Dear members of this wonderful forum,

since we do not have such a wonderful forum here in Germany that deals so extensively with my desease - thoracic outlet syndrome - I was desperately searching the internet for some help.

I am totally overwhelmed to find so many nice and compassionate people here, it is incredible and already makes you feel a bit better.

I hope that my English is good enough to explain what I have experienced.

Well,now a bit about me. I am 50 years old, married for 22 years and we have to boys (17 and 14).

I have hashimoto desease and myofascial pain for about 20 years now. About 18 months ago I felt that my left shoulder and neck were tightening up more and more and six months later I decided to go to my orthopedist. He just told me that my shoulder was fine and that I should see a physio. Well I saw about three different physiotherapists and the neck and shoulder problem got more severe. I have developped horrible neck pains that overwhelmed me in waves and the doctor had no answer to all that. After each physio it got worse. He sent me to an MRT/MRI (?) and they could not see anything.

Then I started my own research and I always told him that it felt like something was squeezed in my neck above the collar bone and that there were tests to check this. Well, his anwer was that there were a lot of tests out there and a doctor could not know everything.

Then I went to another doctor and I told him I thought I had a scalenus syndrome. He finally sent me to a neurologist who again sent me to have another MRT, this time with elevated arms. Now you could see that the subclavian artery was squeezed and flattened. He also made a nerve testing. Now at last I had a diagnosis and understood why I have these terrible pains at the side of my neck.

On the one hand I am still lucky because my arm feels fine, no problems, only sometimes the arm gets numb at night when being positioned the wrong way or both arms get numb, painful and tingling when I wash my hair or do other things overhead.

I am going to another physio at the moment who is very gentle, doing ostheopathy and craniosacral therapy. Next week I will get trigger point shock waves. I always put all my hope into new therapies but I fear the negative results.

One thing that is very strange - and maybe you know what this can be - is that I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and "my" pain comes in its usual waves. The physio does not know what this is and neither do I.

Well, I hope that my introduction was not too long . I am so glad to have found you because sometimes when the pain is so strong I am very, very devastated and nobody seems to understand. The thoracic outlet syndrome is quite rare here and the neurologist's and the orthopedist's first question was if I would not want to have surgery. Oh my god, never ever. Now my arm is still fine but I have heard that people often have signs of paralysis after such operations and to be honest, who wants to get rid of his first rib right away.

I read about the selfcare program by Sharon Butler and would appreciate if you told me of your experiences.

Thank you for taking all your efforts and time for this wonderful forum.

Welcome. I'm glad you found us. Hopefully you can get some good information and support here.

Kelly

Hi Kelly,

thanks for your kind post. This is a very nice and caring forum. We have nothing like that in Germany.

Do you also suffer from TOS?

Monica

Monica,

Yes, unfortunately, I do have bilateral TOS. It all started in May 2002. I had a left rib resection and scalanectomy in January 2005. Unfortunately, I am much worse since the surgery.

I used to be an attorney and pretty active person. Now I excel at doing nothing (actually I don't excel at it, but I'm getting a lot of practice.)

Take care,
Kelly

Hello Hanna1,
welcome to the TOS forum.

Here is one of our useful sticky threads, full of helpful information -
http://neurotalk.psychcentral.com/thread84.html


"I feel quite fine when being on the physio's treatment couch (?) but as soon as I stand up after the treatment almost instantly the muscles in the neck and shoulder tighten up and cramp and "my" pain comes in its usual waves. The physio does not know what this is and neither do I."


It could be delayed pain or even just that gravity takes over and pulls down - starting the neck and muscles to tighten up again.

Yes, I think it might well be the gravity that rushes into the neck. It is like a huge fist grasping at the neck and tearing at the nerves.

Thanks again for the useful links.


KR

Monica

You are supposed to have the best TOS medicine and Ketamine.

I have looked up the ketamine and it sounds intimidating, having effects on your mind and all kinds of other side effects.

Is there any medication that takes away the pain and has no side effects?

KR
Monica

Hey there, Monica. Just stopped by to say hi. Still not going to work. See doc Monday. Sorry 'bout the heat--it's everywhere. I can't take a normal summer, so you can imagine my wilting this year!
Hope you have as great a weekend as you can.
Jude

Hope the same for all of you.

This morning I have tried the first "Sharon Butler" excercices. I am really, really curious if this will work out, but I tell myself that it will. I do everything as precisely as I can. Asked my children for an Ipod or something like that to do this meditation.

I wish you all the best, relief from your pain and stay as nice and caring as you are. Tell you next week about the program again.

I have a feeling that the osteopathy and cranial things do not work at all but make the pain worse. The physio has done no stretching at all.

KR
Monica