Hello to you all, this looks like a great group. I have been through so much in the last almost 2 years now, trying to figure out whats wrong with me. It hurts so much just to type on the computer I do it very rarely. I am finally seeing a Thoracic Cardiovascular Dr next week after seeing Neurologist, neurosurgeon, Pain Management, Physical Medicine and Rehab, and finally the neuro said he beleives I have TOS. No pulse when my arms are raised, shoulders abducted ( I think thats what he said). I have had such a rough time with Dr's acting like I'm exaggerationg everything. What is the best type of specialist to work with for TOS? My life has changed so much. My arms are in constant pain, which increases significantly with any use. I look forward to gaining wisdom from this group. Martha in Michigan

I want to Welcome you to our forum.. You will find so many caring and informative people here that suffer from many of the same problems that you do.. It's so unfortunate that it can takes years and multiple Dr's to figure out what is acually causing our problems.. It sounds as though you are finally on the right road by going to see a Thoracic cardiovascular Dr. There is a list of recommended Dr's that deal with TOS that you can refer to on the forum http://neurotalk.psychcentral.com/showthread.php?t=135
Hang in there Martha you came to the right place. There is alot of support here and knowledge.
I wish you the best luck at your appointment next week.. Keep us posted..
((Many Hugs))
Dawn

Hi Martha,
Sorry to have to meet like this but your at the right place.There is alot of valuable info here and support. Depression comes with TOS/chronic pain.
Educating yourself about TOS all the various testing and treatment options
will help you cope.I hope you feel better soon.Gentle
Siccy

Welcome Martha,
did you find our useful links? - tons of helpful sites listed there-
http://neurotalk.psychcentral.com/showthread.php?t=84

finding a good dr is kind of hit and miss- unless you go to one of the big name specialists.

you pretty much have to learn enough about TOS so when you go into a dr you can figure out if they understand it or not.

Hi Martha,
I have much of a condensed version of my TOS 101 on a thread to lovetofish if you wouldn't mind reading that about TOS. TOS is not just about losing a pulse and a doctor that basis his diagx on that one test is not a specialist that you need as primary treating doctor. Many doctors never see TOS in their career and know little to treat it.

It is a compression fo the major vascular and neurogenic bundle as it leaves the area across the shoulders to the area behind the collar bone and in front of the first rib. This is why when you hold your arms up to paint, blow dry hair or talk on the phone it makes your arms heavy, fall asleep, tingling, numbness, or any other variety of symptoms. As the arms go up and back it closes the outlet.

Much of society will lose a bruit or pulse, but it take many more hands on testing to say TOS. At least an hour plus exam to really understand and reproduce the symptoms.

Welcome to the forum, soon you will be better informed then most of the health care providers you see.
Dianne

Oh Martha,

I am so sorry that you are in such pain. Welcome to our TOS family.
We have some extremely knowledgeable and supportive people.

We are here for you.

Hi Martha,
Welcome to the forum
I hope you find help that you need herewe are a great bunch of people. I can help you find medical articles should you need them to help to educate your physician.

It took me two years to find the right Doctors as well. My ordeal was horrific especially with the workers compensation board here in Ontario. Because I got a diagnosis of thoracic outlet syndrome the compensation board immediately denied me and it took me three years of fighting with the help of my union to get the pay I deserved.

I saw a vascular surgeon who did a first rib resection and scalene muscle removal. I had complete success until about six months after surgery when my physiotherapy increased all my symptoms recured and I am again suffering with major pain and neurological symptomology.

Please ask for help when you need it we are always here to help you.

I do hope you find us to be the help you need !!!

With love and hugs,
Victoria

Hi Martha,
Welcome to the forum.
Both Dimarie and gibbrn offered up some excellent comments.
Soon you will be more informed than most of the people treating you and be careful with what you do because even if you feel better something can set it off all over again.
I was diagnosed with TOS but I also could have shoulder and neck problems that create the same symptoms.
So don't freak out about TOS yet because it could be something else. Do your research and ask questions.
Also it may be helpful to keep a journal or notes of what hurts,how bad, how often, and when.
I wish I would have done this because sometimes before or during exams I felt good and had some difficulty explaining my symptoms on the rare occasions that I felt good for a day or two.