Scoliosis: Life, Support & Friends

Two and a half years later...

2012-01-25T04:57:00.002+01:00

Some of you might remember my small contention with Alberta Health Services and the ridiculous wait time that patients were having to endure to get into the Chronic Pain Clinic in Calgary (cue pause for irony). Well, last week my time came. I rolled down to Calgary on a winged, golden chariot (Okay, it was a Greyhound), as angel feathers floated from the sky (it was a snow storm really), during perfectly reasonable weather (which was actually -40 and my eyelids froze shut several times). I was beyond excited. Years of cynicism finally gave way to the sheer excitement that I was finally going to be speaking to people that could help me.

It didn't go according to plan. To start with, the weather was so awful in Calgary (remember, this is Canada we're talking about, and better yet, Alberta. In the dead of winter. I shouldn't have to say much more.) So my lovely "Significant other" and myself ordered the cab for the hotel the night before and gave ourselves lots of time just in case something went terribly wrong. I think you can see where I'm going with this. In case you can't stand the suspense, no, the cab didn't show up, and yes, we did have to walk the half hour in -40 in the dark (because my appointment was bright and early at 8:30 in the morning.) It was a thrilling experience, but fortunately the sheer panic of the situation boiled my blood enough that I didn't feel the cold. And once I defrosted and they sewed my blackened toes back on I felt practically human!

Alex, le boyfriend (I get excited because I can say that even though we've been going out for quite a while now. 10 months on the day of my appointment actually.) came to all the different aspects of the appointment with me. We began with a meet and greet with the doctor, the nurse, the psychologist, and the physio, and I was essentially put through the ringer as they asked every conceivable question (ending just prior to a list of my fears, which the psychologist covered in a later session anyway.) Apparently I garnered some level of enthusiasm from them as they went over past questionnaires where they discovered in a "Do you have any other comments for us?" section, I happened to have written "I find Kiefer Sutherland to be quite attractive." This was two years ago, so I must have been in a 24 phase.

They left no stone unturned, for which I suppose I ought to be grateful. Following this they reconvened to talk about me roughly two feet away in low, suspicious hushed whispered (Just kidding, it was loud and involved a lot of boisterous laughing). The doctor and the physiotherapist returned and did the traditional poke-and-prod examination. I must admit, I was impressed that when I mentioned my carpal tunnel, the doctor also looked over both my wrists to ensure there was nothing too drastic going on there.

Moving on to the psychologist, this was the point I'm fairly certain Alex would have liked to have been somewhere else, namely because we had a bit of a (huge, monumental, earthshattering piss-fest) fight a couple days before, and while of course we're both at fault, I know what fuels my own issues, and he was sitting there listening to me telling this total stranger... I imagine it must have been odd, but he held my hand the whole time, and not once did I get the impression that he was scanning the room for potential exits (Except for that moment where he dashed for the door and started pounding his fists on it, screaming that he would tell them everything. I can't be certain but I think it might have been some form of 'Nam flashback.) Not surprisingly, Mike (my dad, who has been now reduced to first name basis) came up as a major contention. His lack of support and presence through the whole experience has always been, and I imagine always will be an issue for me. But whatever, this isn't about him.

Finally we all gathered back in the office where I was informed that there were some seminars I could go to and... Wait... What? No... Oh, no, no, no. Hah, no, no, no. No. Just... Just no. Let me stop you right there...

The part where I started crying was not long after this when they told me that they weren't sure what I was expecting (Because no one effing tells you what they do at the effing pain clinic!) but they deal primarily in pain management, not pain solutions. There is nothing that can be done save for either a) medical intervention (Eff no) or b) medicinal pain management. But what they can offer are these handy courses where I can meet people just like me.

I didn't say it then but I was certainly thinking it. Kids, I will never meet anyone like me.

So all in all it was a total and utter waste of two and a half years and if anyone ever asks me why I have no expectations in my life I will direct them towards this experience. In May I'll be in Calgary for 2 weeks while I go through an intensive one-seminar-a-day-course-thing wherein I "Get to know my pain" and "Adapt to living with my pain" and "Learn to sleep with my pain" and "Learn how to poke sticks in my eye with my pain". I'm hoping there will also be a "Sarcasm and my pain" course, but I think that one is only offered during the winter course.

Conservative Treatment of Idiopathic Scoliosis

2011-11-29T12:49:00.000+01:00

ScoliosisJournal have recently published a paper about conservative treatment of idiopathic scoliosis according to FITS concept: presentation of the method and preliminary, short term radiological and clinical results based on SOSORT and SRS criteria.

Background
Conservative scoliosis therapy according to the FITS Concept is applied as a unique treatment or in combination with corrective bracing. The aim of the study was to present author's method of diagnosis and therapy for idiopathic scoliosis FITS - Functional Individual Therapy of Scoliosis and to analyze the early results of FITS therapy in a series of consecutive patients.

Methods
The analysis comprised separately: (1) single structural thoracic, thoracolumbar or lumbar curves and (2) double structural scoliosis - thoracic and thoracolumbar or lumbar curves. The Cobb angle and Risser sign were analyzed at the initial stage and at the 2.8- year follow-up. The percentage of patients improved (defined as decrease of Cobb angle of more than 5 degrees), stable (+/- 5 degrees), and progressed (increase of Cobb angle of more than 5 degrees) was calculated. The clinical assessment comprised: the Angle of Trunk Rotation (ATR) initial and follow-up value, the plumb line imbalance, the scapulae level and the distance from the apical spinous process of the primary curve to the plumb line.

Results
In the Group A: (1) in single structural scoliosis 50,0% of patients improved, 46,2% were stable and 3,8% progressed, while (2) in double scoliosis 50,0% of patients improved, 30,8% were stable and 19,2% progressed. In the Group B: (1) in single scoliosis 20,0% of patients improved, 80,0% were stable, no patient progressed, while (2) in double scoliosis 28,1% of patients improved, 46,9% were stable and 25,0% progressed.

Conclusion
Best results were obtained in 10-25 degrees scoliosis which is a good indication to start therapy before more structural changes within the spine establish.

Download the full story as a PDF relating to conservative treatment of idiopathic scoliosis according to FITS concept: presentation of the method and preliminary, short term radiological and clinical results based on SOSORT and SRS criteria.

Annual 3rd Move-athon Halloween

2011-09-27T22:33:00.000+02:00

This year's Move-athon will take place on the 29th October 2011, last year we blogged about this event and it was a great success, Sharon Terry (a member of our Facebook group) is a great inspiration for all she does for people with disabilities and Scoliosis, so this year we are again promoting the Move-athon and showing her the support she deserves. Good luck guys and we look forward to hearing all about the event. Details of this are listed below.

Join the Move-athon Saturday, October 29, for the Halloween Move-athon Benefiting Pediatric Orthopaedic Research

NEW YORK, NY September 2, 2011 — On Saturday, October 29, New York-Presbyterian Morgan Stanley Children’s Hospital’s Pediatric Orthopaedic Division will be holding their 3rd Annual Move-athon benefitting Columbia University Pediatric Orthopaedic Research Group. All funds raised will support finding innovative and effective ways to help kids with musculoskeletal conditions, such as cerebral palsy, scoliosis, spinal muscular atrophy (SMA) and developmental dysplasia of the hip (DDH), move and thrive.

This "spooktacular" event will keep kids moving for three hours with carnival games, Halloween craft making, dancing, basketball, a magic show and much more! Attendees will also meet real-life superheroes from the NYPD and FDNY. Children of all abilities and their parents are welcomed to attend, and Halloween costumes are encouraged but not required.

While many children are affected with orthopedic conditions due to injuries or accidents, a large percentage are born with musculoskeletal disorders that affect their growth, development and ability to thrive in their daily lives. All donations from the Halloween Move-athon will go directly toward improving the quality of life for these children.

Participants are also encouraged (but not required) to help us raise more funds by getting friends, family or neighbors to sponsor their moves. Prizes will be given to all fundraisers and the top three fundraisers will get their choice of a special prize — including a Wii Console Game. The Halloween Move-athon is free to attend and open to the public — but registration is required. Donations are welcome.

Parents are also encouraged to have their children’s Halloween parties with us. It’s the perfect opportunity to have festive fun in a safe environment, while learning the valuable lesson of helping others.

Registration is required and you can do so by going to their childrens orthopaedics website to register, download a sponsor sheet, or make a donation for this year's Halloween Move-athon. The Halloween Move-athon will take place on Saturday, October 29, 2011 from 1–4 p.m. in the Wintergarden of New York-Presbyterian Morgan Stanley Children's Hospital, 3959 Broadway (at 165th Street), New York, NY.

We believe that families will be very interested and inspired by our fundraising event. We hope you will share this information with your audiences. If you have any questions about the Move-athon, please contact Barb Ettington at or 212-222-5208.

About the Columbia University Pediatric Orthopaedic Research Group:
Pediatric Orthopaedic Research at Columbia University Medical Center is advancing the care of children with musculoskeletal disorders around the world — Because treating children’s bones is different than grown ups. Clinical research is conducted by our expert team of physicians and nurses specializing in treating babies and children with congenital, developmental and traumatic musculoskeletal conditions. Our team is committed to provide superior orthopaedic care for children, in one of America’s top ranked children’s hospitals, and our research is published in leading medical journals and presented at international medical conferences.

Research, Treatment and Quality of Life for All Children With Musculoskeletal Disorders.

Division of Pediatric Orthopaedics of Morgan Stanley Childrens Hospital of New York - Presbyterian
The Division of Pediatric Orthopaedics of Children's Hospital of New York. Expert team of physicians and nurses specialize in treating babies and children with congenital, developmental and traumatic musculoskeletal conditions.

Contact:
Ettington Et Al
Barbara Ettington
212-222-5208
childsortho@gmail.com
www.childrensorthopaedics.com

Surgical & Conservative Treatment of Patients with Congenital Scoliosis

2011-09-02T18:07:00.000+02:00

Authors: Angelos Kaspiris, Theodoros B Grivas, Hans-Rudolf Weiss and Deborah Turnbull

Published By: ScoliosisJournal

Background
In view of the limited data available on the conservative treatment of patients with congenital scoliosis (CS), early surgery is suggested in mild cases with formation failures. Patients with segmentation failures will not benefit from conservative treatment. The purpose of this review is to identify the mid- or long-term results of spinal fusion surgery in patients with congenital scoliosis.

Methods
Retrospective and prospective studies were included, reporting on the outcome of surgery in patients with congenital scoliosis. Studies concerning a small numbers of cases treated conservatively were included too. We analyzed mid-term (5 to 7 years) and long-term results (7 years or more), both as regards the maintenance of the correction of scoliosis and the safety of instrumentation, the early and late complications of surgery and their effect on quality of life.

Results
A small number of studies of surgically treated patients were found, contained follow-up periods of 4-6 years that in the most cases, skeletal maturity was not yet reached, and few with follow-up of 36-44 years. The results of bracing in children with congenital scoliosis, mainly in cases with failure of formation, were also studied.

Discussion
Spinal surgery in patients with congenital scoliosis is regarded in short as a safe procedure and should be performed. On the other hand, early and late complications are also described, concerning not only intraoperative and immediate postoperative problems, but also the safety and efficacy of the spinal instrumentation and the possibility of developing neurological disorders and the long-term effect these may have on both lung function and the quality of life of children.

Conclusions
Few cases indicate the long-term results of surgical techniques, in the natural progression of scoliosis. Similarly, few cases have been reported on the influence of conservative treatment.

In conclusion, patients with segmentation failures should be treated surgically early, according to the rate of deformity formation and certainly before the pubertal growth spurt to try to avoid cor- pulmonale, even though there is lack of evidence for that in the long-term. Furthermore, in patients with formation failures, further investigation is needed to document where a conservative approach would be necessary.

View the full article from ScoliosisJournal about surgical and conservative treatment of patients with Congenital Scoliosis

Scoliosis and Dental Occlusion

2011-09-02T17:57:00.000+02:00

Authors: Matteo Saccucci, Lucia Tettamanti, Steafno Mummolo, Antonella Polimeni, Felice Festa and Simon Tecco

Published By: ScoliosisJournal

BackGround
Idiopathic scoliosis is a deformity without clear etiology. It is unclear wether there is an association between malocclusion and scoliosis. Several types of occlusion were described in subjects with scoliosis, mostly case-reports.

Objectives
The aim of this review was to evaluate the type of occluslins more prevalent in subjects with scoliosis

Search Strategy
All randomised and controlled clinical trials identified from the Cochrane Oral Health Group Trials Register, a MEDLINE search using the Mesh term scoliosis, malocclusion, and relevant free text words, and the bibliographies of papers and review articles which reported the outcome of orthodontic treatment in subjects with scoliosis that were published as abstracts or papers between 1970 and 2010.

Selection criteria
All randomised and controlled clinical trials published as full papers or abstracts which reported quantitative data on the outcomes malocclusion in subjects with scoliosis.

Data collection and analysis
Data were extracted without blinding to the authors, age of patients or type of occlusion.

Main results
Using the search strategy eleven observational longitudinal studies were identified. No randomized clinical trials were recorded. Twenty-three cross-sectional studies were recorderd, and the others studies were reviews, editorials, case-reports, or opinions. The clinical trials were often not controlled and were about the cephalometric evaluation after treatment with the modified Milwuakee brace, followed by the orthodontic treatment of the class II relationship with a functional appliance. Clinical trials also included the study of the associations between scoliosis and unilateral crossbite, in children with asymmetry of the upper cervical spine. This association was also investigated in rats, pigs and rabbits in clinical trials. The other associations between scoliosis and occlusion seems to be based only on cross-sectional studies, case-reports, opinions.

Authors' conclusions
Based on selected studies, this review concludes that there is plausible evidence for an increased prevalence of unilateral Angle Class II malocclusions associated with scoliosis, and an increased risk of lateral crossbite, midline deviation in children affected by scoliosis. Also, documentation of associations between reduced range of lateral movements and scoliosis seem convincing. Data are also mentioned about the association between plagiocephaly and scoliosis.

Read the full article and view images about Scoliosis and Dental occlusion; a review of the literature

The Method of Katrina Scroth

2011-09-01T23:03:00.000+02:00

Published by Scoliosis Journal
Katharina Schroth, born February 22nd 1894 in Dresden Germany, was suffering from a moderate scoliosis herself and underwent treatment with a steel brace at the age of 16 years before she decided to develop a more functional approach of treatment for herself. Inspired by a balloon, she tried to correct by breathing away the deformities of her own trunk by inflating the concavities of her body selectively in front of a mirror. She also tried to 'mirror' the deformity, by overcorrecting with the help of certain pattern specific corrective movements. She recognized that postural control can only be achieved by changing postural perception. From 1921 this new form of treatment with specific postural correction, correction of breathing patterns and correction of postural perception was performed with rehabilitation times of 3 months in her own little institute in Meissen and in the late 30's and early 40's she was supported by her daughter, Christa Schroth. After World War II, Katharina Schroth and her daughter moved to West Germany to open a new little institute in Sobernheim, which constantly grew to a clinic with more than 150 in-patients at a time, treated as a rule for 6 weeks. In the 80's this institute was renamed to 'Katharina Schroth Klinik'. At this time the first studies were carried out and the patient series for the first prospective controlled trial was derived from the patient samples of 1989-1991. Content, rehabilitation times and patients meanwhile have changed, and braces have been developed to offer highest treatment security. Therefore today, bracing in the patient at risk has to be regarded as the primary treatment. We have been able to reduce the training times by adapting the old techniques and introducing new forms of postural education (sagittal correction, ADL correction and experiential learning) whilst the programme is still based on the original approaches of the 3-dimensional treatment according to Katharina Schroth, namely specific postural correction, correction of breathing patterns and correction of postural perception.

View the complete article as a PDF about Katrina Schroth and her method

Medial Branch Blocks and a Reason to Make Friends

2011-08-13T20:43:00.004+02:00

Facet joints are funny things. Not funny ha-ha, as in 'let me tell you a joke about a clown', but funny, as in 'let me tell you a story about a clown who lost everyone he loved in a terrible balloon animal accident.' Facet joints are funny, because so often they seem to be the starting point for post-surgical problems. Funny, because despite the research and experimental trials that have gone on, they can more often than not stubbornly refuse to be helped.

That was my experience this last February. I went through the injections hoping that I might gain some relief from my fun arthritis; instead all I got was a bunch of needles and another reason to roll my eyes skyward. With the lack of success on the part of the facet joint injections (oh cortisone, how you have failed me) I was placed on the list for the medial branch blocks, and having just completed the second half of them, I have only one thing to say...

HolyHannahWhatJustHappenedToMeOwOwOwOwOwHelplessWeepingHere

As it turns out, when you have considerable damage to the area of your spine they are fiddling with, the process of stabbing a giant needle directly into the nerves can cause some discomfort. And by some discomfort I do, of course, mean, Dear Sweet Jesus Make This Stop.

I have an admittedly high pain tolerance. The last time I cried from pain was probably when I had my thorocoplasty, and that was five years ago. Everything between now and then has hurt, sure, but I'm not going to get all weepy about it. Or so I thought until last thursday when I had five massive needles rammed through eleven years worth of immobilized muscle tissue, and had a mild anesthetic injected into my nerves.

I'll save the details, because quite frankly I don't want to repeat them. Needless to say, thank go the pain/pressure of the injection only lasts seconds. Unfortunately the need for a mild anesthetic means that you start feeling the injection sights pretty quickly, almost as if your entire back is bruised (ice pack to the rescue, thank you very much.) My injection yesterday went much better, but I'll get to that in a moment. First, a brief intro to the medial branch blocks (hereby known as MBBs):

The medial branches are the tinsey-tiny nerves coming from the facet joints that transfer the pain signal to the brain from the spinal cord. The idea is that by injecting these nerves with a mild anesthetic, they are able to immobilize the nerves and prevent the transmission of this signal. If a patient is receptive to this process then they are placed on the massive list of other patients waiting to get those nerves singed right out of your body (apparently the technical term is 'abalation' but personally I just like making exploding noises whenever anyone asks me about it. "Oh, you see, they go in with a needle to cauterize the nerve and FWOOOMPH! Pain free!")

In Alberta, said waiting list is approximately 18 months (once again, let's observe the irony of people with chronic pain having to wait a year and a half for a treatment that will only last a YEAR before the nerve regenerates.) By my calculations, that means I only have to kill approximately 3744 people before I get bumped to the top of the list, so it's time to band together everyone! Get out those hobblin' posts and get whacking!

The reality of the situation is, apart from that waitlist being completely unacceptable, as all healthcare related things are in Alberta, I am so, so lucky. I don't know why, but in the eleven years this has been going on, I have not once had a bad doctor deal with me. I don't know why I was ever so lucky, but the doctor who preformed the blocks on me is going to bat for me in an effort to get me bumped up on the list. (Just a guess, but I think it had something to do with the helpless sobbing on my part.)

The fact that I won't be waiting another 18 months (I'm still waiting to get into the pain clinic, by the way. We're going on two years now) is a huge relief, because not only do I have a full school schedule, but I'll also be trying to work, and that is a recipe for both disaster and pain (and possibly more helpless sobbing.)

Now, generally once you have your MBB done, or even your facet joints, you're required to stay for about a half hour after so the techs can both monitor your pain relief, and ensure you do not use your medical experience as an excuse to go out and commit various felonies under the guise of 'temporary insanity'. Having gone in first thing yesterday morning, I came out at the same time as three other women, and having nothing else to do, we started to chat about what had happened to us. It as everything from herniated disks, to car accidents, to (no joke) a hot air balloon accident. We talked about what drugs we took, and if we found them to work. We discussed frustrations with health care, how much we like the new building the Spinal Clinic was in, and how positively creepy the old building had been. It was comforting to be face to face with people who shared the same pain for a change. One woman, Lorraine, has had the nerve ablations done on her neck, and told me exactly what I could expect (and as my boyfriend and I were leaving, she asked if she could give us a ride anywhere. It was wonderful!)

The point, dear friends, is that that cheerful smile we force everyday is an open invitation to friendship. People don't talk anymore, that's a fact. We don't talk because we're caught up in these bubbles that we've filled with ourselves and Blink-182 music (because they understand how we feel), but put on a smile, just a little one, and next thing you know you've connected with three other people who you've discovered all suffer the same way you do. It's refreshing, and an amazing way to ground yourself back in reality at the same time. We don't suffer alone. We've never suffered alone.

The rest of the day was amazing as my boyfriend took me all over Calgary and we had a jolly good time because I had to return to Red Deer. It ended, however, on a terrible note, when I realized that I've lost my surgical bits necklace. I've had it since my second surgery, and somewhere over the course of the day it fell off, which means it's scattered somewhere around Calgary. It's been heartbreaking, because for me that was proof that I survived, and that I was made of more than the average person. I don't know if I'll ever find them, Calgary is a huge city and we covered so much area. I've made a Kijiji ad ($4.00 for every piece returned), but the truth of the matter is that I'm not holding out hope. They're not exactly going to stand out, and to anyone else they're probably just pieces of scrap metal. Still, one can always dream... Good luck Badass Surgical Bits Necklace. I hope whoever finds you doesn't just toss you out.

Mostly because that's probably violating some sort of environmental law.

Low Grade Isthmic Spondylolisthesis; A Randomized Controlled Study

2011-08-08T20:31:00.000+02:00

ScoliosisJournal published an article regarding surgical management of low grade isthmic spondylolisthesis; a randomised controlled study of the surgical fixation with and without reduction

Authors: Ziad M Audat, Fayeq T Darwish, Moh'd M Al Barbarawi, Moutasem M Obeidat, Walid H Haddad, Khaldoon M Bashaireh and Ihsan A Al-Aboosy

Background

Spondylolisthesis is a condition in which a vertebra slips out of the proper position onto the bone below it as a result of pars interarticularis defect. The slipped segment produces abnormal positioning of the vertebrae in relation to each other along the spinal column and causes mechanical back pain and neural breach . Methods and materials: A randomized and double blinded study consisted of 41 patients aged 36-69 years ( 18 females and 28 males) treated for symptomatic spondylolisthesis between December, 2006 and December, 2009. All patients were randomly distributed into two groups I and II. Twenty patients were in Group I; they underwent reduction of the slipped vertebrae by using Reduction-Screw Technique and posterior lumbar interbody fixation (PLIF). Group II consisted of twenty one patients who underwent only surgical fixation (PLIF) without reduction. All patients in this study had same pre and post operative management.

Results

Only one case had broken rod in group I that required revision. Superficial wound infection was experienced in two patients and one patient, from group II, developed wound hematoma. The outcome in both groups was variable on the short term but was almost the same on the long term follow up.

Conclusion

Surgical management of symptomatic low grade spondylolisthesis should include neural decompression and surgical fixation. Reduction of slipped vertebral bodies is unnecessary as the ultimate outcome will be likely similar.

Download the PDF regarding low grade isthmic spondylolisthesis on PDF.

More than the Sum of My Parts

2011-06-06T22:46:00.000+02:00

We talk about many things on both the facebook page and this blog. We discuss our trials and tribulations, our hate of hospitals and the sub-par jello. We reflect on our experiences with MRI's and the many x-rays that have results in slightly mangled super powers. We meet and connect and find common ground in our suffering, and we hope that despite the sensation of loneliness that eats away at us, we aren't ever completely alone.

We contemplate the idea of fate, if it exists, and if so, why us? Why our spines? Why our lives? Why are we, of all the people in the world, the ones afflicted with surgeries and hospitals and appointments that never end. Why do we suffer with health, loss, love, life - and why do we continue to stand here, in the midst of our lives, acting, playing, pretending, doing whatever we can to ensure that the world never sees the weaknesses we feel.

We do it because there's no other choice, because (if you believe in fate) we were marked a long time ago and left with no alternative but to do what we could to survive the experiences that have been thrown on us. We feel like we're drowning at times, there's a sea of paperwork and medication that's roving and quivering and pulling us down as the waves hit us again and again. And we still swim. We swim because that's all we can do; our choices are limited to surviving or not, and we choose to do it.

We find joy where we can. In colouring books, in endless gardens, in laughter and poorly timed spine-related jokes. We find our happiness wherever we can, and that action, that simple desire to continue on, has tugged and twisted and given us the power to find our happiness wherever we need to. In colouring books and endless gardens, in bad jokes about a doctor, a lawyer, a clown, and a rabbi walking into a bar (and the bartender says "What is this, some kind of joke?") We find this happiness and we cling to it, because we all know things won't always go according to plan, and we need our happiness whenever we can get it.

We're built from scraps of metal and scraps of our own humanity; the little parts of us that are left after the poking and the prodding and the sensation that all dignity has been stolen away before we were even given a chance to live and experience life as it's meant to be.

We're built from failed dreams and stubborn hopes that refuse to let go of us. We're built by skilled hands and our own raw determination to do this, to win at life (in a realistic sense, not a 'Charlie Sheen' sense.)

We have to face our lives every day, to get up, to live, to do whatever it takes to pour that bowl of cereal or sit in that classroom or toss our children into the air. And we do it because we made it this far; we're here, alone in our own pain, but not in our experiences. We have each other, even if we barely feel like we have ourselves on some days. We can lean and cry and soothe and laugh, and we'll do it together, for as long as we need to. For as long as it takes to find another joy.

Because above all else, my friends, we are people, part of humanity, part of everything. And we are, above all else, more than the sum of our parts.

-Kathleen

The Loss Of Life

2011-05-27T13:07:00.001+02:00

Some of you may or may not have noticed my lack of contribution to my own network since the 11th April, I felt I wanted to explain to those who were not aware of what was happening with my life at the moment, especially as I have constantly been heavily involved with the support of Scoliosis patients since 2004!

Sadly and heart breakingly I lost my best friend and husband on the 11th April, since then I have been "existing" and trying to find a way to get through the enormous pain in my heart and the feelings of lonliness that have been with me ever since, Chris (my husband) was a great Scoliosis support for me and I miss him to lean on, he did a LOT for me as he understood the problems I faced with daily living, and for someone who didn't have Scoliosis I think that was amazing of him to show such understanding of my condition. Had it not been for Chris I would not have created all the groups, websites and blogs that I run - he was the one who pushed me into creating my groups not only so I could share my pain with others but to give me a focus away from my own suffering.

Since the day he died I have not been strong enough to support myself, let alone 2,360 people that are part of my community on Facebook, not to mention the Yahoo! group and blog, this is why I decided an explanation was required, Chris would not want me to walk away from the friends and support I have gained over the past 7 years but on the same token I would hope many will understand I am in no place right now to help anyone with anything as I am so wrapped up in my own grief (selfishly).

Fortunately, I met and became friends with some lovely ladies and those people are now making sure the group does not get left behind with me! Thanks to Judith, Laura, Linda, Thalia, Tracey, Janice, Laurie, Bev and Susie who have stepped in and taken over for me while I try and get moved back to the UK.

Chris and I lived in Spain for 13 years and had plans to move back to the UK and settle in Devon, unfortunately he passed before we could accomplish this dream, so I am now living here in Spain with my Mother while my Dad is back in the UK. I am trying to get our home packed and then rented out so I can get back and be with my family and Chris'. I am hoping this will give me time to reflect and decide where my life will take me from here, this is a very hard decision to make as Chris and I were ALWAYS together. We ran a business from home together, obviously we lived together and to be honest we didn't go far without one another, whether that be a trip to the dentist, the supermarket or just out for a beer - we were extremely close as friends and husband and wife, we never stopped talking to one another and this is what I am now missing the most.

I could talk to Chris about anything that was troubling me and like I said he would understand to the best of his ability my Scoliosis pains and held my hand through all the x-rays, MRIs and Dr visits that followed my surgery, I miss his words of wisdom and comfort. This is not a "poor me" posting but an explanation as to why I am struggling to cope and why I have not been around much on the forum to support you all. I am hoping my strength will come back and the "FEISTY SCOLIOTIC" will return but at this moment in time I cannot see the wood for the trees, nor can I see the point to my life anymore as Chris was always in it.

Chris and I met when I was 16 (I had surgery at age 12) and he was 24, our friendship started to build from there, we would write letters to one another, talk on the phone a lot and I would spend many a night sat on his sofa just chatting, it was not until I was 21 that we realised we were meant to be together. We married in 2001 and never looked back, unfortunately my Scoliosis prevented me from having children (I can assure you it was not from lack of trying!) so we were in the process of adopting from China.

I hate not being able to share my Scoliosis lows with him but hope I can find the strength from somewhere to continue being me, Chris helped me overcome the need for a walking stick and a wheelchair and gave me the strength to say "I don't care what people think" but since he is no longer by my side I have found I am going back into myself once more and trying not to admit I need help and I can do everything myself which of course is affecting my back more than I care to realise or want to admit.

I have written a memorial website for Chris as I am raising money to send his ashes to the moon on the Celestis Luna Service

On the other side of things it has made me see how important the Facebook group really is, I am sure I am not alone in this world dealing with grief and a health condition which causes debilitating pain so I have Chris Icough to thank for that for helping me come to terms with my Scoliosis and fight it and I hope in time I can find comfort in numbers also.

We have not forgotten about the competition we started in March for the new slogan regarding the new merchandise we plan to launch, Laura and Linda will be organising this and will send me the final 3 slogans so I can choose the winner, please be patient with us there - my situation has put more pressure on the other ladies.

Be strong in yourself and I hope the Facebook group has continued to help all of you, I need more time to face my own fears, which are many. Thanks for your understanding and be gentle with the moderators they are trying their best! ;)

A Hospital Survival Guide

2011-03-24T20:49:00.000+01:00

I'm in a bit of a miserable place right now, so I thought I would tap into some sarcasm and make myself, and hopefully you loverly Scoliotics, giggle a bit.

The fact of the matter is that at some point we probably have to have a surgery. If we're spectacularly unlucky we might have two, or three. Keep in mind by the time you hit 4-9 surgeries, you should probably order yourself a plastic bubble and black out your windows. Personally, I am still waiting for my order for military grade food supplies that I can keep in my bomb shelter.

So, with that in mind, how exactly do we survive a surgery? What sort of ungodly horrors await us and what can we do to make the experience a little more bearable? Follow this guide and I assure you, your hospital experience will be...average, really. I mean, none of this is going to actually make it better because, let's face it, the only way to make any surgery better is to be told that while the doctors were inside you they decided to install rocket boosters and laser vision. At least, that would make me feel better.

1. MP3 player: I cannot stress the importance of this. Unless you're an employee of Apple or Microsquash or a Wallstreet trader, the chances are you're going to be in a room with someone else. If you're really unlucky that someone else is going to have both night terrors and an inexplicable need to invite you to Farmville every few minutes. To make matters worse there is going to be beeping and crying and rustling and shuffling and very quickly you are going to be driven to a point of madness that will result in you using that rocket booster to fry your roommates farm and take out the nurse's station. An MP3 player will be a godsend. Fill it with music that calms you, makes you happy, fits the mood, whatever you need. One concern can be getting tangled in the cords, but you won't be moving anywhere fast, so have no fear. Slip on your headphones at night and have at 'er. Without them, it's going to be very difficult to get a good nights sleep.

2. Colouring Books: Trust me when I say, distractions are important. With health care being the way it is you'll have plenty of company for the first couple days. And by company I do, of course, mean people who are the equivalent of drill sargeants at boot camp, only where they demand fifty more push ups, your squad of angry people are going to be demanding you master the log roll, work on your lung capacity and, for the love of all that is good and holy, walk.

Once you've mastered the basics, most of them will leave you alone. In fact, you won't see a nurse ever. That call button is one giant misleading sign meant to give you some sort of false hope in your doped up state. So suck those ice chips carefully and make sure you have an infinite supply of things to keep you entertained. I cannot stress enough the value of colouring books. I'm one hundred percent serious here, colouring books are a godsend. Face it, you'll barely be capable of reciting the ABC's let alone reading a book for the first few days, so a book with cheery Disney Princesses or Batman and the obligatory four different coloured markers that only last a page and a half will be the greatest invention of all time. And the best part? Once all is said and done, if you feel like holding on to it, because hey, you might want to give Optimus Prime a makeover at some point, you can easily claim that it's the book of a niece or nephew and yes, they seem to have a serious issue with colouring in the lines. No one has to know!

3. Man-Slave: Pretend for a moment that you won't have a family member or friend at your beck and call. The man-slave is essential to your survival. You might not be up for pina coladas and Bob Marley crooning in your ear, but having someone at your beck and call will help you towards a speedy recovery. Take this example:

You: (Thoroughly doped up) Gnnarflg...

Edjuardo, the Pool Boy: You would like massage? I can do massage.

You: Yeaaaarghh.

Edjuardo: Let me tell you about old country and my all boy's school for young, ripping gentlemen where I grew up.

You: (Sigh of contentment)

But if you're more interested in just focusing on the healing process, your man-slave will be able to help you wash your face and arms when you can't get up, help you do that cursed log-roll in the early days, get the nurse for you, help you brush your teeth, and just generally assist in all the little things that are going to see completely overwhelming to you. Plus, you know, in my fantasy he's a greased up pool boy, and that makes me feel way better.

4. Inexhaustable supply of food rations: Okay, I know I'm beating a dead horse here, but... strained. oats. Oats that have been, for whatever reason, strained. That is what you have to look forward to. You know why? Because ice chips are for winners, and hospital J-ELLO is gross. Your best option at this point is to sew some Crispy Crunch bars into your pants, use pieces of sliced ham as shoe supports, and devise some sort of 'security blanket' entirely out of dried fruit leather. I know it sounds like a bit of work just to avoid hospital food, but.... strained. oats. Trust me on this, in those lonely nights when your tummy isn't grumbling (because until it grumbles you won't be given real food) you will be eternally grateful for that dried fruit blanket.

5. A sense of humor. I heard this one on Conan. So this moth walks into a podiatrists office and the doctor says "what can I do for you?" and the moth says, "Geez, Doc. I don't know what I'm doing anymore. I wake up every morning and turn over and look at this frazzled corpse of a woman I once love, whose life is dead in her eyes, and whose face is a leathery distortion of her beauty that faded years ago, and I wonder why I ever loved her if I can't love her now as she is."

The moth goes on, "And I hate my children, Doc. I know I'm a terrible father, I am, but I hate them. My youngest daughter is dating a man ten years her senior whose only aspiration is to be the next Bon Jovi. Meanwhile she's failing all her school classes and the only time she ever smiles at me is when she's about to ask for more money. And god forgive me for saying this but I hate my son. I look at him and it's like looking in a mirror and I see all the youthful idiocy that I once possessed; I see all my failures and my hopes floating dead in the water. I hate him, and if I could I would go back in time and I would erase all of it, I would take it all back. I wouldn't fall in love with my leathery wife and we wouldn't have two-scum-of-the-earth children, and I would be happier. And my job-"

"Now hold on," the Podiatrist says, "You sound incredibly depressed. You need a therapist, not a podiatrist. Why on earth did you come to me?"

"Simple," the moth says, "The light was on."

HA! Now imagine how funny that is while you're doped up on morphine.

6. Moist Towelettes: This is a legitimate suggestion actually. Now, if you're fortunate enough to have someone with you 24/7, the use and upkeep of face clothes and hand towels shouldn't be a problem. It isn't fair to assume that just because you have company doesn't mean they'll be at your beck and call. If that's the case, you might want to have a handful of these near by. Hospitals are sticky, gross places full of sticky, gross, sick people with sticky, gross, sick, and winkly fingers (That much we can all agree on). The cure is a moist towelette. No one would even question you whipping one of those puppies out after you're done your delightful meal of strained oats and dry toast.

7. Cheap, Despicable Magazines: During my second surgery I somehow managed to drag myself out of bed and down to the hospital gift shop where, to my delight, I discovered a People magazine that reminded me of Johnny Depp's birthday. Now, some may say I sort of am madly in love with Johnny Depp, but they exaggerate. The fact that I wanted to celebrate the occasion (which happened to be the next day) was based out of my desire to bring some sort of joy into the miserable, clown infested hospital I found myself. Plus, everyone knows Johnny is a total hottie.

Like I said earlier, for the first few days you aren't going to be up to much deep thinking (colouring books. colouring. books.) So a cheap magazine filled with juicy gossip (or for you gentlemen out there, trucks with large wheels and lots of mud) can provide hours of endless entertainment. The best part is purchasing it from the hospital gift shop; you can guarantee it will be from the last century, as opposed to the magazines that we find in the ortho-department waiting rooms that have sexy hieroglyphs from the sixth century, and boy, let me tell you about Ms. Hatshepsut January, she's a total babe.

But really, there's nothing nicer there a completely mindless magazine in which you can read about some delusional editors belief that Prince Charles' secret sonar hearing is picking up Alien Transmissions.

8. A Blanket. I drag mine with me everywhere. I've had it since I was born. At one point it was a baby sleeping bag, then it just became a blanket, then it degraded into a costume piece my brother almost used for his leaper costume in Jesus Christ Super Star. Needless to say it's in bad condition, but it comes to every, single, hospital stay. I used to worry that the nurses would assume it was some sort of rag and toss it out, so I clutched on to it for dear life. It's a worldly comfort that I wouldn't dream of going on without.

During my last hospital stay, my Auntie Liz (who is a quilter-extraordinaire, I might add) made me a beautiful Asian quilt, with all my favourite colours on it. It was a huge comfort and, more importantly, kept me a heck of a lot warmer than those lame linen sheets that nurses tuck around you in failed attempts to cut off your air supply and end your misery. That's right, nursing population of the world, we're on to you.

A comfort blanket is just one of those things, it might seem irrelovent at the time, but when you're plugged into Hawksley Workman, picking bits of Mars bar out of your teeth and flicking them at a photoshopped image of Kate Middleton shining her narwhal-esque horn as Edjuardo, your man-slave, hangs up your poorly coloured images of Princess Jasmine and Jafar, you will be in hospital heaven.

And by heaven I mean pretty darn drugged up and having haunting dreams about 18th century vampires chasing you around a cross-section of a house (true story.)

Kathleen

A Twisted Affair

2011-03-09T11:41:00.000+01:00

I have been meaning to blog about the meeting we had in February for the UK Scoliotics since returning but life has been so hectic I have just not had the time! So please don't shoot the messenger here for being late on her blogging ;)

We met at La Tasca in Victoria, London at lunch time on the 19th February, we had a great turnout with people coming from all over the UK and of course Spain! I have listed the people who attended below.

Maria from Uttoexeter, Staffordshire
Megan from Cambridgeshire
Judith from Mill Hill, London
Linda from Croxley Green, Watford
Krysie from Coventry
Karen from Hurst Green
Simone & Chris Icough from Spain
Evi from London
Lisa from Kent
Janice from Sunderland
Gail from Hull
Janet from London
Alana from Spain

The venue itself were very helpful, they threw in some free jugs of Sangria, (which seemed to go to Maria's head - hahahaha, although I think she enjoyed it ;) and 5 pounds off the menu price per head, we had a great table downstairs in the corner with the comfy seats, which I grabbed when I arrived knowing that twisties struggle to sit for long periods and we need to be comfortable!

Majority of the people arrived at lunch time (12pm) and by 2pm everyone was there and lunch commenced, we had gambas pil-pil (prawns with garlic and oil), meatballs, tortilla (Spanish Omelette), chicken wings in a spicy sauce and paella which is very typical Spanish, there was so much food we could not possibly eat it all so after we had all wrapped up and had our photos we went and fed the homeless with what food we had left, seemed a shame to waste it and that also meant another good deed for the day was done :)

Everyone got along, shared stories, pain relief and of course we all had a bit of a moan about how we struggle with our daily pains, whether that be hips, backs, shoulders, arms and legs - Scoliosis affects the WHOLE body not just the spine and to be honest I don't think many people are aware of that, especially people who do not have Scoliosis.

We had a nice crowd, some old timers such as myself who had their surgery 20 odd years ago, some members who had their surgery only a few months ago and some who have not had surgical correction at all, also among us was a Pilates instructor who had her surgical correction some time past and now teaches Pilates from her home, she was very helpful and gave good advice on exercise. We also had a couple of Mums arrive with their daughters and that was lovely to see their families giving support and joining in the conversations.

It was a shame that none of our resident males on the "How To Look Good Twisted" group could not make it, we will, however, let them off, one of the guys, Christopher, had a surgery date the week before for his Kyphosis so we can hardly blame him for not wanting to trek to London ;), we wish him a good recovery. Steven and Simon who are moderators were unable to join us due to pain, which was a real shame but this is part and parcel of the condition Scoliosis, one day we are fighting fit and the next day we are hunched over, in lots of pain and struggling to move, we hope they are also having a good week and perhaps we will see them the next time.

I was also very grateful to my friend Alana (and I cannot leave her out of this!) who came all the way from Spain and offered her support to me, to be fair I didn't know what to say when she said she would come and support me for my first Scoliosis meeting, with her not having Scoliosis and not knowing much about it I felt that was very brave of her to come and meet all these people with back problems and just get on with it, so thanks Alana for your support, your friendship means a lot to me.

Thanks again to everyone who made the effort to travel to London to meet us for the first community event, you certainly made my day and I am so pleased we organised this, it was so nice to be surrounded by my own people! We will have more in the future so watch this space - our next event is LAS VEGAS, so come join us in the most exciting city on the planet!

What is Scoliosis?
Scoliosis is a common orthopaedic condition affecting spinal alignment, growth, and function. A wide variety of conditions, many of which affect the neuromuscular system (eg, cerebral palsy, muscular dystrophy), are associated with the development of scoliosis. However, the most common form of scoliosis, which has an undefined etiology and affects otherwise normal adolescents.

Adolescent Idiopathic Scoliosis (AIS) develops in approximately 1% to 3% of the population, primarily in minor forms that do not become progressive or problematic in later life. However, a small percentage of curves do progress to a range that warrants treatment with either an orthosis or surgical arthrodesis. Bracing to prevent and /or limit scoliosis progression is an option only in the growing patient with a moderate curve (25º to 45º). Surgical treatment is considered for patients with curves greater than 40º to 50º.

Scoliosis checks in UK secondary schools

2011-03-07T17:57:00.000+01:00

A friend of mine on Facebook has just started a new petition and as we like to get involved in anything to do with Scoliosis here we decided to give them some help online so we can spread the word and get as many signatures as we can.

So, we now need YOU - the twisted community to get on board and sign the petition for "Scoliosis checks in UK secondary schools" - we also like to see this petition is using the same slogan that we also promote on the wristbands "Speak up for Scoliosis" - so do your bit today and sign that petition! Thanks my lovelies!

"There is increased grinding and popping in the sagittal region." "Sagittal? But I'm a Cancer!"

2011-01-23T06:44:00.003+01:00

Life never fails to be interesting for me on the medical front. Wednesday I met my mom in Calgary; my first cortisone injection was bright and early Thursday morning. So we get to the Holy Cross and find the Advanced Spinal Care Centre, which, incidentally, is in the basement and as such I'm fairly certain qualifies as at least one of the many circles of hell. I'm trying to stay up beat and overly Mary Poppinsish in my outlook, so I bound up to the desk and proudly proclaim "I have an appointment at 9:30! Last name Sawisky, first name Kathleen!" (Unfortunately the five piece band I had hired to announce my arrival turned out to be double booked.)

That was when it all went to hell in a hand basket. The receptionist looks at me, to the desk, to the tower of file folders beside her, flips one open and then turns back to me to say "We've been trying to contact you for three days."

Oh no, oh no, oh no, oh no no no.

"We don't have your requisition form."

No, no, no, no, no. I can't wait six more months. No, no no.

Let's just save me the embarrassment and say that yes, the water works were turned on, mostly due to sheer and utter hysteria. That's what happens when you're booked for an appointment that really has about as much appeal as a tea party with murderous clowns. An appointment that, despite its horrible, general...ickiness, is supposed to help you in the long run. An appointment that you wait six months for. A very painful six months.

So, yes, the water works came, and everything was very embarrassing and eventually they decided that hey, I'm still booked, so we'll just get it over with while we get your GP to resend the form. Don't ask me how they managed to book me in the first place without my requisition, I have no idea. Apparently being part of the circles of hell causes important papers to randomly flare up and dissolve while tiny naked demons spring out of dark corners and torment the staff with pitchforks.

I was pretty pleased to see that I was going to be able to watch the procedure on the screen (while ignoring the fact that I was under an x-ray beam for at least six minutes, radiating my ovaries and halving my chances of children by another 13%.) The best moment happened when they first positioned the camera over my lower back and noticed that there wasn't a spine there as there normally is.

"Um, your spine is-"
"Yeah, I know. Trying a couple inches to the left."
"Oh hey! There is is. So you have scoliosis huh?"
"And you have a degree in this?"
"What?"
"What? Nothing! Yes! Severe scoliosis! Dandy! Let's do this."

For the most part it wasn't too bad. They froze me good and solid. Unfortunately the area they had to go through was by brick-like muscle area in my left lumbar region, so despite there being no pain there was, and still is, an intensely uncomfortable feeling that went along with them trying to maneuver the tube/needle/piece of spaghetti near the facet joint.

All in all fairly painless, or, at least it didn't make it worse. I'm fairly certain already that there won't be any improvement from this injection, and here's why...

Yesterday I had an appointment with my surgeon (who once again brought me to the edges of hysterical laughter because, seriously, he's awesome.) I had the obligatory x-ray done and after only a couple minutes wait he ambled into the room and looked at the computer screen. The good news, we established, is that the curve has not visibly progressed (which means it hangs on that 49 degree cusp like some sort of small child with sticky fingers!) The bad news, and here's where the injections come into play, is that the arthritis that was developing has become incredibly worse. Right to the point where my x-ray from six months ago looks normal. NORMAL. You could hardly make out a vertebrae under all the white, gunky, arthritic, nastiness that was going on at L3-4. And which was the vertebrae that they injected the day before? L4-5 of course. He made it very clear that I'm to demand they inject 3-4 next week.

I have to say, the arthritis news was very disheartening. Mostly because I'm 21 and, as I said before, it's an old persons disease. Okay, no, it's not, obviously, but sarcasm is all I have left now. On the plus side, I was educated on proper medical terminology. We discussed my right thorocohumpty and he explained that really, that was one of the bigger issues people had. My response? That it's pretty nasty.

"No, no." He says, "The proper term is 'prominent'. It's 'prominent', not nasty."
To which I reply. "Ah, prominent. And here I was using all these four letter swears."
Who'd have thunk? We were wrong, gang! Our backs aren't screwed up, they're simply prominent!

Being a doctor, he couldn't help but ask me if I noticed any difference between the two x-rays from that day and six months ago. As we had already established that there was arthritis there, the only thing I could point out was that one x-ray was larger than the other. Cue three solid minutes of him fiddling with the computer until they were equal sizes (they never really were.)

I'm pretty happy that, despite the fact that my back is oozing arthritis (That's right, I said oozing) my Doc at least as the common decency to have a sense of humor and indulge mine because, really, what else can a person do at this point? Crying won't help, but it will get you appointments!

Later, gang!
Kathleen

"The time has come," the Walrus said...

2011-01-16T07:16:00.003+01:00

"...To talk of many things! Of meds and splints and spinal facts! Of surgeries and dreams! And how much a curvy spine can suck and how we deal with things!"

It was an interesting sort of holiday season. The sort of interesting that ends with a person spending two and a half days at a bus depot, sleeping on the floor, making friends with random strangers, and doing your gosh-darned best not to lose your mind. Lambchops tiddliwinks. I mean-!

I spent the solid portion of the last week trying to get back into the school mood. New classes, more work than last semester, I need to get a part time job, I'm still trying to get my writing to professional standards and, oh! What's this? An appointment with the Advanced Spinal Care Center in Calgary for cortisone injections? This week? What?! Yes, apparently time itself decided to speed up because I had no idea it would be so soon (and consequently told my teachers that, and I quote "will be going away sometime in the next couple of weeks.") Fortunately they were all relaxed about it; I guess when you get to post-secondary standards people are forced to acknowledge that there is indeed life outside of learning institutions, and once every so often those little pieces of life need to be addressed before Chapter 3 Summary Questions.

I leave tomorrow bright and early to meet my mom in Calgary. We try to take every opportunity we have in Calgary to make a 'Girl's Day' out of it. As I'm of legal age that generally ends with us drinking G&T's and Tom Collins in the lounge of the hotel, giggling over Bobby, the cute bartender (I kid you not, his name actually is Bobby.) I think I look forward to that more than anything; now that I live away from home Mom and I really don't get to interact enough, and the holidays were miserable because we had limited (if any at all) girl time to ourselves. Don't get me wrong, I love my brothers, but a girl needs to spend some time with her mom, just one-on-one every so often.

I'm not really sure what to expect on Thursday. My appointment is at 9:30, so of course we'll arrive a half hour early and fill out the obligatory "What Else is Wrong With You?" form. Generally I have to take those seriously because, hey, I don't want the doctor screwing something up. Lord help them if they give me a questionnaire to fill out once the whole thing is over and done with.

I'm supposed to be having four injections in total, one each week. Unfortunately only the one is booked so far, so I have a feeling I'll be waiting a considerable amount of time before I get in for the second. Here's hoping the first one is a roaring success (although I must admit to some pessimism, especially after what I've been told by those who have experienced the same sorts of injections.) And I can't really say that they can't make things worse (because every time I do say it, something inevitably gets worse.) But hell, I can't let fear get in the way of a possible solution. Growing old is daunting enough, and if there's even a slim, minute, tinsy-tiny chance of this helping, I'm willing to try.

The next day (because one night in Calgary for medical stuff just isn't enough for me) I'll go see my surgeon and find out if my curve has hit and/or exceeded the 50 degree mark. According to him, once it hits 50 degrees, the curve itself will start growing excessively. I can only assume that has something to do with the maniacal power of gravity, once again doing its very best to make life as difficult as possible. It's bad enough that I can't jump off a building and fly; now you're telling me a 50 degree curve will start to get rapidly worse? Blast! Logically I should be at around 52 degrees or so (that's going by previous x-rays and my surgeon's considerable math/estimation skills), which means I need to start thinking about what I want to do. If the injections work then hey? Why not just keep going with those? On the other hand, if the curve is starting to get rapidly worse (as rapidly as a slowly curving spine can go. Much like a snail trying to escape a burning building) then the injections will hardly do me much good in the long run. So do I wait it out until, say, next summer when I'll be done my diploma and can take some time off from school - or do I get it over with for the sake of, well, just getting it over with? I'd be losing the last of my mobility in my spine, on the other hand that gut-wrenching cracking noise that it has been making consistently for the last three months would probably stop.

Oh lordy, those cracking noises are enough to drive a girl batty.

If I wanted to get really technical I could throw in the fact that after I'm done my diploma I'll need to take a break from school anyways to raise more money to finish my degree (Because the horrible circle of not being able to work because my spine is screwed up, because I worked too much to get money to go to a school that I can't even attend full time because my back is screwed up... goes on and on and on...) So, logically, next summer would be ideal (not this summer coming up, summer 2012). Granted, Kelti and I planned on doing a train trip to San Francisco then as well; I could always book a surgery for after that.

On the other hand maybe everything will go according to plan. And maybe I'll win the lottery with a ticket that I found stuck to my shoe with a piece of cinnamon gum (I hate cinnamon gum!)

Life can never be easy, but it'd be nice if for once it wasn't complicated.

So there you have it, injections, surgeon appointments, curling into the fetal position (because that's what the Foothills Hospital does to any normal person), recuperating at home, going back to school... the circle is unending. Wish me luck!

Kathleen

Oh my holy ghost.

2011-01-07T15:07:00.003+01:00

Hey everyone!

Hi to everyone, especially Simone!

Oh my holy ghost.

I totally forgot about this blog for about a year, I hope I'm still welcome!

Truth is... I lost my password.

But now I'm back :)

Just tell me to get lost if you like hahaha, I totally ditched the scoliosis community for a long time!

Well just to let you know, my spine is now at 16 degrees both curves (i think) and has been for the past year or so.

I am still undergoing bracing -.- which is so very very annoying and really hard on hot scorching days like this!

But I will probably be done with bracing and with worrying about scoliosis for life by February! Which will be really exciting for me, for my 16th birthday I will be brace free! I haven't been brace free since the 7th of March 2008.

Anyway I'm sorry I was momentarily lost in cyberspace, I promise I will still keep in touch after I'm done with my brace and answer first-timer brace-wearers' questions. I have about 3 years experience with bracing now hahaha :)

My curves were 31 degrees each when discovered.

And also for more about me, I have a new blog at http://izzletayfouetted.blogspot.com/ I'm not sure if I'm allowed to link that here, just remove it if it's not allowed, I don't mind.

I'm sorry again simone! I hope you will accept me back :) Hope you are well as well :) How are you? how is your back?

xo.

Happy-Non-Denominational-Winter-Holiday!

2010-12-25T20:54:00.003+01:00

... And a Merry-Countdown-to-the-New-Cycle-of-Days-Weeks-and-Months!

Some of you may be looking at the time stamp and be asking yourselves, Just what sort of ten flavors of pathetic is Kathleen to be writing a blog on Christmas Day... at 1:00 pm? Well, I would list out said ten flavors of pathetic but really, that would just be another few minutes of me on the internet instead of gorging myself with the various delectable goodies that my Grandma is currently setting out for the family to enjoy. And as a grandma, she knows what sort of goodies are required for any and all occasions (Weddings? Petit-fours! Funerals? Casseroles with potato chip crusts! Just kidding, as Canadians we do not approve of potato chips on our casseroles.)

The long and short of it my fellow Scoliotics, is that it is the holiday season, and as such we are often told to take a moment and consider the grandeur that we all have, and how lucky we are to be spending the holiday's with the ones we love (or, in some cases, the ones we barely stand.) Life can be rough sometimes, we get trapped in these endless cycles of self-pity and disparaging thoughts about ourselves and our genetics. On more than one occasion I've spent the holidays on my back - er - side, thanks to surgeries. It isn't fun, I wouldn't repeat the experience if I could avoid it. But despite it all I know I'm lucky to be where I am and with the family who has provided an endless pillar of strength for me to depend upon when times get rough. We may all suffer in silence, but we don't suffer alone.

So, my dears, as we go off to share the holiday season (in whatever form it may take for you), I leave you with a short quote from the wisest of the wise... The Muppets.

Merry Christmas!

-Kathleen

The Healing Power of Music

2010-12-12T01:21:00.006+01:00

Math is simple. I was never any good at it, but as I've gotten older I've been able to carefully pull apart several complicated math problems that have eluded mathematicians for years. And here they are:

Arthritis/General back pain + winter/snow/ice/cold wind/etc = Pain.

I know, I know, it's revolutionary. Don't worry, I've already contacted the media, the Nobel Prize Committee has been alerted to this development. Now we can all just sit back and relax and wait for the world to catch up.

Oh wait...

Everyone has a variety of ways to deal with their pain. I've talked about some of them before, including but not limited to: Drugs, drugs, hot water bottles, drugs, crying in the fetal position, crying laid out flat on ones bed, and crying while a bottle of drugs tucked inside your fetal positioned body, catching your tears which can later be warmed and put in the hot water bottle. But sometimes, probably more often than any of us would like to admit, drugs and tears do us no good. They're the bandaids of life, and eventually they get gross and hairy and you have to tear them off and discover that the skin underneath has the look of a pale raisin and you know that putting another bandaid on is only going to mask the problem further and... I'm sorry, did I get off track?

The point is medicine and science can only take us so far. Knowing that we have to live the rest of our lives with these disorders can be a daunting thought and, at times, may seem like more than we can bear. Each of us have our own ways of dealing with the thought of a lifetime of pain. I write and sing, and play the piano and generally listen to music (I have also begun to re-watch Sailor Moon, but that's a different story altogether.) Over the last ten years I've acquired quite a collection of 'Feel-Better' music. For the most part they're songs that cause the dam of tears to break, just for the emotional release. Sometimes they're insanely happy and I'm left with no choice but getting up and dancing along to them. Sometimes they just hit on how I'm feeling like a bullseye, and I can take the three and a half minutes to gain some perspective on my life.

Music has, and always will be, a form of healing for me. I've been lucky enough to have people in my life who have been passionate about the topic without the medicinal properties, and their enthusiasm for songs and rhymes have only served to increase my love of it. I listen to music because it defines my life, I write music because it is one of the truest ways I know to say all I need to without using words, and I sing mostly because I wasn't allowed to bungee jump for a hobby and had to pick something else.

Where am I going with all this? I want to share with all you readers today my love of music. Below you'll find a variety of links that lead to some of the many songs that I use when I'm feeling in the pits and need a cheering up, or when I get the uncontrollable urge to do the Snoopy dance with no one watching. Basically, it is the sound track of my life, and I'm hoping that they will be able to brighten (or darken, if you need a good cry) your life today as much as it has mine. I almost want to burn a dozen copies of the songs and just send them out (Marketed as "Kathleen's Illegal Music Therapy" perhaps?) but for the time being this will half to do. I've separated them into categories, just to make it more simple. They'll be, for the most part, Youtube videos I think. Although some will lead directly to websites. I hope you enjoy, and I truly hope everyone out there is have a wonderful holiday season, chronic pain inflicted or not!

(Note: All songs are appropriate for all ages. Although Tom Waits' voice might give you nightmares; just trust me.)

Happy:

Hawksley Workman - "We Will Still Need a Song" http://www.youtube.com/watch?v=KGxN5zvlKlU

Grace Potter and the Nocturnals - "Mr Columbus" http://www.youtube.com/watch?v=0rWTBfM3y3g

Regina Spektor - "2.99c Blues" http://www.youtube.com/watch?v=JpTDCNBAfeY

Stars - "Take Me to the Riot" http://www.youtube.com/watch?v=sxeIivNDtFU

Hawksley Workman - "The City is a Drag" http://www.youtube.com/watch?v=Rb-h3mBGYDM

Love:

Hawksley Workman - "Chemical" http://www.youtube.com/watch?v=SWOtYWyjyYo

Pilot Speed - "Bluff"http://www.youtube.com/watch?v=ZQiaxckYAgw

Regina Spektor - "Loveology" http://www.youtube.com/watch?v=ky6sPyJIcno

Damien Rice - "Delicate" http://www.youtube.com/watch?v=qeGChOUqQuk

Ben Folds Five - "The Luckiest" http://www.youtube.com/watch?v=GDIVJbetNR4&feature=fvst

Hawksley Workman - "Safe and Sound" http://www.youtube.com/watch?v=UzPOJanh9FU

Sad:

Emma-Lee - "Flow" http://www.youtube.com/watch?v=-CohgcAv8dI

Hawksley Workman - "Oh You Delicate Heart" http://www.youtube.com/watch?v=ByL2UByb1a8&feature=related

William Joseph - "Homeward Bound" I couldn't find a copy of it, but it's a beautiful song and you really ought to try to hunt it down!

Rachael Yamagata - "Reason Why" http://www.youtube.com/watch?v=2P798LLHcQY

Hawksley Workman - "Don't Be Crushed" http://www.youtube.com/watch?v=Ngd5qXwUanY

Soothing

Tom Waits - "Time" http://www.youtube.com/watch?v=B0Owl_X-m8I

Vienna Teng - "Nothing Without You" http://www.youtube.com/watch?v=a1pgiQUlwbM

Kate Bush - "The Man With the Child In His Eyes" http://www.youtube.com/watch?v=EHJGIn1WyDY

Chantal Kreviazuk - "In This Life" http://www.youtube.com/watch?v=6jX7i0MG0uk

Spooky:

Tom Waits - "Clap Hands" http://www.youtube.com/watch?v=cvMy1xOh6cw

Stars - "Your Ex-Lover is Dead" http://www.youtube.com/watch?v=55FMOJMhV9s

Triumphant

The New Pornographers - "The Bleeding Heart Show" http://www.youtube.com/watch?v=8uRi6SGPdCM

Josh Groban aka Hotty McHotterton of Hotsville - "You Are Loved (Don't Give Up)" http://www.youtube.com/watch?v=EGLSk3AVcUU

Hospital Music (Which is probably Sad^10, just a warning):

Regina Spektor - "Laughing With" http://www.youtube.com/user/ReginaSpektor#p/c/45FE615740733CF8/0/-pxRXP3w-sQ

Tina Dico - "Nobody's Man" http://www.youtube.com/watch?v=Vpy-eN6uBz8

Pilot Speed - "Alright" http://www.youtube.com/watch?v=8QJFnBfmpMc&feature=fvst

Repo! The Genetic Opera - "Genetic Emancipation" http://www.youtube.com/watch?v=h82-6HVueMw

Natalie Walker - "With You" http://www.youtube.com/watch?v=iXx3Trg8Nfs

There you have it. There are so many more out there, but those are some of my absolute favorites. They brighten my day no matter what my mood. Hopefully they'll lift up the spirits of you folks as well, even for a couple hours.

Also, I am quite fond of Hawksley Workman. It's a Canadian thing. I wear the badge proudly, and by badge I mean handful of pins I got at his last concert in Red Deer that decorate my jacket and posters on my wall and something called a 'Restraining Order' whatever that is.

Later, Scoliotics!

Scoliosis Meet Up Event

2010-11-30T14:16:00.000+01:00

Yesterday we Steven and I decided to organise a Scoliosis meet up event in London so we can all get together, have a chat or a rant, share experiences and generally just chat to another person with Scoliosis and put faces and cuddles to names, considering we have all been networking together for some time on the internet we felt it was time to see and touch each other in the flesh.

We would like to invite anyone with Scoliosis inside or outside the UK to join us, we have yet to confirm the venue but as London is within reach of most people we have chosen that as our destination, we are looking for somewhere we can sit down as a group eat, drink and be merry together :)

If you have any suggestions on a venue then please be sure to comment here and tell me why the venue would be a good choice so we can have a look and perhaps send a Londoner on a scout for us hehehehe!

Look forward to meeting fellow Scoliotics in February and here is hoping we can build our meetings to great levels and really start making a difference to us all!

Simone and Steven

Life after Lyrica & Shennanigans!

2010-11-29T17:29:00.000+01:00

Sorry for not blogging for such a long time but I notice Kathleen has been keeping you busy - good girl!

We went for a short holiday in Cyprus which was also for a wedding and then we joined our good friends for a week's cruise which had been booked for some time, since coming back from those holidays I have been trying to keep my workload to a minimum and doing what I can to help those in the scoliosis community, plus we now have the batch of wristbands which have started circulating so thanks for those orders ladies and gents and once again thanks for the support for our campaign on scoliosis awareness!

I started on Lyrica 12th July, 2010 because I couldn't cope with the pain anymore, I was spending more and more time in bed again and having a few teary days so I crossed the bridge for nerve pain relief, well after 2 months of taking this expensive drug I decided I needed to stop so on the 21st September, 2010, I quit the Lyrica, I didn't slow down my dosage I just stopped, yes I know I should have weaned off but to be honest I just wanted out, I didn't like who I was becoming, my memory was just awful, was struggling to remember why I was in a particular room and what tasks I should be doing! I constantly felt drunk and light headed, yeah the pain was gone but I think so had my brain so no wonder I couldn't feel anything, my whole body was numb!

So I am now 2 months past this date and I feel much better and do not need the Lyrica, although my GP has given me Gabapentin should I decide I need some help in the near future. However, since coming off the Lyrica the pain has not been as bad and I have not felt like I needed the drugs - so, I need something explaining to me.................. how can 2 months ago it be that I needed support for my pain, yet now I am managing to cope once more? I just do not understand it, when I started on the Lyrica I couldn't cope and I wanted it all to end and NOW, yet here I am 4 months down the line and not requiring those pain killers, did I make the pain up, has something else changed in my body so the nerves are now sitting in a much more preferable position? Whatever, the case, I really do not want the pain levels to come back as hard as they were 4 months ago - here is hoping I can stay on an even keel, look after myself, lose a bit more weight (which cannot do the back any harm!) and keep drinking wine! hahahahaha

Chris and I are planning a move to Devon in 2011, so this has been exciting for us and we have been spending a lot of time making sure our house looks the part and keeping the garden in check so this has also kept me very busy and I can almost not believe it is nearly December! I am a little worried about the move, we have spent a long time coming to Spain over the years and although I wanted to be here more because of the weather and the swimming, Spain has now lost its appeal for us and the healthcare in Spain for people with Scoliosis is not ideal and as we are UK taxpayers I might as well get some benefits where Scoliosis is concerned, such as a good Yoga instructor, Physiotherapist and at least yearly check ups with the surgeon, something that is not available to me here. The move worries me because I am not sure how I am going to manage, we have a lot to pack, I arrived in Spain with a rucksack and now have animals, cars and properties LOL, so a lot to be sorting, packing and selling!

A great bonus for me when we finally get back to the UK is the charity work I will be able to get involved with, my involvement with Scoliosis can increase, I can arrange events and sell more products from my website because I will be able to stock them so I think my Scoliosis future is looking much brighter and as always - TWISTY! ;)

I have just added stock of the cool and heat gel bags to the ScoliosisNutty range of products we are starting to gather, these cooling and heating bags are an ideal way of warding off pain, the blue one is for cooling and will go nicely in the freezer, with the red one being the heating bag and heats lovely for placement on the body where heat is required. Next year I will be ordering the stick on patches for the back but we need to order 3000 to get a price that is competitive and as we want to sell each one for under a quid to make them affordable, we need to get Christmas out of the way before we commit to the kind of money we need! It is of vital importance to me that we sell products that do help aid pain relief and are affordable for the community.

Thanks for listening and at least this post was a little more cheerful than the last hehehehe, for now my pain relief consists of heat pads and microwave wheat bags, keeping heat going into the muscle so I am nice and supple, it helps ward away the aches and pains, especially at this time of year!

"She was just calling to make sure you're not dead. We told her you weren't. She seemed pretty happy."

2010-11-25T07:53:00.003+01:00

Greetings, fellow Scoliotics!

As some of you may remember me mentioning, I'm currently a college student in Lethbridge, Alberta (that would be in Canada for those of you not in the 'know.) And I am proud to announce that just a few days ago the town of Sundry, also in Alberta, was named the coldest place in the world. That's right. The single coldest place in the world. Ahead of both poles and Russia. You may be wondering if that has any effect on Lethbridge and I can tell you now, without a shadow of a doubt, that yes, yes it does.

And what do insanely cold temperatures do to a fused/arthritic spine? Make it hurt. The phrase 'tearing my spine out with a rusty hook' is used perhaps a bit too frequently by myself, but I can say without hesitation now that I have officially reached that level. The hook is out, the bathroom prepped, the roommates warned. Don't try to stop me because I've lost my mind and this is the only solution.

Oh, also drugs. Drugs are also a solution.

So, for the last two weeks essentially, I've been under self-imposed house arrest. Not because I was lazy or weak or didn't have the courage to go outside and face the -30 degree weather plus wind chill, but because I had reached a new level of sore that I imagine is only experienced when one has either done something really terrible and is being punished by some higher power (lets say, for example, you somehow managed to get your hands on two adorable puppies, some asbestos, and thirteen hand grenades. That sort of thing that requires punishment), or, alternately, you have an arthritic spine. Fortunately for me it is the latter. Or would that be unfortunately? At this point I'm so doped up I'm not even sure. All I know for certain is that I have a test tomorrow for a class that I haven't been to in two weeks.

Why am I not studying now? Because I felt the need for some therapeutic blogging, and also because something was mentioned on the 'How to Look Good Twisted' facebook page that I absolutely must address before I forget about it. Here is goes...

Acknowledge, for a moment, that the art of letter writing is dead. Very dead. So dead, in fact, it has begun to release a funny smell from the deep freeze in the basement and should probably be dealt with before your folks come visit for the holidays and wonder where Steve, your boyfriend- I mean, before they wonder where the art of letter writing has gone. It is that much dead, and I think we can all agree, that is about as dead as something can become before it is resurrected and then killed again.

We rely on emails or text messages (I have no time for cell phones and don't own one thank you very much. I'm certainly not going to risk getting a tumor in my head just so someone can say "omg, wut a day!!11 totally syked 4 clubs 2nite!!!!111") and with those as our primary forms of communication, we've gotten lazy. It's so easy to call or email a person that the are of communication itself is laying on the bag of frozen peas right underneath the are of writing letters.

However, there is one thing that remains absolutely certain. Hospitals = get well soon cards. I don't know about the rest of you but I have two shoeboxes FILLED to the brim with 'Get Well Soon' cards (or GWS's as I shall refer to them from this point on) plus an epic GWS poster that my grade 8 classmates made for me when I went in for surgery the first time. The fact of the matter is medical adventures seem to be the only reason people both to go out and buy stamps these days, and those that do really aren't aware of the impact these cards can have on those of us who are spending our isolated days in the hospital bed counting ceiling tiles and calculating the square footage of the room in our heads.

We've got a nice little community going here, thanks to Simone, and because of the prevalence of scoliosis, it is constantly growing and there is always someone getting ready for another surgery. Now, not all of us have a grade 8 class willing to make an epic poster with multi-coloured GWS messages splattered all over it, heck, sometimes we don't even have a familial support system to hold our hands during the hard days. The one thing that we all have, without a doubt, is each other and our shared experiences as a group.

So I propose a GWS card program (which may or may not be a lovely excuse for pen-pal letter exchanges!) I don't know about you, but I'm okay spending three or four dollars on a GWS card and sending it across the world, knowing that it might just brighten one of your days (and I choose really funny cards, so they better make you split your stitches!) Because we're such a tight-knit community, we should be able and willing to spend a couple dollars and a few minutes to send out a card to someone we've never met, all in an effort to brighten their day. This act, perhaps unimportant to some of you, can be vital to others, especially those who are experiencing their first surgery, or are particularly younger than the rest of us.

Now I haven't ironed out all the details yet, but I'm willing to take charge of this to see it happen. Those who are going under and hoping for GWS cards supply the rest of us with addresses (home ideally, although I can understand that's a bit unnerving for some of you, in which case emails could be an acceptable replacement), and leave the rest up to us. There's something delightful about receiving such a card and knowing that, at least for a moment, you and concern for you was the sole thought in the sender's mind.

Ideally I'm hoping we'll run this through the Facebook page, simply to ensure security, seeing as how any average joe can read the blog, but one must sign up for FB. The sender may or may not supply a return address if they choose. Like I said before, it would be a good excuse for a pen-pal project. Alternately we could also look at a card chain, where I would buy one big card, write a note in it, send it along to the next person who writes another note and then sends it along to the next person, and so on and so forth, until it reaches its destination! There are many ways to go about it, and I think it's something we as a community ought to consider. I know I value each and every one of the messages I've received over the course of my surgery. Specifically the one from a dear friend in high school (story time!)

It was our graduating year and I had to have a surgery over Christmas, a right thorocoplasty, plus hardware removal. It was fairly average, all things considered. Before I left I got homework from my English teacher, who piled me up with books to read while I was in the hospital; homework from the english lit teacher, who had to approve of said books (and then had to deal with me having a panic attack and break down); said goodbye to my friends and went on my merry way.

Because we were still in BC at the time, and my surgery would be in Calgary, Alberta, my recovery would be in Red Deer, about an hour and a half away from Calgary, where my grandparents live. I wouldn't even be home for the holidays to see my friends, and considering it would be probably the last time we'd all be together, I was a little disheartened.

For those of you that don't know, a thorocoplasty (spelling is probably off. I'm doing it phonetic-style) is where they cut through ribs and press them down to decrease the infamous 'hump' that comes along with scoliosis. The major worry during it is puncturing of the lung. It's fairly common, but needs to be carefully monitored. I went into the surgery knowing that I would be waking up and taken to intensive care, just to ensure my lungs were cooperating. And heck, I was getting driven around in a hospital grade steel carriage; what better way to travel when you're half unconscious and drugged out of your mind?

So the surgery happens, I wake up in post-op, successfully wiggle my toes as I had three times previously, and was taken to intensive care. I wasn't there long before a nurse came in and handed me a piece of paper. I was too doped up to read so she relayed the message to me. This friend, my best friend really, had called, from a different province, during school hours, from a school phone, to find out what had happened and if everything was okay.

"She said she was checking to make sure you were alive. We told her you were, but obviously we couldn't say anything else."

And all the paper said, this little square of paper, was "8:30 am. Kathleen - Cindal says Hi!"

I still have that little square on the wall beside my bed back home. I can't ever express the importance of that to me. That someone would go out of their way to do what must have seemed like so little to them, but so major to me. I will forever treasure that paper because it reminds me no matter how miserable I feel because of the cold, or arthritis, or whatever, it is the little show of love that brightens your whole day.

During my fifth surgery, also in winter, mom and I had finally moved to Alberta. Calgary was pretty much snowed in, and my best friend in Red Deer was going to drive down to visit me. He didn't end up doing it because the roads were so bad, but when I finally saw in back at home he had a giant teddy bear waiting for me (and a very gentle hug). The same with my other best friend (whom I now live with in Lethbridge), she couldn't come to visit because of the roads, so she called and got to listen to me in my drugged up state talking about whatever, I don't know, I imagine it was fairly amusing for her.

The point, my friends, is the simplest example of love changes your whole outlook of your life at that moment. And I think we could all use that once in a while.

Keep warm!

Kathleen

PS: I should probably study for that test now, huh?

Reflection On Experience

2010-11-16T23:45:00.003+01:00

Greetings and Salutations fellow Scoliotics!

Life has been fairly hectic lately, with an oddly high ratio of disagreements between myself and the people in my life (more than willing to admit I am half responsible for all of them. Half. Because it takes two, you see?) So I thought today I would sit down and do some therapeutic blogging about the detrimental effects, something like scoliosis, or indeed any medical problem, can have on a person in a psychological manner.

Ignoring the many psych terms I've learned over the last three months (although I like to think my psych prof would be thrilled if I even attempted to use them) the effects of scoliosis can be summed up thusly:

They suck.

I'm also willing to suggest They stink, They're driving me mad, and the often thought of but little used Argh!

Growing up with scoliosis during the time of adolescent development gave me a fairly negative outlook to the support systems that extended beyond my family. Friends were pretty useless. That's not to say they didn't care, I think they genuinely did, but hey, when you're a teenager you're more inclined to be worried about your own crap, and perspective can often be lost. The same goes for those of us who were suffering from any medical issue during that time, whether it be in the past or going on right now.

Perspective is absolutely vital, but disappears quicker than a snow drift in Chinook country (yes, I'm Canadian.) We tend to forget that outside of our cozy homes, our suburban neighbourhoods, our war-less countries, that people exist with the clothes on their back and nothing less. Don't get me wrong, hearing 'At least it's not cancer' still drives me mad. After all, surgeons are physically moving our spines. That is they are actually taking the spine, a rather vital piece of your body, and actually moving it. Moving it. Sorry for thinking that something like that is sort of intense.

Then again, it isn't cancer. It's a double-edged sword. While they don't always know the cause of scoliosis, there is something they can do about it most of the time, if you're lucky to live in a country with public health care and surgeons with the abilities. That doesn't mean it always ends well. I'm one of the many living examples that it doesn't. But the fact that something can be done, or even attempted, is a plus. Does that mean that I want to sit quietly while people who have never experience scoliosis tell me that it could be worse? Hell no. It probably could be worse, and if it ever get to that mythically 'worse' place that I've heard so much about, they will still insist on telling me "Well, it could be worse. It could be cancer."

So what do we do? We can't exactly beat logic or perspective into a person, and manslaughter is still a crime. All we can do is continue to exist day to day with our chronic pain and pray it won't get worse. It will, that's inevitable, but while I can still live and breathe and stand, I'll do my best to keep perspective.

Don't think I'm discounting all that we've experienced. No one should be allowed to, and of course, they do. But by getting angry with the naysayers in the world who think they're doing us a favor by reminding us once again, that we don't have cancer, all we do is lose our own perspective on our situation.

We get angry because they don't understand what its like. We get angry because they're minimizing our experiences as if they're nothing. We get angry because we have to suffer and these ignorant people don't.

The fact of the matter is that medical traumas, be it scoliosis, cancer, amputations, whatever you want to put in there, all of it, has a level of trauma associated with it. And every person experiences that trauma differently. No one has any right to suggest that the experience is anything less than what it is, and yet here we are, day after day, fighting to find one person outside of our web-circle who's willing to accept that the pain, the loss of our dignity at the gloved hands of total strangers, the never ending surgeries and the miracle cures that are anything but, has come to alter us forever.

We'll never know what sort of people we might have been if scoliosis hadn't become part of us in the most literal way imaginable. Maybe I would have been a sweet girl with a pleasant disposition. Maybe I would have been a cop after all, or pursued my singing to a professional level. Maybe my whole life would be different compared to what it is now if genetics hadn't gotten in my way.

Then again, maybe I'd have been a sweet girl with a pleasant disposition, or a cop, or a pro-singer. Looking at my life as it is now, beyond scoliosis, I know and understand that my life is as it is meant to be, which is a very Zen outlook if I do say so myself.

I guess the point of this post, if I really had to sum up, is that it may suck, and we may be essentially alone in our experiences, but it's those facts that actually make us who we are today. And beyond the chronic pain, I'm pretty happy with myself.

"Of course 18 lbs of books is healthy for my spine! Why would you think otherwise?"

2010-11-02T20:16:00.003+01:00

Hello my fellow Scoliotics (That's right, College has taught me it's all right to make up words as long as I sound confident while saying them. Next time you're out in public, look around menacingly and when questioned, say that you are currently henchmenning. Seriously, it's fun.)

Lethbridge, Alberta is a flat, flat place, with a rather large gaping chasm in between my home and the College. That equates to an hour long bus ride every day to and from school. Don't get me wrong, I'm enjoying my courses and have discovered a new found love for Forensic Psychology, however I do have a bone to pick with the establishment.

Text books. Bad enough that I had to sell off a kidney and 1/3 of my liver just to afford the Human Development text book, but now I, with what I think we can all agree is a bit of a buggered spine, have to haul around five monster text books. Fortunately, not all at the same time, but that really doesn't make much of a difference as the end of the day when the two innocent discs in my lower back are forced to twist and grind and whine back into alignment. Not only am I finding it a less than enjoyable experience, I also have to deal with roommates from hell and that, dear friends, is a rant for another day (although incidentally did you know I'm a terrible person? I learned that on Friday during a house meeting where I was literally stripped of all my self-worth. Sure, I'm hard to get a long with, but only if you're a douche bag. At least I'm aware of my personality flaws thank you very much. Calm down. Calm down. It's okay.)

Apart from roommate issues and the fact that I have finally discovered what it is like to be unable to uncurl from the fetal position, I'd say college is okay. I'm not thrilled about the sociology courses, but that's only because I've discovered this love of Criminals (HA! You know what I mean) and their delightfully evil brains. All this interest and joy is taking up spaces that might have been reserved for sociology and politics, sorry Professors. This joy just got a whole lot better, literally an hour ago, when I discovered the project I have chosen for my research paper (A comparison between inmate segregation in the early 19th century and modern prison systems) has a wealth of information. Don't ask me where this strange love of the criminal mind comes from. I just finished ready a book about Alcatraz and am completely smitten with its history. I think I must have a problem.

But enough about school, on to more important things. Namely, my needing a big mom hug right about now. I didn't realize when I moved that the one thing I would miss most of all was the comforting Mom Hugs I was able to receive on a daily basis whenever my back started to act up. For whatever reason I've had a couple really bad weeks since moving, which I'm telling myself isn't psychological but the result of toting the equivalent of several small sherpas around on my back every day. I've missed more classes than I'd like to admit simply because I woke up in the morning and could just feel the pain creeping in. Those days are the worst, because my inmates -sorry- roommates, (I honestly actually typed 'inmates'. It wasn't meant to be a joke; it just sort of ended up as one) have little to no understanding of what the pain is like. That makes it worse, because when they complain about why I haven't moved this or that out of the way, they honestly can't grasp that walking up fourteen steps is a challenge for me, that every movement of living like this is driving me a little bit closer to the edge of insanity and they will be the first victims when I go for the clever.

Yeah, they don't quite get that, and so I have to grin and bear it and suppress the violent urges as best I can. And all I want is a mom hug. Maybe a mom pity or two. And then I want a mom-tuck-into-bed and I'll be good to go. Let me tell you, I'm the mother of the house, and me hugging myself really doesn't have the same effect.

I'm going to start going to the school shrink, just for the sake of having someone to talk to about this. There's no support system in the house and I really don't feel any better after talking to my mom on the phone. I think after ten, almost eleven years if you can believe that, of living with this, I need to start taking the psychological healing to the next phase. I don't want to be filled with self-pity, nor do I want to slaughter my roommates and hide their bodies under the deck. Mostly because there are dogs and they would totally find the remains and then the police would ask all these questions and I'd have to be all "I don't know, I just live here. I rent the room. It's got nothing to do with me." And really, they aren't going to fall for that.

I think anyone with a debilitating condition can forget the toll it takes on them. I got the wake up call yesterday in Intro to Psychology when we learned about universal and variational human development. Essentially we all engage in the same developmental curve, but when something comes along, say, oh I don't know, multiple surgeries on ones spine, it stops our development as our peers continue. Eventually we have to rejoin them, but we do so without certain skills that our peers were able to develop during our down time. It means there's a lot of catching up to do, and I'm fairly certain I, and possibly some of you, have a tendency to overcompensate. I know I went from being a normal 13 year-old to somehow being 45 and trapped in a kids body. To make it short and sweet, it can screw you up, and we have a tendency to forget, or deny, the effects.

Life is crummy for everyone, we just happened to draw the short straw on the Happy-Fun-Fun-Experiences-of-Life contest. Now, physically we might be at the mercy of doctors and nurses and shamans, but that doesn't mean we have to let ourselves, that is, our minds and personalities suffer because of it. I know I'm obviously letting myself get torn down because the support system that was so consistent for the first ten years of my experience is suddenly gone, and there is nothing in its place. Trust me. My roommates are useless for that. But I can't keep holding it in, or thinking I'm wise enough or mature enough to handle it on my own. Humans need support systems; without it we let the stresses build up, and somehow the very essence of who we are have to suffer. That's probably why I just sat there on Friday night and let five people tear into my personality, because the last two months have consisted of me losing sight of myself.

I can't deal with this on my own; it's not a cry for pity, it's just a fact. Thank god I'm smart enough to realize it now and take some responsibility for it.

And by the way, the roommates are total hypocrites. They whine about me leaving a mug in the sink over night and when I get home from school the sink is full of their dishes?! What the hell. I am so glad I'm not as thick as a block of cement like the rest of them. I am so, so very glad.

Seriously, hypocrites.

Brace technology: derotation brace

2010-10-13T11:51:00.000+02:00

Authors: Theodoros B Grivas, Achilles Bountis, Irene Vrasami1 and Nikolaos V Bardakos

Department of Trauma and Orthopaedics, "Tzanio" General Hospital - NHS, Tzani & Afendouli str, 18536, Piraeus, Greece
Scoliosis & Spine Unit of "KAT" Orthopaedic Hospital, Athens, Greece
The South West London Elective Orthopaedic Centre, Denbies Wing, Epsom General Hospital, Dorking Road, Epsom, KT18 7EG, United Kingdom

Background

The dynamic derotation brace (DDB) was designed in Greece in 1982, as a modification of the Boston brace. It is a custom-made, underarm spinal orthosis featuring aluminium blades set to produce derotating and anti-rotating effects on the thorax and trunk of patients with scoliosis. It is indicated for the non-operative correction of most curves, barring the very high thoracic ones, (when the apex vertebra is T5 or above). The purpose of this article is to familiarize physicians with the DDB, analyze the rationale behind its design, and present the published results of its application.

Description & Principles
The key feature of the DDB is the addition of the aluminium-made derotating blades posteriorly. These function as a force couple, which is added to the side forces exerted by the brace itself. Corrective forces are also directed through pads. One or more of previously proposed pathomechanical models of scoliosis may underline the corrective function of the DDB: it may act directly on the apical intervertebral disc, effecting correction through the Heuter-Volkman principle; the blades may produce an anti-rotatory element against the deforming "spiral composite muscle trunk rotator"; or it may alter the neuro-motor response by constantly providing new somatosensory input to the patient.

Results
Based on measurements of the Cobb and Perdriolle angles, up to 82% of patients remained stable or improved with the use of the DDB. Results have varied, though, depending on the type/location of the deformity. The overall results showed that 35% of the curves improved, 46% remained stable and 18% became worse, as assessed by measuring the Cobb angle. The DDB has also been shown to improve cosmesis (except for right thoracic curves) and leave several aspects of patient quality of life unaffected during use.

Conclusion
Conservative treatment of idiopathic scoliosis using the DDB has shown favorable results. Thoracic curves appear more resistant to both angular and rotatory correction. The published outcome data on the DDB support our belief that the incorporation of aluminium blades to other orthoses would likely improve their efficacy.

Scoliosis Background
Viewed in three dimensions, scoliosis is characterized by a constellation of deformities. Ideally, conservative management of scoliosis should aim at correcting simultaneously the lateral deviation of the spine in the frontal plane, the rotational and the rib cage deformity in the transverse plane and restore the sagittal plane.

Brace treatment should be instituted by means of appropriately manufactured orthoses, capable of achieving a satisfactory initial correction. In addition, the corrective forces must be sustained throughout the entire treatment period.

Dynamic Derotation Braces (DDBs) are custom-made, underarm spinal orthoses equipped with specially designed derotating blades that are set to produce a derotating or an anti-rotating effect on the thorax and the trunk of scoliotic patients. Derotation is defined as the correction of the rotational deformity (e.g. reduction of Perdriolle angle value). Anti-rotation is defined as the prevention of rotational deformity progression. When there is anti-rotation in a progressive curve, the Perdriolle angle remains unchanged during treatment. In other words, progression of vertebral rotation or rib cage rotational deformity in the transverse plane is prevented.

The purpose of this report is to present an overview of the DDB, including the historical background, the biomechanical principles of its function, technical aspects pertinent to its prescription, construction, and the so far published results on its use. The general theoretical principles of conservative treatment with braces will also be presented.

Scoliosis History
The DDB was designed and used by surgeons of the Scoliosis & Spine Unit of "KAT" Orthopaedic Hospital in Athens and the Certified Orthotist and Prosthetist (CPO), Mr. Nikolaos Vastatzidis of Athens. Based on their extensive experience with different types of braces, this group designed a modification of the classic modular Boston Brace, in order to address the rotational element of scoliosis. The first type of brace they developed was called Boston LP (Limited Pressure). Following its short-lived use, this was replaced by the Dynamic Derotation Brace. The new design, introduced in 1982, was based again on the basic BOSTON BRACE, with the addition of a system of light and slightly flexible blades made of aluminium. The construction of the new brace was based on the traditional plaster mould of the trunk of the patient, onto which the heat-treated PVC sheet was applied. The blades were added last and were placed at the highest point of the hump.

Initial results were very encouraging and, with increasing experience of its application, the brace became more elaborate. Radiological and clinical results showed the new brace to be an effective solution to the conservative treatment of scoliosis and provided evidence of true deformity correction, as opposed to mere curve maintenance. Although the use of this particular type of modification of the Boston Brace started to spread because of its encouraging results, formal presentations on its efficacy were delayed.

For historical and ethical purposes, the then "KAT" Hospital team consisted of Dr. P. Smyrnis (former Head of the Unit), Dr. D. Antoniou (Head of the Unit), Dr. J. Valavanis and Dr. C. Zachariou (both spine surgeons and members of staff).

The first official announcement on the use of the Dynamic Derotating Brace (DDB) was made in 1986. This brace is now considered the gold standard for the conservative management of idiopathic scoliosis in Greece. The DDB modules - principles of construction used by CPOs.

The DDB module is a type of Thoracic Lumbar Sacral Orthosis (TLSO). Its main characteristic is that it is supplied with metallic blade/s on its posterior surface which act as de-rotation or anti-rotatory device/s, as defined above.

Today, production of the DDB is based on a traditional cast mould, or on a pre-trimmed positive plastic trunk template produced after laser scanning of the patient, (CAD/CAM technology). A blueprint is thus designed, which is a systematic way of analyzing the curve and applying the appropriate force vectors.

the DDB production can be based on a cast mould.

the DDB production today is based on a pre-trimmed positive plastic template produced after laser scanning of the patient, or raster stereography (CAD-CAM technology).

The DDB is a custom-made, underarm hard orthosis, extending from underneath the axilla to the pelvis figures 3a, 3b. The core of the module is made of one 3 mm-thick piece of polyvinylchloride (PVC), which may have an inside lining of plastazote. It opens at the back and is fastened with three or, more commonly, four straps. The design is tailored to the body habitus of the patient. The waist section should be designed to provide maximal patient comfort.


The DDB extends from underneath the axillae to the pelvis, b: lateral view of a DDB.

The axillary extension lies just below the shoulder. It should be applied to the lateral surface of the upper part of the sides of the thorax, so as to maintain a direct inward force on this. In essence, it acts by shifting the upper part of the thoracic curve. It comprises the highest lateral component of the DDB module.

The abdominal apron is the front part of the module and extends in a way that includes the abdominal area and covers the edges of the sides and the xyphoid process, taking particular care not to impact on the sides. This part is flat on its front surface, allowing rectification of the body in the module.

Several parts of the brace are reinforced with pre-contoured, aluminium metallic bars (of approximately 1.6 cm in breadth and 0.35 cm in thickness) or bars of similar dimensions made of plastic similar to the plastic sheet of the brace proper. For a brace for a right thoracic curve, the right subaxillary metallic bar ascends up to the lateral third right subclavicular region, while the central metallic bar starts from the xiphoid process anteriorly and is turned laterally to the left, merging with the left subaxillary metallic bar placed opposite to the hump.

The two rear side halves ascend towards the upper border of the scapula, and are spaced approximately 5 cm apart when the brace is on. Both of these posterior halves are reinforced with posterior metallic bars (approximately 3 cm in breadth and 2.2 mm thick) along their free edges, starting from the scapula down to the pelvis, figure 3a. The pads inside the brace are also lined with plastazote.

The fundamental characteristic of this brace are the metallic derotating blades, figure 3a. These are rectangular, 2.0 - 2.5 mm thick blades, made of aluminium, (semi-rigid aluminium alloy). One side of the blade is fixed along the posterior metallic bar, while the free end is pre-curved to an obtuse angle, opening outside the structure. The amount of this opening is directly proportional to the magnitude of hump. Upon application, the free end of the blade is inserted under the opposite posterior half of the brace. The position of the blades is determined by the level of the hump: they are attached to the rear side of the brace, at the area corresponding to the most prominent area of the thorax or trunk of the patient (thoracic or loin hump; that is, the blade is positioned by the orthotist on the apex of the hump as it is detected clinically).

The blade covers most of the hump prominence. In longer curves, more than one blade may be required. The usual width of a blade is 8-10 cm and their length depends on the patient's somatotype. Hitherto there is no study to document the angle of the blade in relation to the scoliometer measurement. However, the angulation of the blade is done empirically by the very experienced CPOs.

The application of the brace is completed with fastening of four posterior straps.

Once the brace is finally fitted on the patient, the positioning of the blades can be checked on standing radiographs, especially in relation to their correspondence with the apex of the curve. If necessary, the blades can be easily repositioned.

The derotating function of the blades is accomplished through the continuous application of corrective forces at the pressure areas. At the same time, the two posterior halves of the brace move in opposite directions. The force couple thus created is added to the side forces exerted by the brace itself. The direction of action of the blades may be modified, if needed, by altering the (open outside) obtuse angle of the blades.

The trimline is usually at the level of the clavicle superiorly. It must cover the anterior superior iliac spine inferiorly, to maximize the lever arm controlling correction in the sagittal plane.

The trochanteric extension, for lumbar modules in particular, is designed so as to extend over the greater trochanter on the side of the convexity of the curve. This increases leverage and facilitates overall balance of the trunk, restoring the alignment of the patient back to neutral.

The thoracic extension is designed so as to exert an upward and medially directed force at the apex and below; its superior edge should be in line with the contour of the apical rib. Its height is determined by the individual patient's characteristics.

The antero-lateral thoracic window is meant to relieve the patient's torso. It is located directly opposite to the thoracic hump, extending well above the crest roll, which is placed inferiorly.

The pads are used to direct corrective forces within the DDB system. Their main role is to exert high forces on scoliotic curves. Opposite each force lies an area of relief. They are placed onto the inner surface of the module and apply high pressures at their points of contact with the body.

Curve classification used for prescription purposes

DDB designs are based on the commonly used classification, which distinguishes scoliotic curves into thoracic, thoracolumbar, lumbar, and double major.

Read more on the ScoliosisJournal website or download the PDF

Quality of life in adolescents with IS

2010-10-12T16:43:00.000+02:00

ScoliosisJournal published a new article regarding the determination of quality of life in adolescents with idiopathic scoliosis subjected to conservative treatment.

Authors: Angelo G Aulisa, Vincenzo Guzzanti, Carlo Perisano, Emanuele Marzetti, Alessandro Specchia, Marco Giordano and Lorenzo Aulisa

Introduction and objectives. Physical deformities caused by adolescent idiopathic scoliosis (AIS) coupled with conservative treatment of AIS with orthesis unavoidably impacts on patients' quality of life (QoL). The present study aimed at evaluating the QoL in patients affected by AIS treated with brace. The study also sought to determine the ability of different QoL questionnaires to monitor QoL over the course of treatment. Materials and Methods. Data were collected in 108 consecutive patients (96 females, 16 males) affected by AIS admitted to the outpatient orthopaedic clinic of the Catholic University of the Sacred Heart in Rome (Italy). Patients were subjected to full-time (i.e., 22 hrs per day) conservative treatment with the progressive action short brace (PASB), the Lyon brace or a combination of PASB + Lyon brace. Three instruments were used for QoL determination: the Scoliosis Research Society 22 (SRS-22), Bad Sobernheim Stress Questionnaire (BSSQ) and the Brace Questionnaire (BrQ).

Results

A significant correlation was detected among the 3 scores (p<0.001). The BrQ possesses a higher capacity to detect changes in QoL in relation to the patient gender, type of brace, curve severity at baseline and at the completion of treatment, and curve type. Overall, boys displayed a higher QoL than girls. In all 3 questionnaires, higher QoL scores were determined in patients treated with the PASB compared with those using the Lyon brace. QoL scores were significantly correlated with the curve severity. Higher QoL scores were obtained by participants with thoraco-lumbar curves as compared with those with other curves.

Conclusions

The 3 questionnaires are effective in capturing changes in QoL in AIS patients subjected to conservative treatment. However, the BrQ possesses a higher discriminatory capacity compared with the other questionnaires tested. PASB-based treatment is associated with better QoL than the Lyon bracing.

Download the full PDF on this article about the determination of quality of life in adolescents with idiopathic scoliosis subjected to conservative treatment.

Scoliosis: Life, Support & Friends

Two and a half years later...

Conservative Treatment of Idiopathic Scoliosis

Annual 3rd Move-athon Halloween

Surgical & Conservative Treatment of Patients with Congenital Scoliosis

Conclusions Few cases indicate the long-term results of surgical techniques, in the natural progression of scoliosis. Similarly, few cases have been reported on the influence of conservative treatment.

Scoliosis and Dental Occlusion

BackGround Idiopathic scoliosis is a deformity without clear etiology. It is unclear wether there is an association between malocclusion and scoliosis. Several types of occlusion were described in subjects with scoliosis, mostly case-reports.

Objectives The aim of this review was to evaluate the type of occluslins more prevalent in subjects with scoliosis

Selection criteria All randomised and controlled clinical trials published as full papers or abstracts which reported quantitative data on the outcomes malocclusion in subjects with scoliosis.

Data collection and analysis Data were extracted without blinding to the authors, age of patients or type of occlusion.

The Method of Katrina Scroth

Medial Branch Blocks and a Reason to Make Friends

Low Grade Isthmic Spondylolisthesis; A Randomized Controlled Study

Background

Results

Conclusion

More than the Sum of My Parts

The Loss Of Life

A Hospital Survival Guide

A Twisted Affair

Scoliosis checks in UK secondary schools

"There is increased grinding and popping in the sagittal region." "Sagittal? But I'm a Cancer!"

"The time has come," the Walrus said...

Oh my holy ghost.

Happy-Non-Denominational-Winter-Holiday!

The Healing Power of Music

Scoliosis Meet Up Event

Life after Lyrica & Shennanigans!

"She was just calling to make sure you're not dead. We told her you weren't. She seemed pretty happy."

Reflection On Experience

"Of course 18 lbs of books is healthy for my spine! Why would you think otherwise?"

Brace technology: derotation brace

Quality of life in adolescents with IS

Conclusions
Few cases indicate the long-term results of surgical techniques, in the natural progression of scoliosis. Similarly, few cases have been reported on the influence of conservative treatment.

BackGround
Idiopathic scoliosis is a deformity without clear etiology. It is unclear wether there is an association between malocclusion and scoliosis. Several types of occlusion were described in subjects with scoliosis, mostly case-reports.

Objectives
The aim of this review was to evaluate the type of occluslins more prevalent in subjects with scoliosis

Selection criteria
All randomised and controlled clinical trials published as full papers or abstracts which reported quantitative data on the outcomes malocclusion in subjects with scoliosis.

Data collection and analysis
Data were extracted without blinding to the authors, age of patients or type of occlusion.