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burdle
07-05-2012, 12:59 PM
Hi,

This is my first post although I have been looking at the forum for some time.

I am English and 54. I work full time in IT and I am senior managment with a lot of responsibility and am reasonably clever. I say this not to big myself up but to try to set the scene properly. To show that I am not just giving up and that I do understand what is being said to me. I spend a lot of time 'googling' scoliosis.

I have 3 scoliotic curves - diagnosed in my 30s - although I always had back pain as a teenager. I just thought that that was what life had dealt me. It never occured to me that there was something wrong. My family did not really do illness, even though my mother suffered from depression and relied on me a lot. . However it also shows that the pain I did have was not impacting my life too much. I was not very flexible and struggled with exercise classes because I could not do a lot of the stretches and so got laughed at in the classes a bit. I got used to being thought of as not very good at sport and exercise but consoled myself with thinking that I was good at my job and I was quite thin.

Things changed a bit after I had my first child. A physio in a class noticed that I was crooked and there began my journey.

In 1987 I went to my first ortho consult who took xrays for his scrapbook (as he put it) and sent me away saying it was quite common but nothing could be done. I was 48*. Only one curve was mentioned.

3 years later and another child and I was having problems - just more pain- a lovely GP (retired) researched the condition and sent me to London to see a scoliosis consultant. He disagnosed a 55* curve and a lumbar curve 35* said I needed surgery as curves progressing 7* in 3-4 years.


Shocked and not sure of anything I said I wanted to wait a bit and have another baby ( never happened). I kept fit tho and dealt with the pain.

I went back to work full time in 2000 - major stress in job, massive redundancies etc, at the same time 3 members of my family were ill and subsequently died - all of whom I looked after as living near. Did nothing about my back but knew pain was getting worse but no time to deal with anything. But I was managing I think...

Afterwards almost to the day my mother died I developed uncontrollable tachycardia and eventaully had surgery for this as kept ending up in A&E. I now wonder if it was my curve causing this ... 3 months after that really bad lower back pain that forced me back to doctor.

He suggested physio - found a good physio and am still there. Only way I get through the week is by constant movement with him on my back. Am hugely selfconsciious of it and my neediness. We have devised exercises- sometimes he is great with me sometimes not but I can't find words to talk to him. Physios don't really get scoliosis - he is the best in area and is near to my work for convenience and it took me ages to even be able to take my top off with him.

I went back to scoilio consult ( new one as old one retired). He says I have 3 curves and bad degeneration BUT they are stable in that my head is balance over my pelvis despite all that is weaving around underneath. This is good. He say the op would be very extensive now - originally it was from T6-T12 now from T2 - L5 and he says very high risk. All curves are structural. He referred to pain management. he hasn't ruled surgery out but says it may not help with pain!


I am writing this because I cannot cope any more. I feel like two people - the competent one who deals with work etc. and the rubbish one who cannot stop crying the minute she gets in the car because she cannot manage the pain and the drugs and feels so rubbish and SO PATHETIC.

The pain management guy says lets try injections but they will only be temporary. I feel I am jumping through everyone's hoops at the moment... I will give it a go though.

My physio also wants me to try other things. I have tried acupuncture, Hypnotherapy and I did a bit of pilates. It did not help much with the pain which is unrelenting . I take tramadol and gabapentin which is not ideal as it makes me slightly off the pace at work. Physio is a bit grumpy with me often because he doesn't have any other patients like me. All of his get better and go away I think. He does not understand that I cannot do a lot of this stuff as it is daytime hours and I go to physio in my lunchbreak or after work and it just helps me manage. I just really want to be left alone to do this. I pay for it after all - I am on call at work which pays for it. I am lucky to have a job that does but you see everything is built on sand.. It's just that I have done these other things before and they don't really work. I do my exercises every day and I cycle a bit to keep moving and I play a bad game f badminton but I do try and keep fit and I keep telling myself that I am managing but inside I think I am falling apart...

I don't think anyone can help me but I am alone in my office now as everyone has gone home and I am crying which is a bit pathetic.

I think I need help before it gets too much. x I always expect to be told to 'get a grip' - this is colloquial for 'pull yourself together and stop moaning' for you US guys!

Thanks for reading... Typing is cathartic!

mabeckoff
07-05-2012, 01:28 PM
I do not have any advice for you but I would like to welcome you to this forum. The people here are great and they help me get thru the day

jrnyc
07-05-2012, 01:57 PM
welcome burdle
i am sorry you are having such pain...
but i am sure there is a doctor who can help
you...patients with 100 degree curves have had
successful surgeries...so i would think there is a good
chance for you, too....
i do not know how the surgeons are in England as
far as scoli goes...
i do know that in the States. surgeons do not promise
anything, but most tell patients they may well get pain
relief after surgery heals...
patients on this forum have reported cases of pain
relief after healing, from minor relief to major relief...

i hope you can find the right surgeon to help you...
the shots can often help, but that is a temporary fix....

jess

titaniumed
07-05-2012, 11:04 PM
I also have a similar story.....and to get to the chase, hearing that degeneration has run rampant, and that my surgeries were going to be extremely difficult was a bit taxing......but my pain at the end made my decision. I just couldn’t go on. It was a time for bravery and change......my time had come.

I sold a precision manufacturing firm with 50 employees. I wasn’t dealing with doctors, it was attorney’s right up until the end. It was stress at its maximum. I also had to keep everyone working .......on 100mg of Percoset in recovery.

You are not the only one, there are many of us here. So many that waited all these years......hanging on, any way we can.

I talked with my surgeon for about 2 1/2 years....It was such a tough decision.....At the end of that period, there was no decision. I set my date and went into shock. I had prepared for years, for a massive change. This could happen, that could happen, I was warned about complications. What could I do?

It worked, and it worked well. These surgeons saved my life! I still cant believe it.

If you have not seen a scoliosis surgeon recently, you should. Just go and talk, it doesn’t mean you have to commit. In the mean time, keep reading and posting here, your questions will get answered.

You are a brave one, and we are glad you’re here!

Ed

susancook
07-06-2012, 05:22 AM
Welcome to the forum! I am also contemplating surgery....still unsure, but not in as much pain as you seem to be. Mine would be from T3-S1 fixation. I have Adult Onset Scoliosis, which is a bit different than yours.

Unsure why the Pain Management Doctor said that surgery would not help your pain. You should ask him why he said that. My doctor, who only does adult scoliosis surgery said that the surgery has the following statistics: 80% have less pain, 15% have the same pain, and 5% have worse pain after surgery. There are also bad outcomes that are infrequent but never the less happen.

In the UK, can you get another opinion? I would suggest wseeing a doctor who is a member of the Scoliosis Society [see this website], have your surgey done in a major medical center, especially a Univerity Hospital. Your surgeon should have scoliosis as his/her specialty, that is, don't have a surgeon who just does scoliosis surgeries infrequently.

So glad that you have sought help, keep a notebook of doctor's visits and notes/questions to ask the doctor.

Whatever decision you make, I wish you well.

Susan

JenniferG
07-06-2012, 05:32 AM
Welcome to the forum.

I agree with Ed. Find the best Scoliosis surgeon (not just an ortho) you can find. Hopefully someone here will be able to offer you some names. Not sure where in England you are but I have a friend who was operated on by Mr. Dunsmuir in Yorkshire and he has her doing everything she did before but without pain. There are other British patients here who I am sure could help with names.

It's worth travelling to get the best. I believe that the best thing you can do for yourself is to find the best surgeon. After that, the risks and fears reduce somewhat in your head and the surgery seems more doable.

I believe, as Ed says, pain eventually makes the decision for you.

You have been there for everyone. It's time now to take care of yourself. Just coming here and talking about the possibility of surgery suggests you're on your way. To a better life.