Scoliosis: My Story

Snowed in! Snowpocalypse begins. And, is there anyobody out there??

2011-02-02T15:21:00.002-04:00

Wow, what a beautiful winter wonderland outside! The big storm has hit us, after making its way across parts of the US and Canada. Reminds me of the famous 1976 Groundhog Day storm, but I don't think this one will pack as much punch - at least fortunately, not for us in Nova Scotia. I might write back tomorrow saying I was wrong, haha, if the power doesn't go out for too long that is.

But this is a Scoliosis blog, not a weather report, so enough of that!

I've decided to start a facebook group, hoping that will help get this blog out there. For now, it is firmly lost in the myriad of websites that exist in cyberspace. Luckily, the name I have always used for my scoliosis projects is not already taken, though I did notice one or two other names that are very creative and worthy of note. I will give short reviews and links to those in the near future.

So far, although there seems to be traffic from various corners of the globe arriving on my blog, no one has left me a comment. How lonely is that? My poor lil blog is going to develop a complex.

How's about a hello and a shout-out from where ever you are?

I'd love to know who comes by. Just wave, across the vast cyber expanse that separates yet unites us. Lemme know you are there! I won't bite.

:-)

The Johns Hopkins Hospital

2011-01-22T19:52:00.000-04:00

I had my 3rd and last surgery at the Johns Hopkins Hospital in Baltimore, Maryland. It's supposedly one of the top hospitals in the world, and I believe it. If you have scoliosis that requires surgery, please look into being treated at this hospital.

I would like to get to know others who had back surgery there. Send me your stories if about your Johns Hopkins experience.

To find out more about this wonderful hospital, here are some links you can click:

1. The Johns Hopkins Hospital Website

2. Johns Hopkins Hospital on Wikipedia

3. Johns Hopkins University

4. Who was this Johns Hopkins anyway?

My Story - Diagnosis and First Surgery

2011-01-22T00:07:00.003-04:00

When I was a little girl, life was fairly normal. My parents had enrolled me in a figure skating class at an early age, then I was a member of the girls softball team, and despite not really liking sports, I played soccer and dodgeball at school. I went to summer camp, I was enrolled in swimming lessons (although I was terrified of water and never learned to swim, but I digress!). During the summer, I went to the beach, played games with my friends, rode my bike..all the normal kid stuff. In the winter, my favourite activity was sledding down steep hills and going skating. Then, in 1985, it all changed. I was 12 years old and thought I had my life ahead of me. It never occurred to me that I would be putting my skates away for good that year, or that that summer would be my last time going to the beach..it never crossed my mind that I would never again be able to enjoy the feeling of tobagganing at full speed down the hill, or that I would never have a chance to go on a roller coaster, or go skiing or horse-back riding. No one told me. I wish someone had told me.

This is how it started. One evening, I was sitting at the kitchen table doing my homework, when mom noticed something seemed wrong with the shape of my back. She probably thought I might have been slouching, so she told me to straighten up. But I wasn't slouching, and when she looked closer, she could tell there was some kind of lump protruding from my back. She made an appointment with the family doctor. After looking at me just briefly he suspected I had a back disease called "Scoliosis" and told us I would have to go see the specialist. At this point, I don't think my parents had any idea what Scoliosis was. I certainly didn't. My back did not look very crooked back then. I had no reason to be worried.

The specialist was Dr. Douglas Brown. He worked at the IWK Children's Hospital in Halifax, and came down to a clinic at the Yarmouth hospital every month. So thus started a long habit of going to see Dr. Brown at the clinic. After my first appointment with him and my first xrays, he said I had to have an operation. He explained that it was too late for a brace. I think I had a 52 degree curve. I wasn't fond of him. He was a cold, intimidating man, who stood at least 6 feet tall and 'never smiled'. I don't remember what I thought of my upcoming surgery. I guess I was scared, but believed that it was just a one-time obstacle in order to stop this disease, whatever it was. My parents thought the same way, I think. The first memory I have of realizing what this was..is when I took mom's huge medical encyclopedia and looked for Scoliosis, to see what they had to say about it. I remember looking at the pictures of people who had it. They were so distorted and crooked! They looked like side-show freaks. I thought to myself that I would never be deformed like that because I was going to have surgery. I didn't realize that one day, I would look exactly like those awful pictures.

I had the surgery in June of 1985. I was in no way prepared for it. I'd had minor surgery to fix a lazy eye when I was 5, and another minor operation to remove a thyroglossal cyst when I was 7, so I was somewhat familiar with hospitals and being 'put to sleep'. The cold and aloof Doctor Brown certainly did not assuade my fears or explain what I was about to endure. I was terrified of needles to start with, so I ended up traumatized by having to have a blood test before the surgery. What happened afterwards, for the next 14 days or so, was hell. Daily needles and blood tests. Each day a new terror. Needles in my thighs, butt, and arms. Add to that the dreaded daily finger-pricks and you have my worst nightmare come true. Plus, the pain as the anaesthetic wore off. Then the shock of realizing I had to learn to walk all over again. The horror of being hooked up to machines when I woke up, of having IV's and blood transfusions stuck in me for days..the pain of having them change the IV needles and of course, the daily pain of the nurses changing the dressing on my back. I thought that the pain of having them take the dressing off was the most pain I had ever experienced. It was so bad, it made me scream. It felt like they were ripping my skin off! There were other horrors: the constant cries of agony and pain coming from the other rooms, from the other patients on the ward. Then there was the loneliness and feeling of vulnerability at night, when everyone left. Calling for nurses and having no one come. Pushing the nurse button forever before someone showed up with pain killers.

The first few days after the surgery were really hard. It's impossible to describe the feeling to anyone who hasn't experienced it. Imagine being totally unable to move. Imagine being in pain, and feeling like you were totally stiff and wrapped up in bandages like a mummy. Then comes the day when the nurses have to get you to sit up for the first time. That was so scary..my whole body felt as heavy as stone! I was horrified that I didn't have the strength to sit up. And once they were holding me up, I felt nausaus and light-headed, yet at the same time pain and heaviness, like I was in molasses. It takes a week of therapy and walking slowly before you can walk again..maybe more than a week. And those first times, your head feels like a heavy rock and everything hurts. You can't move your neck to look behind you, or look up..and you can hardly move your arms either. It's a really scary experience. Another painful aspect of hospital stay is that they change the bed sheets every day. They did it two or more nurses at a time, I think, and with great difficulty. Being pushed and pulled and having the sheets taken from under you while you are in excruciating pain is not a pleasant experience. There's also the complete sense of vulnerability that comes with having a cathater, being unable to brush your own teeth, and having to use a pan or bowl for your bathroom with the help of strangers.

Another very bad memory from that hospital stay is when they put on my cast. I was brought to this sterile room and hauled onto some kind of steel contraption which represented a bed but was nothing more than cold, metal bars. I was in a great deal of pain and could still not move much without help. The doctor and nurses lifted me off the stretcher and onto the bars. Then Dr. Brown started putting some kind of very hot liquid all over my stomach. He patted and molded strands and plaster until it hardened and I felt like I couldn't breathe. The cast started to tighten and I panicked. It made me cry, and scream..and his gruff attitude didn't help. I kept telling him that it was too tight and that I couldn't breathe, but he paid no attention to me. It took a long time for me to calm down and get used to being stuck in this thing. Not only was the way it was put on me traumatic, but I had to wear it for the whole summer. Little did I know, the way in which it is removed is equally as traumatic for a 12 year old.

Now I jump ahead to explain what happens after the surgery. I think I stayed in the hospital 14 days. Like I said, I had to wear that plaster cast all summer. It was itchy and uncomfortable. My clothes didn't fit well on its bulky shape either. When I went back to get the cast removed, it was quite a scary event. I was once again hauled onto that steel bed and the cast was literally sawed off. The noise that the little round saw made was enough to send me into hysterics, not to mention the knife which he was also using to pry open the cast. Another painful event to close a nasty chapter of my life? Hardly. It was only the beginning.

Surgery #1
Age: 12
Date: June, 1985
Rods: Harrington Rods
Degree: 52 degrees, I think
Hospital: IWK Childrens' in Halifax, Nova Scotia
Surgeon: Dr. Douglas Brown, retired in 1998

© Copyright Lise Robichaud 2011.

Story From G. in Upstate New York

2011-01-19T19:06:00.000-04:00

I was nine years old, and my brother was 17, when the two of us were being examined by a doctor (I don't remember what kind or where; I've always remembered it as being one of those school examinations). The doctor told us we both had scoliosis, and we needed to be seen again in a short time (probably a few months). While my brother's scoliosis apparently vanished, mine got worse.

A short time after that, I was seen by a different doctor (probably an orthopedist) who took x-rays. He asked me if everything was all right at home. I told him yes, because I didn't know that my home life wasn't "all right" and normal. In fact, life was hell. My parents had divorced a year or so before then; I'd hardly seen my father as a kid, since he worked 16 hour days six days a week and anyway, he had a short temper and never wanted children anyway, and he alternately beat and sexually abused my older siblings. Not only that but my grandfather (who, along with my grandmother, would spend every summer living in our house and disrupted everything in our lives by doing so -- they would move into my older sister's room, she would move into my tiny room, and I would be relocated into the open den downstairs on a fold-out couch for the duration of the summer) molested me on a pretty constant basis, my brother and sister fought violently together (my sister once threw his bedroom door out of thte house into the front yard because he made her so angry), and my mother was alternately temporarily employed or on unemployment and occasionally drinking (which became a nightly occurance over time). There was no peace, there was little love, there was certainly no money and no hope ... just my ability to shut down my emotions and grow into a terribly insecure, frightened little girl who craved love, attention and even basic friendship.

To this day I regret telling the doctor "yes," because maybe my family could've gotten some help. Something might've been done. To this day I have to remind myself that I was only a little girl, not responsible for everything around me! But I still believe that scoliosis is in some way connected to one's emotional and spiritual health ... as one nurse put it, "What else can you expect when you put the weight of the world onto shoulders that weren't made to bear it?"

So anyway, I had x-rays taken and apparently my curve (or curves) was 40 degrees. I never knew if my curve was single or double, left or right, or anything like that. I was told only what I needed to know. The other thing I was told was I would have to wear a brace for the next four years ... which meant until I was in eighth grade! That was a million years in the future, and I grew sad. My mother also began taking me to a chiropractor, who was a very nice woman, every day for the next umpteen months or years, I don't exactly remember. I remember my favorite adjustment was the "hug" because I needed every single hug I could get.

My mother bought me a book called "Deenie" by Judy Blume, and that was supposed to take care of any questions or concerns I might have. I learned from that book what scoliosis was, and how it was treated. A short time later, I remember seemingly hanging from the ceiling at a hospital as I was wrapped up like a pinata with plaster... and waiting for it to dry ... and I remember my terror that the sharp whizzing blade intended to merely cut the plaster and free me would somehow dig right ... into ... my ... spine. Thankfully that didn't happen, and I had to wait for my brace to be made.

My brace was from my neck to my hips. Made of flesh-tone acrylic with four or five Velcro straps in the front and air holes dotted throughout, I was told to wear it 23 hours a day and to do certain exercises during that one free hour. I did almost exactly as told ... well ... I couldn't do the exercises very well, I mean I was never able to do a single sit-up in gym class without a special mat on the floor, how was I supposed to do exercises on the floor of my tiny cubicle of a bedroom?! The brace got very hot and uncomfortable, especially in the summer, and it was kind of strange. It was unnoticeable under my clothes, and most other people didn't know I wore it. I didn't tell anyone about my experiences because I was far from popular, so who would care? So like everything else in my life, I didn't tell many people (I remember telling one girl that I was wearing a brace and she said oh really? And punched me as hard as she could in the cervical spine area).

Four months later, I was seen again by doctors and x-rayed yet again (I became a pro at taking x-rays). To everyone's astonishment, my curvature went from 40 degrees to .5 degrees in those four months! The chiropractor to this very day refers to me as her chiropractic "miracle case." I was released from the brace but my chiropractic care continued.

Fast-forward about 15 years ... I was in a serious car accident at age 14 that left me with some discomfort/pain in my cervical spine if I sat in a chair with poor support or walked around the mall for too long. Then at age 25 I was in a *really* serious car accident that gave me serious whiplash and re-injured my cervical spine, so that three years later I am still working to strengthen the muscles in that area. When x-rays were taken following the second accident, it was noted that the scoliosis had returned, but it wasn't seen as a major problem. I was not told to what degree etc., but I'm sure it's worse now ... my hips are uneven again, or is it just that one leg is three inches shorter than the other? Nobody can agree. I just know I can't wear high heels (although why would I want to, I'm 5'8" when I adjust for my uneven hips), most skirts are crooked on me, and my shirts never "sit straight" on me. I have a lift in my shoe but it's not nearly "tall" enough, but it does help some. Sometimes people notice, and I tell them my hips are uneven, end of story.

I know I was never self-conscious about scoliosis, probably because I never looked in mirrors when I was nine and I wasn't in the slightest concerned about what other people thought of what I was doing or me as a person ... I have no idea if my back looked odd or anything. Scoliosis was simply one more thing I had to go through as a child. In fact, it never occured to me to do any reserach on the internet about it until my wonderful friend shared her link with me :) I've learned a lot about the disease in the short time I've had the link! Thanks.

By G. in upstate New York, 2001.

Leigh's Story

2011-01-19T19:01:00.000-04:00

Hi, my name is Leigh and I am 14. My story, thank God, is a very good one.
When I was 5 my mother noticed that one shoulder was higher than the other.
She decided that it was normal in a growing child, I was her first child.
Well when my right shoulder blade stuck out of my back, she was worried. So
she took me to the doctor who said that he wouldn't be surprised if it was
scoliosis. Well, I had no idea what was going on, I was too little. Next
thing I know, another doctor is looking at my back and smiling sadly at me.
"Have you ever had an x-ray of you back before?" He asked me. I had no idea
what he was talking about but luckily my mom knew so she told him I didn't.
He took about a million x-rays and then we sat down and talked. He asked me
if I had had any bone difficulties. I had. I had hip displacia when I was
born even after the labor was induced when I couldn't stay in the womb any
longer. My teeth are also behind schedule. He realized that my bones matured
VERY slowly.

Next he told us that I had scoliosis. He said that my I had a curve that went
to the right. (I had no idea what this meant) Well, they decided that it was
nothing worth looking into (never let ANYONE say that!!) and that it would go
away (my curve was only 18 degrees).

That was the last I heard of it for 6 years. Then in sixth grade the nurse
spotted it. I went back and, very surprisingly, my curve turned into a
double thorac-lumbar curve. It had changed too much for my doctor's liking. I
went under chiropractic care and I had some stretches to do. He discussed the
possibility of a brace.

I was supposed to go back in 3 months but my mom went into surgery and it
wasn't possible. Now my chiropracter has been worried and is switching me to
a different chiropracter. He says my lumbar muscles are fighting the
treatment. I, most likely will be fitted in a brace. But, I haven't had the
time to get x-rays yet, or the nerve. I am a very athletic and active
teenager. I run 4 miles a day(I love track) I play basketball, softball, and
checkers(just kidding about checkers.). I help out recognizing birds for bird
lovers at a not-so-local environmental park. I also ride horses and sing. Not
to mention the idea of starting high school with a brace is scary. Now I'll I
can do is worry and wait.

Like I said this is a good story cause no surgery is mentioned, yet.

By Leigh, Spring 2000

Hadley's Story

2011-01-19T18:47:00.000-04:00

My name is Hadley. I too, had scoliosis. My mother noticed it when I was 12. I went to the doctor and we were told to wait. Three months later when I returned my curve had progressed nearly 15 degrees. I was put in a brace for over a year. It was incredibly painful to go through Jr. High as a "freak." But the brace didn't work, and all the emotional scars it had brought me were for nothing. I was told I'd have to have surgery. By that point my curve was over 60 degrees. I was optimistic. I thought it would be fun. I thought I'd get lots of gifts and visitors. But it didn't turn out that way.

     My first surgery took place on June 28, 1999. It lasted 14 hours. The doctor cut through my side, corrected my kyphosis, and removed a rib. Then an incision was made down my back to correct my two curves. 2 metal rods were put in. My doctor said it was the most severe surgery besides Spina Bifida that I could go through. I was in the hospital for a week and then I was sent home. After my surgery I was in more pain than anyone can ever imagine. At home it was terrible. I would scream and sob for hours on end and sank into a severe depression. After only 3 days at home, I went to see the doctor. I was losing a lot of blood and was told from the complications I would have to have more surgery. I was in the hospital again for another week. During the previous weeks I had a steady stream of visitors and stacks of gifts and flowers. But as the weeks went by my friends seemed to forget about me. I was depressed as I thought of them leading normal teenage lives and I had to go through this hell. My incision in my back wasn't healing and I had to have a third surgery.

     It was the day before my 15th birthday. I was luckily able to go home on my birthday, but it was still a horrible day. I cry as I write this, for I'm remembering the depression, pain, and anger I felt. I asked myself over and over why it had to be me. I started my first year of high school on time, in a wheelchair, and a brace. My friends seemed happy to see me, but everyone was uncomfortable around me. I felt out of place in a huge new school. Starting high school is very stressful, and even more so when you're handicapped. But I am proud of what I have accomplished.

    The lonely days and nights full of pain are over. I am amazed I survived. So many times I held a knife to my wrists and almost ended it all. The reason I'm writing this is to tell others there is hope. That summer taught me more than a simple teenage summer would have. I've established a closer bond with my parents, and I've realized who my true friends are. My life is nearly normal now. I'm even starting to bend over more and more every day. I never thought I could do that again. Every day I experience little blessings. Last night when I babysat I thought how lucky I am when the little boy wrapped his arms around me and told me he loved me and I was the "bestest baby sitter ever." I think of all I would have missed had I given in to the demons surrounding me.

    I'm going to turn 16 and get my driver's licence I have my life back. And I'm thankful. So for anyone facing what I've been through, know that there is hope. You can make it. Don't give up.

By Hadley, Spring 2000

Do you have a scoliosis story to share?

2011-01-19T00:44:00.000-04:00

Send me your story, whether it's long or short, or whether you think it's positive or not. Something you have to say could be just what someone out there is waiting to hear! Plus that just sharing could be a good feeling and helpful for you too.

Maintaining this site and interacting with everyone who contacts me through the internet has been a wonderful experience! So please do, just go ahead and send me your story. It can be in English or in French. I'll post your photo as well if you send it to me. Looking forward to hearing from you :-)

Email your story to deeviated@gmail.com

Scoliosis Links

2011-01-19T00:11:00.000-04:00

Johns Hopkins Department of Orthopaedic Surgery
This is where I had my 3rd and last surgery in Feb. 1997.
Support4Scoliosis
Great site for persons, their friends or familes living in the UK who have been diagnosed with Scoliosis.
Standing Upright - Support Network for Scoliosis Sufferers
One of the most inspiring scoliosis sites. This certainly gets my 'seal of approval'!
The Internet Scoliosis Club
This club offers a support group, advice and understanding to eveyone who has scoliosis, or who knows somebody with scoliosis. There is also a mailing list you can join.
Straighten Up! Scoliosis Can Be Treated
page at KidsHealth.org, has xrays of before and after, and one teen's story.
Scoliosisrx: Scoliosis Treatment
illustrated discussion by Dr. Blackman from the Children's Hospital in Oakland, CA.
Scoliosis Research Society
SRS website, has alot of information, pictures, a glossary, this is s a very good site
Scoliosis Support Group of Queensland
homepage of this Australian support group
Scoliosis Alternative Treatments

One person's account of going through scoliosis surgery - Victoria's Story

2011-01-12T00:06:00.000-04:00

My Personal Tips & Advice For Living With Scoliosis

2011-01-11T23:51:00.000-04:00

Your body is not who you are. The shape of your body is no reflection on you inner self, your true self. You are not defined by your physical body, by the 'husk' that is our vehicle during this life.

Beauty is not defined by what you look like. If you are happy inside, and positive, this will shine through and you will see beauty when you look at yourself in the mirror, no matter how crooked your spine is. Other people around you will see that beauty shining through you as well, regardless of your physical body's shape.

If you or or your children shows any signs of scoliosis, seek a doctor's opinion as soon as possible. If it is necessary, a brace or surgery could be required as 'treatment'. Seek out at least one 2nd opinion before making any decisions, and that means from another doctor or specialist.

If you do require surgery, do not panic. It is not the end of the world, and you can get through it! Think of it as a personal challenge to overcome, set goals for yourself to achieve. If you view it in a negative way, as only being something scary and to avoid, then you'll likely have a bad experience. If you go in strong, healthy, and with a smile on your face, then you will succeed. It's amazing how far one can go on a smile.

If you are a Jehovah's Witness and you or your child requires surgery, then have the surgery. Scoliosis won't go away and in some cases, it can progress to a level where, if untreated, one would be crippled, have heart and respiratory problems, and may end up in a wheelchair. It is not something that can be wished away, or simply 'let go'. On the same thought, if you are considering COPES treatment, be careful! In many cases, the curving is severe and surgery is required, there is no way around it. And stay away from chiropractors unless you have been to a specialist and all options are explored, and the specialist will inform you what you can and cannot do with a chiropractor or massage therapist.

If you are depressed because you are crooked, and it is hard to dress, pick out clothes, wear a tshirt, etc. you have to realise that it's your shape, and you gotta accept it. Usually, it doesn't bother anyone else nearly as much as it does you! No one else likely notices. Try it sometime--it is hard at first, but then you will feel much better about yourself.

Wear a t-shirt, one that you claim you 'can't be seen in', and wear it out in public. No jacket allowed!

When people smile at you or maybe comment that they can't put their finger on it, but something about you is different-you look nicer today, they ask if you got a haircut--well you'll see, people will notice that you are more casual, more relaxed-looking, and the more often you try this, the easier it gets and the more
compliments you get. Try wearing a dress one day, or go swimming at the beach!

These are small goals you can set for yourself. And that brings me to the final tip: don't let your scoliosis control you!

It's like I said above, if you are wearing layers in the summer, or hiding behind jackets no matter what, or avoiding social events or the beach because you are afraid someone will see your back...then you are giving control of your life to your back--no, to your FEAR. Don't stop living because of scoliosis. For your own sake, live life for once. Accept your back, and don't let it ruin your life. It's not worth it. There are many worse things you could be suffering from, lots of worse situations you could be in, so be grateful for what you
have and live your life, don't hide at home or under layers of fear and extra jackets.

2011-01-09T00:58:00.000-04:00

Hello visitor, and welcome to my Scoliosis blog.

This is my story, from the first diagnosis onwards. I hope this blog will also be a source of hope and of knowledge for others dealing with this spinal disease.

I've lived with Scoliosis since the age of 12, and for the longest time I was unable to write about it. This is going to be a challenge for me, sharing my story like this, but I do it it in the sincere hope that it will help someone else out there who is living with Scoliosis.
Know that you are not alone!

Submit your story or comments to deeviated@gmail.com