Wishing for normalcy

Update

2014-11-24T13:18:00.004-05:00

I've not updated this blog in a while, and that's a good thing. Thankfully I have learned to (mostly) pay more attention to what my body is saying. That doesn't mean I'm not in pain, just that I have learned to lessen the flare ups that are under my control. I can't control the weather, but I can sometimes get a better handle on the sleep and stress end of my triggers. I have been going to PT with a Feldenkrais practitioner and have found it extremely helpful as well. I highly recommend checking it out for body work . My mantra is, well one of them, "one day at a time". And also the spoon theory is great to keep in mind. When I first read it, it was like someone had been in my brain and verbalised what I couldn't. If you're not familiar, this link describes it well: Wishing you all painless and happy times.

Never, ever, ever do I have a dull moment

2010-08-02T21:55:00.003-04:00

Ha! Why should I be stuck with only strep throat? It's me - nothing is ever normal! So fever and throat kept getting worse. Went back to dr's on Friday (and had to cancel my trip to VA for the wkend which sucked) and it turned out that in addition to strep, I developed infections on my tonsils. So after blood tests and more of the dr feeling how large my glands had swollen, she switched me to Biaxin. She also mentioned that if I got worse over the weekend I'd have to go to casualty to make sure I didn't have an abscess. Now the problem here is she mentioned the A word. It's illegal to mention the A word near me, b/c somehow my body gets ideas from it.
Well, thankfully my throat improved over the weekend, but why leave things like that? If something is getting better, then something else needs to get worse, right? Well that's my body's inane logic. So of course the bum started to hurt. I tried to ignore it, figured it was b/c I was spending a lot of time on the couch, blah blah blah. It's easy to try to rationalise these things away. Of course it never works.
So today I went back to my dr so she could check out my throat - happy it was improving but definitely not 100% yet. I'm not greedy, I'll take what I can get. Since I was there, and missed a lot of work last week (though to be fair I went in everyday except Tuesday, even burning with fever, because the office was moving and I had to sort it out) I asked her to just take a glance at my bottom and see if I was hallucinating. It's happened occasionally...
No such luck this time, she suggested I head downstairs to my CRS to see if he could take a look at me. It's so nice having most of my dr's in the same building, really saves on commuting times/costs! So I went downstairs where they know me oh so well. The receptionist was like - do you have an appt? I told her the situation and she said to have a seat. I thought I'd just make an appt, but she conferred with some people and then they spoke to Dr. A and what can I say, I've just got that special affect that he wanted to see me then and there. He probably thought I was imagining it again and just get rid of me. Well I shouldn't say that, he's actually quite sensitive to my plight and I believe would really love to suss out why I keep getting these, well, you know the word. So he came in, I told him, he took one look at me and was like, yep you've got an -------. So it didn't develop in my throat, but lucky me still got one on the other end! He wanted to do surgery tmrw morning but I told him I'd missed so much work last week. We agreed to Thursday, and he conferred w/ my dr about drugs in the meantime, so now I'm on Biaxin AND Flagyl. So I can't even drink myself silly about this blasted situation! I'm hoping I hold out until Thursday as I really want to miss the least amount of work possible. Fingers crossed!!!
Oh - and my blasted neck is still killing me! ARGH!!!

icky sicky me

2010-07-28T21:35:00.002-04:00

My body devised a completely brilliant plan to stop the neck/shoulder from hurting so much - I got strep throat! I haven't had it in so long and completely forgot what a joy it is - NOT! Monday I had a sore throat, Tuesday stayed home and fever went up and throat got worse, Wednesday went to dr's and they did a rapid strep test. At least I'm on antibiotics now. Should have gone yesterday but I get sore throats a lot and most of the time they're just from acid reflux or post nasal drip. But today I knew I had something super special since my fever has gone up from 98.9 on Monday, then 100.4 last night and then 101.1 today. For most people this doesn't seem like a high fever, but my normal temp is about 97.8ish - so if I get anything above 98.6 I know I'm sick. And fever knock me out. I am praying these drugs kick in soon and I can hopefully get a night of sleep. This feeling cold and hot at the same time and my head pounding and my throat on fire is just not something I am enjoying. But it does make a change from the neck! That still hurts but I can't tell if it's not as bad b/c it's improving from the injections or I'm in so much pain elsewhere my brain can't register it all.

so not better

2010-07-22T17:55:00.003-04:00

Neck pain is just horrid and not improving. This is not fun. I keep going to the gym every other day - sheer torture - but feel slightly better for a slim amount of time after. I walked a lot today at lunch as well hoping to relax the muscles. The needles just really pissed them off and they're not getting happier at all. I'm praying this improves by the 30th at the latest as I'm away that weekend and it will just not be fun feeling like this.
But still, the weather was lovely today and now I'm off to meet a friend for some vino. That should help a bit :)

OMFG!

2010-07-20T16:03:00.000-04:00

This pain is incredible. I can't even find words to describe how much pain I am in. I have to get through two more hours of work, sitting here with ice on my neck and praying for the massive pain to subside.
If I ever want to do this again, please someome stop me! I just hope the relief is fast to happen and gets rid of this pain. I am so much worse than I was before the injections. My muscles are so angry it's not funny.

More poison

2010-07-19T08:46:00.003-04:00

Last Wednesday we did another round of Botox injections. On an (high) average I'd say I got about 30-40% improvement during the middle bit. The first two weeks were horrid and after a few weeks I started to get bad again.
I've also discovered that I do much better when I'm not sitting in front of a desk all day. Anyone hiring tour guides for England? I felt pretty good when I was over there moving around a lot more during the day. Granted I was extremely blessed with optimal weather a well.
Anyway the Botox. We did three vials instead of two this time, seven injections total into different areas in my neck an shoulder. After I felt like I still had the needles in me for hours. The injections are pretty deep at least they feel it. They also anger my muscles and I've been getting progressively worse since Wednesday.
Last night was the worst so far. Complete meltdown with the pain. I kept trying to do all normal things as if I wasn't in tons of pain this weekend so perhaps that didn't help. I did go to the gym on Friday and actually felt a litle better after though it didn't last very long. I tried heat and ice yesterday bit I don't know if they helped or hindered. I also used the massage chair when I was getting a pedicure. It was mostly on my lower back and it felt good. No idea if that helped or hindered or had no effect at all.
At present on my way to work with the intention of going to the gym at lunch. Even if it is only for a bit I have to try.
Going to try to keep a better record this time because I didn't last time and it was hard to recall things months later.
Also my right hand where my last surgery was has been inflamed the last few days. Perhaps it's all connected. If only my right side felt like the left side of my body. It's so strange how one half dying in pain and the other barely so.

brief

2010-05-17T22:05:00.003-04:00

no energy to go into it but after last week seeing my phyiatrist and getting another exam i am in even more pain than i was - plus i now have lower back pain shooting down to my right foot killing me - couldn't stand on my leg on sat.
so not in a happy place right now.

More testing

2010-04-20T09:32:00.004-04:00

With the technology today you would think that they could make these 24 hour heart monitors less obvious and obtrusive. No such luck.
We are testing the heart now to make sure that's not the cause of all this neck and shoulder pain. Still desperate to get rid of the pain and still a perpetual guinea pig.
Oh it's fun to be me!
At least this one isn't painful, just inconvenient.

2010-03-28T22:27:00.003-04:00

Having a rough time of it and came across this site. Seemed to have some good advice even though I know it good to refresh.
http://www.overcomingpain.com/10steps.html

More catching up...

2010-03-16T16:41:00.003-04:00

Maybe separating it by body part will be easiest:

1)Neck was still a wreck so continued through beginning of January. I felt we weren’t getting anywhere and well, obviously my PT agreed, because she broke up with me. We both thought I needed to see another doctor. I was at my wits end and wasn’t sure which direction to go in seeing as though I’ve been to every kind of doctor I can think of. I got the name of a spine surgeon – Dr. Michael Neuwirth - from my hand dr. I made an appointment to see him after my hand surgery (see below). He said that he wanted to do the following: a 2 level anterior cervical discectomy and osteophytectomy with a 2 level anterior cervical fusion using structural allograft and an anterior cervical plate . I think I walked around in shock that day. Not only did this sound huge, the doctor didn’t take my insurance and at the time Beth Israel still wasn’t out of negotiations w/ UHC. After flipping out for a couple of days and emailing the dr with my million and one questions – I started to think more sensibly. I realised I needed more opinions. My friends that are chiros were already dead set against it. Can’t really blame them. I made an appointment with my physiatrist, and continued to research. What I found were reports that once your spine is fused, it puts more pressure on the adjacent joints and they begin to degenerate. That was the last thing I need because my spine is already degenerating faster than most people my age. I saw Dr. Panagos about a week later and told him what was going on – still the pain was horrific and I have no life other than work and the couch. He felt the surgery was pretty heavy duty as well and not necessarily the best idea. He’s seen patients have that type of surgery and not any relief. He was v. nice and you could tell he really cares about his patients, and empathises with the length of time I’ve had to deal with the medical and insurance companies spinning me around and around. Something really needs to be done to sort out the medical industry in this country. I should know! He gave me another exam and said there were a couple of injections into the muscles he was thinking about. I think his feeling was that the muscles might be causing more pain than the spine. Heck I’ll try anything that is not the surgery at this point. The first idea was Botox – yes I was shocked. Supposedly it can release the muscle and help with the nerves and calm the area down. I don’t know the technical aspects but that was the gist. It is v. expensive and he wasn’t sure we’d get approval from UHC. Miracle of miracles we did. It had to be ordered from a special pharmacy and sent overnight as it has to be kept refrigerated. I had the injection almost two weeks ago. Dr. P said it would take about two weeks to work, and he didn’t do too much as he didn’t want me to get too lax, and said we could “top it off” if need be. Well, so far I’m not seeing much improvement. Two weeks will be in two days, and I’m meant to ring him and let him know what is going on. The first weekend I was a little sore but felt ok. Then last week most of the week I was in a lot of pain from the injections. I had 8 into various muscles on my right side. I was a bit better this weekend – even cleaned my kitchen b/f the neck flipped out - and then once I got to work and sat all day at the computer I was a wreck again. I changed the setting on my chair to make sure I am sitting more upright to see if that helps as well. It’s not easy though, the chair keeps changing back itself! Anyway, the neck is not happy right now. Did go to the gym at lunch – been trying to give the legs a bit of exercise a couple of times a week since I can’t really do too much with the rest. So, still trying to be positive and hope it miraculously kicks in any minute. Fingers crossed.

2)Hand surgery #5! Wow – who ever thought I’d be saying that? This was minor COMPARED to all of my other hand surgeries. Thankfully!!! It was for Dequervain's tendonitis Dr. Melone did my surgery, like I would let anyone else touch my hands, and it went pretty well. I wasn’t very nervous – think I was in shock that I had to have another hand surgery – or medical procedure – again. I swear it is non-stop. Surgery was 21 January at Beth Israel Hospital. Of course they were in the middle of a dispute with UHC (they’ve finally resolved but I read somewhere it would only be retroactive to 1 March, which doesn’t help me – so not happy at all as I owe over $2000 to the hospital – at least the dr’s were covered though) and I just couldn’t put this off anymore. I’d been waiting for a long time and my patience had run out. Two years was just too long to be sleeping with a splint. I requested the first surgery as it is one of the most important things to do. Seriously, you can’t eat, you’ve not slept the night before, so it motivates you to get it over with as soon as possible. That and since I have been on e of those patients that made everyone else’s surgeries get delayed, I know better. So at the hospital at 6am! Of course they don’t tell you the doctors don’t show up until 8.30! Beth Israel has quite a system. They gather a group together in the waiting room, then bring you back to changing areas. They say you can see the person you came with after you change. Just so you know, they don’t . I had to beg to let my mother come up before my surgery as there was no way I was going in w/o seeing her and I knew she was freaking out as well since she thought that we could see each other later too. This is what we were told. Beware of liars…I get changed, then they take you one by one to ask a couple of questions. After that they take the group of you up in a lift to the floor above, and walk you to the pre-op/post-op room. After waiting for a while, timing depends on where you are seated, the nurses seem to start at the far end and work their way down, a nurse finally came to ask me a million questions and do blood pressure, pregnancy tests, etc. I asked her if my mother could come up and gave her a whole spiel about how I have had so many surgeries and my mother and I have a “thing” and I need to see her b/c I won’t go into the OR w/o seeing her. I was nice and she was like ok, then fobbed it off on another nurse. The other nurse was v. busy, thing she was the head nurse, and forgot, so I gently reminded her and then she did it right away and someone sent up my mother. She was so relieved, as was I. Of course it is also nice to have company when you still have another hour or so to wait for the doctor. The anesthesiologist came by and we went over everything, Dr. Patel was his name. He was v. nice and good sense of humour. Nothing worse than a doctor w/o a personality! So we’re waiting and waiting and then at about 8.20 my tummy felt wonky so just to play it safe I went to the loo. Of course this was when Dr. Melone comes in, so my mother told him where I was and he walks down and even though I’m still in the loo – being perfectly fine –have the craziest tummy – he’s outside calling my name. I came out and was like – hello – I had to use the toilet! But all in good fun, we get on v. well. He was saying he couldn’t believe it’s our no. 5 and how long we’ve been doing this – for 18 years! The intern/resident dr was all shocked like how can you be so casual w/ him? I think they’re all scared of his reputation but I’ve never been intimidated – heck it’s my body – I’m going to deal with the doctor as I please. Besides, he is a v. funny guy when you get to know him. Unfortunately he still supports Georgetown basketball – his greatest flaw. I went to SU so we argue about Bball.Dr. M signs off on my arm and I get wheeled into the OR. I was actually looking forward to this b/c my neck had been killing me and I had not slept in forever, so sedation sounded like a gift from G-d! They did a local on my hand and wrist, about 3 or 4 injections, and you are awake because they want to make sure the area is numbed up. Afterwards they knock you out – the best part! Afterwards they bring you back to the same room you started out it – and I was so tired but relaxed. My neck didn’t hurt for a whole hour, so I didn’t want to get out of the bed. I kept asking for more pain meds and not to be moved as I was afraid my neck would start to hurt again. I have to say everyone was most accommodating. They let my mother come up for a couple of minutes to see me then sent her away until I was able to move to the chair area where they have some snacks and drinks to eat. All in all nothing like the other hand ops – a lot less painful for sure. I had to wear a splint for about 11 days, then they took that off and the stitches out, gave me some exercises to do and sent me home. Wrist is still a bit sore and swollen, and they didn’t warn me that my thumb would be numb-ish for a while, but all in all it’s good.

3)I had to have another abscess drained the week of Christmas. Again, no idea what caused it. Then this week that area started hurting again. Seriously, I really would think I’m a hypochondriac if it was not proved that there is something wrong when I get to the dr’s office. I went to Dr. A on Friday and he said that – yes, get ready for it – I had another infection but it was a fistula this time. I don’t even know what to say or do anymore. This is ludicrous. There is no proof that I have Crohn’s – even the dr’s say that – but yet I keep getting these infections. He put me on both Flagyl and Cipro for a week (in the middle of the week at present) and going back on Thursday at 2pm. Yes, it is a miracle I’m not in a mental institution yet. Plus you can’t drink on Flagyl so tmrw will be the first St. Patrick’s day I’m sober since university. Well, I need to do my laundry anyway…

2010-02-26T15:52:00.002-05:00

Well it's been a very long time since I've updated and with good reason. Well, I had a good reason because bad things were going on. I am definitely a medical conundrum. I will try to do a brief summation to catch up.

4 September 2009 - Started PT at HSS this time. The other place had gone to didn't do much so thought I'd give the big guys a shot. I had a wonderful therapist who was knowledgeable about my multiple problems and willing to work and adjust things depending on how I felt. It makes it so much easier when you have someone like that to work with. I
started going once a week up until my trip to Italy on 2 October.

11 September 2009 – Had cervical epidural no. 3. This time I unfortunately had a spinal fluid leak that gave me one murderous headache. It's incredible how much pain some spinal fluid can give a person! Thankfully it was done on a Friday so I had the weekend to recover. This epidural didn't do much either. I suppose overall I improved maybe 10% if I had to quantify it, but that was after three epidurals three months in a row. Hardly worth going through that again for such minimal pain relief.

2 October 2009 - Off to Italy, a bit weary but being optimistic. Took both my cameras - ended up being too optimistic as carrying one was all I could handle. A bit depressing not getting to use my Hasselblad. From 3-7 October I was in the Cinque Terre. I had planned this trip before my neck had become such a nightmare, and was worried I wouldn't be able to do the hiking around the CT, which was the main reason I wanted to go. I've been wanting to do this for so many years and the way my body is falling apart, I figured the sooner the better. The trails were very steep and narrow and since I'm afraid of heights it was a huge challenge, but I am so happy I did it. For the most part my hips held up and I iced every night to get my neck to stop hurting. I think the movement actually was good for my neck in the long run. I was still in pain - maybe it was just the endorphins from so much activity. 7-13 October I was in Firenze and did a lot of walking around, even climbed the 400+ steps to the top of the Duomo. It was a personal challenge I had set myself and couldn't believe I made it. Won't be doing it again – but was SO worth it! 13-18 was Venice. It started off good, a lot of walking but nice and flat, and then on the evening of the 15th I became violently ill with some sort of tummy bug. I couldn't even keep a sip of water in me for over 24 hours. I spent all day on the 16th in bed/in the loo and could barely sit up or lay down unless I was curled up on my right side. Saturday I was determined to not waste my last day in Italy in bed so made it to a chemists and he gave me immodium, which I promptly took. It's the only thing that got me home in one piece, and I mistook it for getting better. Worse off for me. I was ok on the flight, thankfully, and then went to work on Monday am. I was still running to the loo regularly and by noon was so sick to my stomach everyone made me go home. I woke up on Tuesday, the 20th and there was no way I was going to work. I made an appointment with my dr which unfortunately wasn't until the afternoon. I barely made it there, and spend most of the time waiting for her in the loo. She made me do blood tests and wouldn't let me leave until they came back. She then set up an appointment with a gastro for the next day to have an endoscopy. She also gave me a script for an antibiotic. I left the office, made it downstairs and out the door, then ran back in to use the loo again. Made it to the chemists, and barely had time to get home before I had to go again. I spent the next hour or so running back and forth and then scary time! I saw blood. That freaked me out. I rang my dr, at this point her office was on the service, left a msg and she promptly rang me back and said to get to the hospital. Thankfully a v. good friend came over to take me as the dr felt I probably shouldn't attempt to go by myself, not having eaten or drank anything and being dehydrated and about to pass out.
20 October 2009 – The joys of the ER begin. Thankfully I didn't have to wait too long in the waiting room with all the icky sick people (yes I know I was one of them but still…) This was a trick though, because once I got into the ER, they kept me there for 24 HOURS as there were no beds available. It seems my dr had thoughtfully called everyone she knew at the hospital and I was now a celebrity of sorts, which is all good when you feel like you're about to die. The worst part of the ER was not having my own loo – since that was where I was spending most of my time. Even the IV fluids were going right through me. My parents came in from the island and waited with me until after I had a CT scan around midnight. This finally revealed that I had one hell of an angry gut. The gastro guy, Dr. Chun (he was quite a laugh) came by and said that I needed to have a colonoscopy but not till Thursday as they wanted to give my body a chance to calm down. The funniest thing he said was that they were going to give me the prep on Wednesday night. I couldn't stop laughing. I said there was no way I was taking anything that was going to make me go to the bathroom more than I was, it wasn't humanly possible to go more than I was. So he made me promise to not eat or drink anything. Like I even wanted to – the nausea was so bad that they kept giving me anti-nausea meds with my IV. After 24 hours, the last few of which I had to listen to one of the most annoying human beings on the planet complain that he didn't want to be in the ER – even though his dr had sent him there directly to have a defribulator put it as quickly as possible – and still he wouldn't leave, only kept threatening to. Now as a side bar do not ever ever ever go to Lenox Hill ER under any circumstance. By the time I was finally moved to a room, they had two beds to where one was meant to be and I was literally blocked in on each side. Every time I had to get up to go to the loo (about every 10 mins) I had to climb to the foot of the bed, with my IV bag, and try to find an empty and relatively clean loo.
So finally around 7pm on Wednesday I am told there is a room for me. YAY! I get wheeled up to some floor, and the room hasn't been cleaned, so they leave me in the hall. Ironically in front of a copy of a Monet painting of VENICE! Seriously, I couldn't make this up! Finally housekeeping comes to clean the room and I have to listen to the woman complain about her job – all the time trying to be patient but REALLY needing the bathroom. Turned out my roommate couldn't get out of bed which was a blessing for me since I couldn't get out of the loo.
Thursday morning I get woken up at the crack of dawn and taken down to have that colonoscopy. I barely recall any of this b/c I was so weak at this point and then with the drugs they gave me I was delusional for the rest of the day. Random doctors kept showing up to see me and I couldn't tell you what they said. In the end it turned out I had a very bad case of colitis. Of course the doctors couldn't decide if this was just from an infection I caught (my vote) or that I now had IBD (inflammatory bowel disease). It is surprising how dr's really want it to be the more serious, long term thing. I kept telling them that I had a perfectly normal colonoscopy over the summer and that I did not randomly develop IBD out of nowhere, but they think they know everything. Which they don't. But they don't like it when you tell them that. Unfortunately for their egos I tell them regularly.
So Thursday night I try to eat a little something, drink some water, take it easy. They are pumping me up on antibiotics and IV fluids and I'm still going to the loo, but maybe only 3x an hour now. Hey it's progress. Thursday pm/Friday am this daft intern comes in to draw blood. I haven't mentioned how much blood they took from me this whole time, as well as they had to keep moving the IV from one vein to another. Human pin cusion at your service. So this intern can't get a vein. He tries a second time. No luck. He has no clue. I tell him he gets one more try and that's it. He thought I was kidding. I said NO, I'm not kidding, I'm not here for you to practice your ineptitude in drawing blood. He didn't get it the third time – no surprise there – and I kicked him out. He sent in his resident a couple of hours later. I told her straight out that if she didn't get it the first time, that was it. The only people that are good at getting my blood are the phlebologists. My veins like to hide and move. I warn everyone that unless they're good, don't bother. But these mini wanna be "dr's" have egos way too big for them, so she tried…and failed. She truly thought I was going to let her try again. If there is one thing I've learned over the years it is this, dr's don't really care about you. They only care about themselves. I no longer have any problem telling ANY dr what they can or can't do – no matter who they are. So she said something about waiting until the phlebologist do the draw in the am. DUH! By Friday I was still icky but I guess blood tests were a bit better - the people who know how to draw the blood took it without a problem – and the dr's are saying that I could probably go home on Saturday. By Friday afternoon I couldn't take it anymore and just wanted to go home so I lied and said I felt a lot better, forced myself to eat a banana – which made my gut swell up to some crazy size that I could barely close my trousers – but it worked. I got home Friday night! My parents stayed with me until Sunday night which was v. helpful as I was still weak and not great.
I had to go see the gastro dr on the 28th and even though I had had a bad reaction a million years ago to flagyl he felt that was the best medicine for this so he put me on it 4x a day. It had some of the worst side affects – metallic taste in mouth was one of them, headaches, oh and you can't drink any alcohol at all. Not that I was even contemplating that, but supposedly if you do you can get violently ill from the combination. Beware. After being on the meds for week I was told to stop them. Unfortunately whatever was making my gut angry was still around and within three days I was violently ill again – running to the loo, couldn't keep water in me even. Had to ring the gastro over the weekend as I even developed a fever. He put me on the meds again. During the time from the hospital to now I had been doing stool samples and blood tests constantly. It was getting boring already. Oh and more colonoscopies. Fun Fun Fun! The gastro couldn't decide for sure if I had IBD (even though I swore I didn't he just wouldn't take my word for it) or an infection, but since I was responding to the flagyl he decided to try something new and I had to wean myself off of it for two weeks. We started 4x a day for 5 days, then 3x a day for 3 days, then 2x a day for 3 days and then 1x a day for 4 days. Thankfully when I stopped I didn't get crazy sick again, but I have to say my gut, 3 months later, still isn't what it was. But at least it isn't like it was in October!

another day, same problem

2009-09-09T20:48:00.004-04:00

The first couple of weeks after the last (2nd) injection worked for about 2 weeks. The last couple, especially the last week, I've been in agony. I feel like I'm back at square one. Started PT on Friday and went okay. Went again yesterday and woke up feeling like someone was crushing my spinal cord. Joy. I spoke to the dr's office yesterday after lots of back and forth it was decided that I would be squeezed in this Friday. I had told them anytime before I leave for Italy in October, and first they said they couldn't do it until October. I quickly told them that the dr had PROMISED that if I needed another one he'd squeeze me in before my trip. And to be fair Dr. Ahmed kept to his promise. G-d willing the third time is a charm. Fingers crossed, et al.
Btw, was so bad a week ago Tuesday I took a pain killer (Ultracet) at 10.30, with food. After I ate lunch I started to get nauseous around 14.30 and was still feeling ill at 20.30. It did NOTHING for the pain and all I felt was sick for 10 hours! If anything at least it proved to the annoying resident at the dr's that the drugs didn't work and they are NOT a solution to ending my pain. I wouldn't want to take them every day anyway.

2009-09-02T11:29:00.002-04:00

Cervical spondylosis

Definition
Cervical spondylosis refers to common age-related changes in the area of the spine at the back of the neck. With age, the vertebrae (the component bones of the spine) gradually form bone spurs, and their shock-absorbing disks slowly shrink. These changes can alter the alignment and stability of the spine. They may go unnoticed, or they may produce problems related to pressure on the spine and associated nerves and blood vessels. This pressure can cause weakness, numbness, and pain in various areas of the body. In severe cases, walking and other activities may be compromised.
Description
As it runs from the brain down the back, the spinal cord is protected by ringlike bones, called vertebrae, stacked one upon the other. The vertebrae are not in direct contact with one another, however. The intervening spaces are filled with structures called disks. The disks are made up of a tough, fibrous outer tissue with an inner core of elastic or gel-like tissue.
One of the most important functions of disks is protecting the vertebrae and the nerves and blood vessels between the vertebrae. The disks also lend flexibility to the spinal cord, facilitating movements such as turning the head or bending the neck. As people age, disks gradually become tougher and more unyielding. Disks also shrink with age, which reduces the amount of padding between the vertebrae.
As the amount of padding shrinks, the spine loses stability. The vertebrae react by constructing osteophytes, commonly known as bone spurs. There are seven vertebrae in the neck; development of osteophytes on these bones is sometimes called cervical osteoarthritis. Osteophytes may help to stabilize the degenerating backbone and help protect the spinal cord.
By age 50, 25-50% of people develop cervical spondylosis; by 75 years of age, it is seen in at least 70% of people. Although shrunken vertebral disks, osteophyte growth, and other changes in their cervical spine may exist, many of these people never develop significant problems.
However, about 50% of people over age 50 experience neck pain and stiffness due to cervical spondylosis. Of these people, 25-40% have at least one episode of cervical radiculopathy, a condition that arises when osteophytes compress nerves between the vertebrae. Another potential problem occurs if osteophytes, degenerating disks, or shifting vertebrae narrow the spinal canal. This pressure compresses the spinal cord and its blood vessels, causing cervical spondylitic myelopathy, a disorder in which large segments of the spinal cord are damaged. This disorder affects fewer than 5% of people with cervical spondylosis. Symptoms of both cervical spondylitic myelopathy and cervical radiculopathy may be present in some people.
Causes and symptoms
As people age, shrinkage of the vertebral disks prompts the vertebrae to form osteophytes to stabilize the back bone. However, the position and alignment of the disks and vertebrae may shift despite the osteophytes. Symptoms may arise from problems with one or more disks or vertebrae.
Osteophyte formation and other changes do not necessarily lead to symptoms, but after age 50, half of the population experiences occasional neck pain and stiffness. As disks degenerate, the cervical spine becomes less stable, and the neck is more vulnerable to injuries, including muscle and ligament strains. Contact between the edges of the vertebrae can also cause pain. In some people, this pain may be referred--that is, perceived as occurring in the head, shoulders, or chest, rather than the neck. Other symptoms may include vertigo (a type of dizziness) or ringing in the ears.
The neck pain and stiffness can be intermittent, as can symptoms of radiculopathy. Radiculopathy refers to compression on the base, or root, of nerves that lead away from the spinal cord. Normally, these nerves fit comfortably through spaces between the vertebrae. These spaces are called intervertebral foramina. As the osteophytes form, they can impinge on this area and gradually make the fit between the vertebrae too snug.
The poor fit increases the chances that a minor incident, such as overdoing normal activities, may place excess pressure on the nerve root, sometimes referred to as a pinched nerve. Pressure may also accumulate as a direct consequence of osteophyte formation. The pressure on the nerve root causes severe shooting pain in the neck, arms, shoulder, and/or upper back, depending on which nerve roots of the cervical spine are affected. The pain is often aggravated by movement, but in most cases, symptoms resolve within four to six weeks.
Cervical spondylosis can cause cervical spondylitic myelopathy through stenosis- or osteophyte-related pressure on the spinal cord. Spinal stenosis is a narrowing of the spinal canal-- the area through the center of the vertebral column occupied by the spinal cord. Stenosis occurs because of misaligned vertebrae and out-of-place or degenerating disks. The problems created by spondylosis can be exacerbated if a person has a naturally narrow spinal canal. Pressure against the spinal cord can also be created by osteophytes forming on the inner surface of vertebrae and pushing against the spinal cord. Stenosis or osteophytes can compress the spinal cord and its blood vessels, impeding or choking off needed nutrients to the spinal cord cells; in effect, the cells starve to death.
With the death of these cells, the functions that they once performed are impaired. These functions may include conveying sensory information to the brain or transmitting the brain's commands to voluntary muscles. Pain is usually absent, but a person may experience leg numbness and an inability to make the legs move properly. Other symptoms can include clumsiness and weakness in the hands, stiffness and weakness in the legs, and spontaneous twitches in the legs. A person's ability to walk is affected, and a wide-legged, shuffling gait is sometimes adopted to compensate for the lack of sensation in the legs and the accompanying, realistic fear of falling. In very few cases, bladder control becomes a problem.
Diagnosis
Cervical spondylosis is often suspected based on the symptoms and their history. Careful neurological examination can help determine which nerve roots are involved, based on the location of the pain and numbness, and the pattern of weakness and changes in reflex responses. To confirm the suspected diagnosis, and to rule out other possibilities, imaging tests are ordered. The first test is an x ray. X rays reveal the presence of osteophytes, stenosis, constricted space between the vertebrae, and misalignment in the cervical spine--in short, an x ray confirms that a person has cervical spondylosis. To demonstrate that the condition is causing the symptoms, more details are needed. Other imaging tests, such as magnetic resonance imaging (MRI) and computed tomography myelography, help assess effects of cervical spondylosis on associated nerve tissue and blood vessels.
An MRI may be preferred, because it is a noninvasive procedure and does not require injecting a contrast medium as does computed tomography myelography. MRIs also have greater sensitivity for detecting disk problems and spinal cord involvement, and the test allows the physician to create images of a larger area from various angles. However, these images may not show enough detail about the vertebrae themselves. Computed tomography myelography yields a superior image of the bones involved in cervical spondylosis. Added benefits include that it takes less time to perform and tends to be less expensive than an MRI. A good diagnosis may be reached with either a computed tomography myelography or an MRI, but sometimes complementary information from both tests is necessary. Nerve conduction velocity, electromyogram (EMG), and/or somatosensory evoked potential testing may help to confirm which nerve roots are involved.
Treatment
When possible, conservative treatment of symptoms is preferred. Conservative treatment begins with rest--either restricting normal activities to a less strenuous level or bed rest for three to five days. If rest is not adequate to relieve symptoms, a cervical orthosis may be prescribed, such as a soft cervical collar or stiffer neck brace to restrict neck movement and shift some of the head's weight from the neck to the shoulders. Cervical traction may also be suggested, either at home with the advice of a physical therapist or in a health-care setting.
Pain is treated with nonsteroidal anti-inflammatory drugs, such as aspirin or ibuprofen. If these drugs are ineffective, a short-term prescription for corticosteroids or muscle relaxants may be given. For chronic pain, tricyclic antidepressants can be prescribed. Although these drugs were developed to treat depression, they are also effective in treating pain. Once any pain is resolved, exercises to strengthen neck muscle and preserve flexibility are prescribed.
If the pain is severe, a short treatment of epidural corticosteroids may be prescribed with discretion. A corticosteroid such as prednisone can be combined with an anaesthetic and injected with a long needle into the space between the damaged disk and the covering of the nerve and spinal cord. Injection into the cervical epidural space relieves severe pain that is not managed with conventional treatment. Frequent use of this treatment is not medically recommended and is used only if the more conservative therapy is not effective.
If pain is continuous and does not respond to conservative treatment, surgery may be suggested. Surgery is usually not recommended for neck pain, but it may be necessary to address radiculopathy and myelopathy. Surgery is particularly recommended for people who have already developed moderate to severe symptoms of myelopathy, although age or poor health may prohibit that recommendation. The specific details of the surgery depend on the structures involved, but the overall goal is to relieve pressure on the nerve root, spinal cord, or blood vessels and to stabilize the spine.
Alternative treatment
Alternative therapy is not meant to replace conventional medical treatment, but it can be a useful adjunct. Its main roles are to relieve tension, manage pain, and strengthen neck and back muscles. Massage is one way to relieve tension, and yoga provides the additional benefit of strengthening muscles. Chiropractic and acupuncture have been reported to relieve the pain associated with disk problems, although great care needs to be taken to avoid exacerbating them. Practitioners of the Alexander technique or the Feldenkrais method can provide instruction on correct posture and exercise that may help prevent further symptoms. Vitamin and mineral supplementation along with herbal therapies and homeopathy can help build and rebalance the weakened structure.
Prognosis
The gradual progression of cervical spondylosis cannot be stopped; however, it doesn't always cause symptoms. For the individuals who do experience problems, conservative treatment is very effective in managing the symptoms. Nearly all people with neck pain, approximately 75% of persons with radiculopathy, and up to 50% of people with myelopathy find relief through therapy alone. For the remaining people with radiculopathy or myelopathy, surgery may be recommended. Surgery is deemed successful in 70-80% of cases.
Prevention
Since cervical spondylosis is part of the normal aging process, not much can be done to prevent it. It may be possible to ward off some or all of the symptoms by engaging in regular physical exercise and limiting occupational or recreational activities that place pressure on the head, neck, and shoulders. The best exercises for the health of the cervical spine are noncontact activities, such as swimming, walking, or yoga. Once symptoms have already developed, the emphasis is on symptom management rather than prevention.
Key Terms
Alexander technique
A technique developed by Frederick Alexander that focuses on the variations in body posture, muscles, and breathing. Defects in these functions can lead to stress, nervous tension or possible loss of function.
Bone spur
Also called an osteophyte, it is an outgrowth or ridge that forms on a bone.
Cervical
Referring to structures within the neck.
Computed tomography myelography
This medical procedure combines aspects of computed tomography scanning and plain-film myelography. A CT scan is an imaging technique in which cross-sectional x rays of the body are compiled to create a three-dimensional image of the body's internal structures. Myelography involves injecting a water-soluble substance into the area around the spine to make it visible on x rays. In computed tomography myelography or CT myelography, the water-soluble substance is injected, but the imaging is done with a CT scan.
Disk
A ringlike structure that fits between the vertebrae in the spine to protect the bones, nerves, and blood vessels. The outer layer is a tough, fibrous tissue, and the inner core is composed of more elastic tissue.
Feldenkrais method
A therapy based on creating a good self image by correction and improvements of body movements.
Magnetic resonance imaging (MRI)
An imaging technique that uses a large circular magnet and radio waves to generate signals from atoms in the body. These signals are used to construct images of internal structures.
Myelopathy
A disorder in which the tissue of the spinal cord is diseased or damaged.
Orthosis
An external device, such as a splint or a brace, that prevents or assists movement.
Osteophyte
Also referred to as bone spur, it is an outgrowth or ridge that forms on a bone.
Radiculopathy
Sometimes referred to as a pinched nerve, it refers to compression of the nerve root--the part of a nerve between vertebrae. This compression causes pain to be perceived in areas to which the nerve leads.
Spine
A term for the backbone that includes the vertebrae, disks, and spinal cord as a whole.
Stenosis
A condition in which a canal or other passageway in the body is constricted.
Traction
A medical treatment that exerts a pulling or extending force. Used for cervical problems, it relieves pressure on structures between the vertebrae and muscular tension.
Vertebrae
The ringlike component bones of the spine.
For Your Information
Resources
Periodicals
McCormack, Bruce M., and Phillip R. Weinstein. "Cervical Spondylosis: An Update." Western Journal of Medicine 165 (July-August 1996): 43.

3 month anniversary

2009-08-14T22:21:00.004-04:00

How depressing. Today it is 3 months since this literal pain in the neck started. I also had my second epidural today. At the moment I'm in agony but thought I should move around a little before lying down again. Need to ice as that seems to help, it feels very sore. I have had two acupuncture appointments in the last few weeks. The first one seemed to help loosen up my trapezius muscles which was good, so we did another appt 12 days later, and I'm not sure if it was that or the combination of going to 2 Depeche concerts in a row and overdoing the whole week with the work move, etc. but the last two weeks have been v. painful. That and I'm incredibly depressed from gaining almost 5 lbs in four weeks! So NOT good. My muscles are atrophying and I lose my breath so easily, worse than normal.

During the procedure the dr says to tell him if/when you feel anything painful or uncomfortable. Last time I had pins and needles shoot all the way down my right arm when the needle was going in. This time it was so strange, it was my chest and back on the right side, it felt like an electrical shock. Freaked me out completely but thankfully as soon as he moved the needle it stopped. It's not a fun procedure but if it works I will be very happy about having to deal with it!

Anyway Dr. Ahmed said the procedure went well today and the medicine went where he wanted it to go. I know the first few days can be worse after the local wears off, but am hoping they are not too bad and that I will feel much better in a few days. Please, please, please. It's 7 weeks until Italy and I REALLY don't want to be feeling like this, as it will completely limit me as to what I want to do. So fingers, and everything else, is crossed.

Also had a quick scare this week with a possible abscess again. It started hurting a few weeks ago but went away, so I let it go, then this Monday/Tuesdsay I was in a lot of pain. The dr wasn't in until Thursday so I made an appt then, but strangely by Wednesday it felt better. The dr said it did feel a bit "weird" on that side but that he couldn't find anything "surgical" that he needed to do, so I yet again completely perplexed another dr. At least he's v. nice and said, even b/f the exam, that he always wants me to come in if I suspect something, even if it's nothing, b/c he'd rather deal with the beginning of a bad thing than me putting it off. HUGE relief it was nothing though.

Must go ice and lay down again, in mucho pain.

No changes

2009-07-30T12:16:00.002-04:00

The good news is I had an MRI last Saturday and it showed nothing. No rotator cuff tear (I knew that but everyone kept jumping to that), no bursitis (surprising since everyone's told me I've had that for ages). All good, and I am definitely relieved b/c if it was a tear then I'd have to contemplate shoulder surgery and who has the time (or energy) for that? I've already decided to push back my hand surgery till the new year so I will have a full FSA account and days off.

But the question still remains, what the F*** is going on w/ my neck??? I see Dr. Ahmed (the anesthesiologist/pain dr) on the 6th. The other drs think he will want to do another epidural. Fun stuff! But if it works then it's fine because the pain has actually been really bad this week, especially in my shoulder and upper arm. I am praying that it will work this time because tomorrow is 10 weeks and I'm seriously going to lose my mind, or what's left of it!

9 weeks and still (sadly) counting

2009-07-24T10:23:00.004-04:00

Well I just don't know what to do anymore. I'm at a complete loss. Did the epidural injection work? It might have helped a little with the inflammation in the nerve in my spine, but I still have pain in my shoulder and down my arm, as well as pins and needles. My trapezius muscles are v. v. tight. I asked Dr. P what to do and he said I could try at home traction (don't have one), muscle relaxers, or dry needling. So I tried the muscle relaxers. Of course the next day when he got back to me he said which ones to try, and the one I used was left over from my hip surgery. All it did was give me restless leg syndrome and I was up all night from it, dry as a bone, eyes hurting from being so dry and dehydrated. Must remember to toss out any remaining pills. It was something w/ at T. Anyway then I rang my acupuncturist. He said that he could try some treatment that wouldn't increase the inflammation. I went last night, and felt a little better after, even though the needles hurt like hell - surprising because they don't really normally hurt. But today my neck /spine hurts and the shoulder hurts and the pins and needles are still the same. I'm am going to lose what is left of my mind. Mark did notice last night that my right side seemed weaker - I told him I'm not surprised b/c I've been guarding it and using my left side - which explained why when he touched my left trapezius muscle I screamed - it's been working overtime. Thank goodness it is Friday and I don't have to sit for two days at a computer. I am getting very worried though because time is running out to sort this before October and Italy. There is no way I'll survive that trip like this. Something must be done! Two weeks until I see the anesthesiologist again, perhaps I should see if I can get an appointment sooner. He might have to do another epidural. I also definitely need an MRI of my shoulder, so wondering if I should have that arranged because perhaps this is coming from there as well and a shot in there would be good? I don't mean the one Dr. P. did a month ago, I mean like they did with my hip where they really get into the joint. I have to ask someone and hopefully get some information because I am so worn out I could just give up at this point - and I'm sadly not even trying to be dramatic.

Beyond frustration

2009-07-17T10:42:00.003-04:00

The injection so far hasn't seemed to do much of anything to my body. Last night I thought perhaps I had less pain in my neck, but that is probably because my shoulder was killing me it was taking all the attention away. This morning I have pain in my neck and also stabbing pain in my shoulder. I never heard back again from Dr. P about what to do w/ exercising at home so I've not done anything as when I was in PT they told me to not do anything if I was in pain. I am so confused. Granted I've heard it could take another week or so for the injection to kick in but yes, I'm slightly impatient. (At this point I have a right to be, it's been 8 weeks of this crap!) The pain in my neck does seem a bit higher today though and not in the joint where they injected it. I'm losing my mind. Part of me thinks I should call Dr. Kelly up and have him check out my shoulder, perhaps it is surgical after all, but then again, there's nothing I could do until after October because of my trip. I go back to see Dr. Ahmed on the 6th August, perhaps he'll have some ideas then. My head is spinning, as was the rest of my insides this morning when I had a massive blood pressure drop from out of nowhere. I hate when that happens. Feeling a bit better now but just want to rest, not be sitting in the office uncomfortably.
Ok, I am done with the whinging for now. I just want my life back!

Post - injection

2009-07-14T15:18:00.002-04:00

Thankfully it all was worked out. Friday am I received another call from Dr. Wu's office saying I needed another blood test. I rang back and explained the procedure was set up for Tuesday and that unless the results would be back by Monday I wasn't going to have it. The assistant said to ring the dr at his Queens office. What a backwards place that is! I tried ringing and either got a busy or fax sound. I rang the assistant back to make sure it was the wrong number and told him and he said that you have to let the fax go on and when someone is there and the realise it's not a fax they will answer. Quite frustrating. So I finally gave up with that concept and sent a fax in big black marker asking the dr to ring me ASAP - which was about an hour or so later. He said there was one more test, but I probably was ok b/c of previous results, but to be sure I needed this one. I said all the other dr's said the test results were fine and he said most likely but he couldn't definitively say. By this time I had received a call from Dr. Ahmed's office saying someone cancelled for Monday am and I could have that slot. I asked Dr. Wu when the results would be back and he said Tuesday so I said no thanks, I'm just going to go have the test done. Truly there is only so much you can put up with. Just like I'm not going to have an X-ray taken to see if my neck is lax when we know it is already. No wonder the health system is such crap in this country. They overdo tests when you don't need them and the people that do don't get them! Anyway, I digress.

So Monday I went to the hospital at 10 for an 11 am appointment. They put an IV in me for fluids and electrolytes, but no meds. I thought I would be out but when the doctor came down to talk to me he said they wanted me awake so I could tell them if they were in the right spot. This didn't sound like an enjoyable concept but I guess there is a better chance of it working if you can get the medicine as close as possible to the correct spot. I went up about half an hour or so later and the worst part was laying down on the table. They had a couple of pillows that went under my chest and this big foam cut out with a mirror under it to put my head on. This and laying on my back flat are the most painful for me currently. I told him so he said to try to get in a comfortable position, but I told him there was no way like this so lets just get it over with. He was concerned I wouldn't make it but afterwards said I was a trooper as he couldn't believe how I didn't move. I was too afraid to move, and also figured it would go faster so I tried to zone out.

First they put a local in my neck. That burned a lot but I've had worse so whatever. After that they put in the contrast, and then poke around, whilst continually taking x-rays, to see where they are near the nerve and spine. At times I had the strongest stabbing pain down to my right third finger and I told him. The procedure is quite interactive! That happened about twice I think. I also think it mean it was near where he wanted to get so it was good. The pain would go away pretty much as soon as he moved the catheter away from the spot. It was freaky having someone mess around with your nerves and feeling how they control different parts.

After he found the spot he had to push the medicine in. They go very slowly with this,especially, as the dr explained after, that the nerve area was quite narrow. The extra pressure can cause more pain whilst injecting it. Thankfully it didn't really with me and next thing I knew we were done and he was cleaning up the iodine. They sat me up carefully and I was feeling okay, a little light headed but not too much. The dr then showed me the images of my spine and the injection and explained what he did and what I might experience. He told me to rest the rest of the day and put ice on my neck if it hurt, and I could take pain killers if I wanted, but I usually avoid those like the plague. Some nice wine is much more preferable to me. Then I was wheeled back down into the nurses are where my parents were waiting for me. All in all not the first choice of things to do with free time but it's nothing compared to what I've been through. The hip surgery still remains the all time tops of nightmares, and the brutal ER visit last year the second.

I iced and just vegged on the couch for the rest of the day yesterday and came to work today. Taking it easy. Have some mid back pain on the right side but think that's more from being a couch potato the last 7.5 weeks as it's been getting worse for about a week. At this moment I'm icing my neck as it was hurting after going out for lunch. Should have had a liquid one! Ha!
So that's that and we will see if it (G-d willingly) kicks in and works in the next few days. So far I still have pins and needles depending on how I'm standing/sitting and stabbing in my neck depending on how I move, but as he said, it can take a few days. Fingers crossed!

Bit of a roller coaster

2009-07-10T10:11:00.005-04:00

Yesterday I had an appointment with Dr. Ahmed, the anesthesia pain doctor. First I met with his assistant/resident and was asked a million questions and then examined. More agony. Then the doctor came in, he was very nice, but of course had to do his own exam, so more torture. I was a wreck yesterday with pain from all the twisting and moving and bending.

Anyway, first the resident mentioned something about having an electric stim implanted in my neck with a battery pack under my skin on my hips. My hips are big enough and I don't really like the thought of having things implanted in me that shouldn't be there. I said that sounds a bit too permanent for me. I was quite surprised he mentioned it even before mentioning the epidural. A bit fishy, perhaps he's doing some sort of study with it. He also told me he thinks I have a rotator cuff problem and wants me to have an MRI. I said fine, I've been trying to get the doctors to give me one for 3 years, but I can't do it until my neck is sorted because I can't lie down on my back flat. Then he asks if I've had an X-ray study of my neck to see if it's lax. I was like - dude! seriously? My whole body is lax - that is why I was diagnosed with HEDS/ hypermobility disorder! I told him I wasn't going to waste my time and money (and I don't need the extra radiation, Lord knows I've had more than my fair share) on something that we all know is a fact already. It's not like it's going to prove something and give us a magical solution to fix this. I passed along this info to Dr. Panagos who said, and I quote, "The name of the game is strengthening. Of course you are lax because of the EDS. There is a rotator cuff component to everything, but I think it is related to your neck versus a separate problem. Once your neck feels better, we will see how much pain is originating from the rotator cuff." I'm going with my trust in him, he knows my body slightly better.

Anyway, Dr. Ahmed was very nice and at said I could have the epidural. I asked him how soon and he said he'd check the calender. First he came back and said the earliest was the 20th! I looked right at him and said there was no way I was going to make it that long. (Today is 7 weeks of this crap!). He went back and then a few minutes later returned saying he could ask some other doctors to shuffle around so he could get the OR on Tuesday afternoon (not his usually scheduled time). I was so so grateful.

Then of course something had to happen. Right before I left work last night I received a message from Dr. Wu's office that he wanted to do one more test. I flipped, especially since I tried to ring back directly and they had the service on already. I spoke to his office this morning and the assistant knew nothing and said I could ring Dr. Wu in Queens after 11am. I have to find out what this is about because now that I'm scheduled for Monday morning (oh - did I forget to mention that? Dr. Ahmed's office just rang and said they had a cancellation for Monday am so they gave it to me!) I am not wanting to delay the procedure for some blood test when everything else has come back perfectly normal.

The stress is killing me! Fingers crossed it all works out and I can have this sorted on Monday!

Results of some kind

2009-07-08T12:11:00.003-04:00

After driving Dr. Wu's assistant insane for the last day I finally have the results from yesterday. I rang him again at the end of yesterday (Tuesday) and he said he'd ring again and then I rang him this am (yes I'm persistent) and he said they were meant to come through this am but had not yet. I guess he rang them again or the lab has ESP as a few minutes later I received a fax with the results. I knew all would be fine, but whatever, it's done. I faxed them and the earlier results over to Dr. Panagos, sent him an email saying I was faxing them, and then rang his office to speak to his assistant. I realised I hadn't thought about if I need pre-approval for the injection or not and I was sure the dr's never thought about it, so wanted to find out for sure, I am trying to avoid any more delays. I told them I needed a CPT code so they said they'd ring the insurance company to find out. Poor Dr. P probably can't wait to get me sorted so I stop sending him emails constantly and driving his staff batty. I just need this sorted and quickly, Friday will be 7 weeks of this rubbish. I know there are people worse off than me but enough is enough. I have one medical nightmare after another and I'm just so over it. I've also lost humongous amounts of patience with everyone and everything (not that I had that much to begin with). I just want to feel like myself again and have my life back.

So, here's to praying I can get the injection without any more complications or delays by the end of THIS week and that it works! Please.............

Blood

2009-07-07T17:47:00.003-04:00

They took about 4-5 vials of blood from one arm, then cut my other arm and waited to see how long it took to stop bleeding. Thankfully only 5 minutes - and they said that was good. So...waiting for the results of the platelet test. The lab said they should have them today but the haematologists office insists it will take 4-5 days - so I'm trying to not get my hopes up that I might actually get an injection this week.
Waiting for results to be faxed to Dr. Wu so he can fax to me so I can fax to Dr. P.
Time is going too slow at present.

Just as a reference - came across this article on ehow
http://www.ehow.com/how_5006778_cervical-radiculopathy-due-bone-spurs.html

Insurance and doctor hell

2009-07-06T15:41:00.002-04:00

I won't bore you with the varied and numerous details about trying to get a lab and a doctor work together with ones insurance company when there is a daft blood test that is only done at particular places, but think of a very frustrating thing and then multiply it by 100! I swear, the more ill you are the more difficult it is to get treatment. Something has got to give in this bloody country with health care!

Just to give you an idea - the blood work taken a couple of weeks ago, one set cost over $700 - UHC paid $30 of it. (this was w/ an in-network lab, G-d only knows what would've been charged for an out-of-network lab) WHY CHARGE SO MUCH FOR A TEST THAT IS ONLY $30, if that??? The other set was over $800 and UHC paid $40. Now this is great if you have insurance, but for those millions of people who do not have medical insurance, why are they getting charged these exorbitant costs? It's no wonder you can go bankrupt and lose your home from being sick. Congress better sort this out and properly soon!

So the long and the short of it and what should probably be a few valiums later, I am going to Mt. Sinai tmrw am to the Phlebotomy lab for a bleeding test and a Platelet test. Even though Dr. Wu doesn't have privileges there, they are (Thankfully) letting me have the blood tests done there. Most hospitals won't let you do that - because everyone in the medical field are evil horrid people. Sorry I do have a few dr's I like but at the moment I hate the whole field.

Oh - and the pins and needles are worse so nerve damage is progressing - hopefully by the time we sort this out it won't be permanent. ARGH!

Day from hell

2009-06-26T10:15:00.004-04:00

I just am SO wiped out still from yesterday and have this horrid headache now for four days and I'm sure it's all stress.

I spoke to Dr. P yesterday and he said after consulting with some colleagues they agreed that I should have a blood workup to make sure I don't have any underlying blood conditions. The reasoning for this is that because my vessels and tissues are so friable, they don't want me to form a haematoma whilst doing the spinal epidural, as then I would be paralyzed. I appreciate the caution, but it also delays everything. His assistant gave me a list of 3 haematologists but said that I needed to blood taken first so I could bring that with me and to go to my PCP as soon as possible. It didn't make sense to go to the PCP for blood when she had nothing to do with it, but the assistant sounded so sure I said ok. Being brain dead, I just do what I'm told. I rang up Dr. Rosen and her office said to come in. Which I did. And then I sat and waited for over an hour to see her. And whilst she's normally very understanding and accommodating, she was uncomfortable taking blood that she wasn't interpreting and not really knowing what was needed. Which I have to say I agree with. It didn't make sense to me and I did ask Dr. P's assistant over and over if she was sure that's what I should do. So I left and was quite disheartened. I picked up some food on the way back to the office as it was about half two at this point. When I got back I rang the first haematologist on the list from Dr. P. That dude was retired so the put me on to another dr. Of course my luck was that the person answering the phone was on her first day and knew nothing. She said she would have the other girl ring me back when she returned. In the meantime I rang Dr. P's office after finally inhaling my food, and filled them in. I then rang the next haematologist on the list, a Dr. Wu. Thankfully he was able to see me at 16.15!

Now you have to understand that throughout all of this I was under the impression I'd have some blood drawn, wait a couple of days and all would be groovy and I could go get the epidural. You have to imagine my surprise when Dr. Wu, after asking me a ton of questions about bleeding, explained the procedures. He first takes some blood and then sends it off for (I could have this backwards so excuse me) I believe the coagulation studies, which take a WEEK!!! THEN, after those results, he has to send me to a special lab at Beth Israel where they take more blood and do some sort of platelet study, which takes a couple of days. Whilst hearing all of this all my head is doing is calculating how soon I am actually going to be able to get this epidural. And it's not till after the 4th of July weekend by my calculations. All of this make me a very unhappy person.

So after I leave Dr. Wu's office, I ring Dr. P and get to speak to him. I was sort of flipping because no one had warned me about the length of time. He said he has to make sure about this and I do appreciate it because the worst cast scenario is that I bleed and get a haematoma on my spinal cord which would paralyse me. I don't really want that, but at the same time I am losing my mind from the pain. I'm at the point that I'm actually trying to convince myself it's all in my head and I'm imagining the pain. If only! So I ask Dr. P about Dr. Rosen's suggestion on trying neurontin, which he says is similar to Lyrica. I have been SO afraid of Lyrica because I've heard such horror stories. So he said sure he'll ring in a script for me. Groovy.

During the bus ride home though I was debating about it and when I got home I decided to go online and look up more info before I picked up the prescription. Very contradictory reports but some positive about nerve pain (the weight gain totally freaks me out) but in the end I decide to go ahead and try it. Ha, like anything is easy at this point. I get to the chemists and he tells me the doctor requested a specific number of pills, but the insurance co will only fill a lesser number. I said that is fine, as I am only going to try it for a week or two until I get an injection. He says ok, and puts it into the computer, which of course comes back saying that the doctor has to ring the insurance company for prior approval, and that can take 2-5 days. At this point I don't know how I didn't just fall on the ground and start wailing. I think I was too tired.
I rang my mother and ranted for a while, because everything that should just be simple isn't. I hate insurance companies and I really hope the President gets his public health care option, because we really do need to level the playing field here.

So that was my day from hell. I've emailed Dr. P today about the prescription problem, and I'm sure the pharmacist has rung him as well. So now it's a waiting game to see if I will get any relief or I will jump off a building waiting for some.

Venting for the day:
And if I hear one more person whinge about having a cold or the sniffles I just might kill them. Someone on FB yesterday went on and on about having a little cold and how he was sent home from work and was devastated. PERSPECTIVE PEOPLE. I know I'm not as bad as some people, but come on, a bloody cold!?!?!? Get over yourself!

Humpty Dumpty strikes again

2009-06-25T10:32:00.003-04:00

ARGH! I just want to scream! Or jump off a roof, or in front of moving bus, but there's that daft thing in my head called a conscience that won't let me. I CAN NOT TAKE THE PAIN ANYMORE.
Tomorrow will be FIVE WEEKS of agony with this neck thing. And it's bad. I can handle "normal" pain, after all I've been through I definitely have a very high tolerance, G-d knows, but this is slowly driving me delirious.

I am sad to report that the shoulder cortisone injection and the trigger point injection did absolutely NOTHING NOTHING NOTHING. I emailed Dr. Panagos on Monday and didn't hear back, he's busy I get it but I'm being a selfish person for once and need help. Tuesday I rang his office, and his assistant said he was on the phone but would ring me back directly. Unfortunately he didn't get to until Wednesday am. He did leave a message apologising and I rang him back as soon as I received it. He asked me a bunch of questions and agreed that something needs to be done. I have no life, I get to work, by about 16.00 I'm dying in agony, then I go home directly after work and lay on the couch until bedtime, and in the middle drink wine and take klonopin hoping it will help me sleep. I still can't even lie flat on my back. Anyway I digress. Dr. P said he had put a call into Cornell for a consult as he wants me to have the spinal epidural in a hospital setting. I'm ok with waiting an extra day or two so it's done correctly but I need to know that it's going to be done soon. He said he'd ring me back and I told him I'd be in the office until 16.00 and then had a hand dr appointment and he could ring me on my mobile. Sadly I did not hear from him at all. I ended up sending him an email around 20.30 asking if he had "any news at all???". My mother laughed at that. Hey, I'm desperate. I did ring his office about 20 minutes ago and spoke to his assistant. She said he was doing a procedure and would get to him as soon as possible. I said even if he just has a message and she rings me back, I just need to know there is a light at the end of the tunnel because I'm in misery. I did apologise for being completely brain dead as all this pain has made my brain turn to mush, even more than normal!

On another note, I saw Dr. Melone yesterday. I've been putting off this appointment because last year he said if the cortisone injection didn't work I'd have to have surgery. After my trip to London though and only using my big camera for 3 days, then suffering for a week after, I had to sort something out. At least the surgery is much more minor that the last 4, and the recovery seems to be quicker. I will have a splint on but will be able to use my fingers and go back to work in a day or so. I need to find out how long it will take for my hand to be in "working order" as well as if I will need PT after. Both from a time and health insurance perspective, since they only give you a very limited number of PT visits TOTAL per year. That might work for regular people but not the special ones! I also can't schedule it till I have this back thing sorted out. I can't believe I have to have another hand surgery. It didn't really sink in until today.

Anyway that is where I am at the moment. At least I have a gorgeous new niece and brilliant nephew to divert me on occasion.

EDS

2009-06-18T13:53:00.002-04:00

Was reading another blog by an EDS sufferer and thought she described it as basic and easily as possible, so wanted to copy it because it's exactly the same for me. For her complete blog check here.

"Due to the EDS, every collagen cell in my body is faulty and is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible…but pushing our joints to their limits (as with stretching, yoga, Pilates, heavy-lifting) does long-term irreversible damage.

Practically speaking, this means that my joints are all incredibly unstable and frequently dislocate. Some of my joints bend completely backwards (I can do neat party tricks like bending all of my fingers to touch the back of my hand) while other joints like my wrists and knees bend about 5-10 degrees backwards. The muscles around every single joint also tend to tighten way up, to do the job that my tendons and ligaments aren’t doing: keeping my skeleton in one piece. Dislocations and always-tight muscles = whole body chronic pain...

Think of EDS like extreme rheumatoid arthritis in every single joint, with the addition of random dislocations. And “every single joint” means just that: fingers, wrists, elbows, shoulders, ribs, vertebrae , hips, knees, ankles, toes, etc. People with Ehlers-Danlos Syndrome experience acute chronic pain in some or all of their joints and experience neuropathic (nerve) pain in some or all parts of their body, and some even have heart defects that can cause sudden death. Most of us have additional problems with vision, digestion, migraines, pregnancy, and our jaws and teeth. It's an all-encompassing disorder. I have the "Hypermobility Type" of EDS, and my most serious symptoms are in my entire spine, hands, wrists, ribs, knees, and hips. Thankfully, I do not have the "Vascular Type" of EDS, which can cause sudden and early death."