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My wife was diagnosed with scoliosis when she was 13 years old. Her mum and dad noticed she had a large lump on the right side of her back. They were in Brighton on holiday at the time - as soon as they noticed they were on the motorway back home and straight to the doctors. Her own GP knew what it was straight away and referred her to Mr. J. Dorgan - leading Orthopedic Surgeon (at the time), at Alder Hey Hospital.
She was told that she had scoliosis which his curviture of the spine and that she would need surgery. Months went by whilst she underwent tests and scans. Her mum and dad signed the consent form for what they thought was going to be keyhole surgery. The day seemed to go on forever whilst they waited anxiously. Eight hours later the surgeon came and said all had gone well but not what they had expected.
Keyhole surgery was a no go. She had her whole back opened up, part of 6 ribs removed and metal rods (harrington rods) attached to the spine. The ribs were mashed together and put inbetween the vertabrae before the rods where attached. It was quite horrific and she spent time on machines that her parents had no idea about. She was very ill for quite some time.
We met many years later, and although she always suffered with back ache (nothing like before surgery), she was told she was able to have children but would have to get plenty rest. Our first child was born at 34 weeks. My wife could not carry full term due to the pressure on her spine. She suffered with severe backache during her pregnancy and then for a long time afterwards until everything settled down again.
There is 7 years between our children due to my wife getting herself fit again and having tests to make sure everything would be okay.
Her 2nd pregnancy was more difficult, although this time she got to 36 weeks before our newt son was born. Both boys were born by C-section. A long time passed but things this time were getting worse instead of better. Doctors put her on more painkillers but nothing was helping. Then, she got referred to a Orthopedic Surgeon in a local hospital just to check everything was okay. Everything had gone wrong.
The bad news was her Harrington rods were coming loose and could come through her skin anytime if she was careful. Added to this was a new curve in the lower spine. Shenow has an 's'shaped spine. She had surgery last year to have her rods removed. Unfortunately, surgeons have advised against surgery on her new curve. As her pre-existing curve had been fused, moving around her lower spine would not come without its complications - at this point in time they could not risk doing anything as they could not guarantee the outcome.
More to come - she has problems with the discs in her neck. This is due to the pressure of the rods over the years. This is causing problems with her hands. For the past 8 months she has been having physio on her arm and hand which swells so much it hurts and she is left with no feeling in it for long periods of time.
As of this week - her knee and above on the same side as what we call her dodgy side have also started to swell.
My wife is 31 and we can't believe what is happening. The future looks bleak and she has changed so much. She is the first to say that she doesn't recognise herself anymore - her wheelchair arrived from the NHS in the next few weeks.
Please do not read this any panic if you have recently been diagnosed with scoliosis. Everybody is different and surgery these days is so far advanced - just please to anybody who reads this always get back ache checked out. People dismiss it as something that is normal - its not, you never know what it around the corner.
You know how you always hear those stories on TV and in the papers, etc. about people with these illnesses and pain, but you never even imagine it would happen to you. Well, for me it did. I have Scoliosis. Never heard of it? Neither had I really.
Well, I was 14 and our family was on holiday. As it was boiling hot I was wearing swimming costumes and shorts etc. One day my Mum noticed that my right shoulder blade stuck out considerably further than the other, we didn't think too much of it at the time, she assumed it was down to bad posture! So, afew more months went by but I gradually started to get bad pain in my back whenever I had been walking for awhile, or just stadning still or sitting hurt. It did start to become a huge problem, so my parents took me to the doctor. I had to endure the embarassing experience of stripping down infront of the Doctor and my mum so he could look at my back properly. Anyway, he said it was a 'Winging Scapular' which meant the muscle had pulled away from the bone or something, which required no operation and could be fixed by physio.
So went to the first Physio appointment, and within about 10 minutes she looked at me, and said she thinks I have Scoliosis. She never explained much about it, so I spent weeks sat at the computer researching into it, becoming more and more nervous. Soon I was referred to the Orthopedic Hospital, where they properly diagnosed me with scoliosis. My spine was in a very clear 'S' shape, with a 62 degree curve at the top, and a 41degree curve at the bottom. All my ribs in my back had been pushed to the right hand side, therefore causing my shoulder blade to stick out. When we sat in the Doctors office, looking at the X-ray, I kept thinking this can't be me. There must be some mix up, how could this have been happening to me, without me even realising it?! It has apparently been caused by a leg difference, 1 leg is longer than the other so my spine grew weirdly trying to compensate for this.
With Scoliosis, any curve over 40 degrees, is considered severe and requires treatment. A normal persons spine, has curves in it but the maximum it will be is 10 degrees. As my curve had progressed so quickly, and quite aggressively they told me surgery was the only option, otherwise I would be in unbearable pain and my lungs would be in serious danger in afew years. Not really the news I wanted to hear. All I could think about for days was, is my life really worth going through all that pain and time. I feel stupid thinking that now :)
I started to make a list, good things about the Surgery, and bad. The good reasons, outweighed the bad by far. I also joined a support group, Dailystrength (see bottom for website) I was able to talk to people in similar situations to me and people who had been through the surgery. I actually began to like the idea of Surgery. No more pain, no more ugly lumps on my back and I'd actually stand a chance of a normal life, without the worry and pain. This will sound bizzare to people, but I actually began to feel excited about the Operation. I couldn't wait to actually be able to go Shopping for longer than an hour, without having to sit down and take painkillers. I'd be able to work in a Shop! As I couldn't stand up for long enough before. My friends promised me they would visit as often as possible, and bring supplies of Chocolate and nice food with them. Their support, and my familys helped me through it also.
The Surgery I was having is called Spinal Fusion. I didn't ask or research too much about the actual operation, I didn't really want to know what they were doing, but this is the basic bits I know. Basically, they take a bone from your hip (don't ask me why from there!). They then pull the muscle away from the spine, so they can access the actual bones. Then using stainless steel screws and hooks, they attach them to the vertebrates securing the bone from the hip in. Over time, the bone fuses together with the spine, stopping it from moving and curving anymore. Fusion can take awhile, but the younger you are and the more you rest, the faster this will happen. You normally spend about 2 days in Intensive care after the operation, then usually up to 5 days in a ward, again all depends on age and how well operation goes. The first day after the op, you can only lie on your back, the second you can sit up in bed, by the 3rd day you can sit up in a chair and progress from there. But this is just what happens on average, some people take far longer and some people less! After the operation, it is advised you rest for around 2 months, so the bone will fuse properly, and like any operation you need time to recover and build up your fitness.
Sadly, after the operation. You can't breakdance or Bungee jump, but I've been able to live with that :) I had my Operation when I was 16. I had just done my GCSE exams, and was starting college in September. So had my operation around the end of June, leaving me time to recover. Everything went well, I can't pretend that I wasn't scared. But the nurses and doctors were very friendly and put me at ease. Also, after the Operation. You are given Morphine. The best part is, you control how much you have. In my case, not everyone gets this! There was a button you could push whenever you wanted some, of course it was limited. No more than once every 3 minutes, but still it was great :) I had Physio after this, which helped build up my strength again.
Every person is disserent though, so please if you have Scoliosis or know someone with it, don't assume their experience will be like mine and different hospitals may provide different care!
After the Operation, I was able to begin college as planned, but I did little walking and exercise. I went through College fine, having a part-time job in a Shop! :) And now have a great job, in Childcare which I love. The Scoliosis is still there, it will never fully disappear. But the pain is considerably less and things are just.. normal again
I have afew Tips to anyone with Scoliosis, or anyone who knows someone with it :
1. Firstly, if you're worried you may have Scoliosis there is a simple test you can do at home. Get a friend or family member to look at your spine as you try and touch your toes. They should be able to see if there is an 'S' shape, or if it is straight
2. Get more than 1 Doctors oppinion, like me my Doctor was completely wrong and I haven't been back to him since
3. Join a support group, or read the forums on the internet. There are loads! My favourite, is: www.dailystrength.org
4. Research, research and research! There are so many helpful sites on the internet, with surgery info and other treatments
5. Pilates - I was doing this for awhile before my Operation. It's very simple, and quite enjoyable to do. It strengthens the stomach and back muscles, and actually helped with my apin abit!
6. Write a list of questions to ask the Doctor, it really helped calm me nerves
7. I know its depressing finding out to begin with, but just remember there are hundreds, thousands even of people in exactly the same situation as you, so you're not alone!
8. Don't be embarassed! I found it made me sound more interesting :) But really, Scoliosis effects 3 in 1000 people aged under 18. So it is very common, just rarely publicised so nothing to be ashamed of
9. If you have the surgery, take plenty of magazines, books. And get people to bring you some chocolate+decent food! Hospital food is rather horrible in my experiences
10. If you're wondering whether to have Surgery or not. Write a list, Reasons to/ benefits and Reasons not to. It really does help, and helps you to think more clearly about it
Quick Points about Scoliosis :
1. A curve under 20 degrees is considered to be no danger at all to your health, and is barely noticeable, (why so many cases go undiscovered) A curve under 40 degrees will need to be monitored every 3-6 months, to check if/ how much it it progressing. Curves over 40, will need to be treated with either A Brace or Surgery. Curves over 90 degrees, are dangerous to your lungs and heart which require surgery aslo
2. Signs of Scoliosis :
Shoulders are different heights - one shoulder blade is more prominent than the other
Head is not centered directly above the pelvis
Appearance of a raised, prominent hip
Rib cages are at different heights
Changes in look or texture of skin overlying the spine (dimples, hairy patches, color changes)
Leaning of entire body to one side
3. Scoliosis generally affects women, it is only occasionally men get it. Scoliosis affects 2% of women and 0.5% of men in the general population
4. Some people can have Scoliosis from birth. But the majority develop it in their teenage years during a growth spurt, usually around the age of 13-16
I hope this has helped you, Scolisis isn't an illness or disease, it's a Condition or describing word if you want, for curves in the spine. Personally, I think there should be much more about it in Schools. Apparently, they used to check all childrens spines years ago, but strangely have stopped now so many cases go undetected