I have TOS for a year now. Am still able to function at a low level, but will likely have to leave my job as it is making my symptoms worse. Perhaps I can be a teacher and avoid sitting down at a computer.
Saw a Vascular doc and spoke to another one (Dr. Sanders). They said I might benefit from surgery. My wife and I are very worried about surgery because of all the horror stories I have read about possibly making your symptoms worse (getting RSD).
Has anyone had good results from surgery? Has anyone been able to regain their previous level of activity? Does anyone know what the success rate for TOS surgery is?

I appreciate any help.

I was bedridden before the surgery and am the same today.

I used to have horrific constant headaches, including a terrible feeling at night as I lay down that my head was swelling and may burst - that feeling left. About 1 1/2 years after surgery, less prominent headaches have returned.

I feel I have better circulation on the right side. My RSD, which was really horrific and I used to lay with my arms on pillows just BURNING day after day, with color changes and swelling, absolutely went away for 1 1/2 years. Now, lesser degrees of RSD are back.

My pain was always an 8 to 10, totally unacceptable for living, and still is. I need to work with my new pain mgt. doc and this will be our focus point.

I became sick because I overworked as an attorney on the computer for very long hours with several warnings from my body that the ergonomics was bad. I ignored it. I remember the day the swelling went up the arm, the neck, and into my brain. I worked for one more year, but then, had no choice but to leave. I don't believe I will ever work again, and unless I have my nurse 4 days a week, AND my boyfriend helping me, then I am going to have to go to a nursing home. I believe TOS nerve damage is progressive, and how fast it progresses varies. But cures? I have not yet seen one, although as God is my witness, I PRAY for others to have one.

Surgery was a breeze and I think it was absolutely worth it.

here's our useful sticky thread - http://neurotalk.psychcentral.com/thread84.html
posts # 20 & 21 have some surgery results, polls & therapy threads and links

several highly qualified surgeons will tell you that the success rate for TOS surgery (as published by them and others) is on the order of 70%. Success is defined as a 50% or more reduction in symptoms based on polling the patient. There is lots of debate as to how accurate this number is, but it is what most of the good surgeons will tell you.

i have had a first rib resection on both sides ~4 and ~7 months ago. For what its worth, i am better now, and still steadily, if slowly, improving. I am not well enough to go back to work just yet, but I am getting close. I'd probably be back by now if I didn't have two small kids and a teenager to look after, but that is just speculation since reality is that i do have the kids and am responsible for looking after them. It takes two years for the scar tissue from surgery to stabilize, so the real answer of success won't be known until then.

as for the surgery itself- very easy compared to living with TOS every day.

Thanks for the info.
I saw my workers comp doc and he said that TOS is not caused by repetitive strain from work. Told him I spoke to an expert in the field who said that my TOS was an industrial accident and that it is one of the 2 most common causes. The workers comp dos said that the expert was a fringe doctor. I thought that was pretty funny.

After working as a bankruptcy and civil trial attorney for ten years, I then switched law areas completely, as I was bored, and worked as a work comp defense attorney litigating potential fraud cases (for the insurance co.s or employers.) I loved reading hundreds of medical reports each month. What's so weird, after reading probably (maybe) thousands of medical reports, I never, ever saw one TOS case. That's how rare it is diagnosed - at least in So. Cal. at the time.

However, having not seen TOS cases myself, I still HEARD of them after I myself developed TOS, and at least in CA, and perhaps at least in Orange County, there really is no question that given the right set of facts, neurogenic TOS is a repetitive injury. There are admitted TOS cases in OC, and that's a fact.

So I'm really shocked, truly shocked, that whoever that doc was / is, would say something so utterly false and wrong to you as the patient.

But, I must say there are what we used to call "whores" (please excuse the phrase) doctors who, for the payment of their exam fee of $1500 to $3500, would say whatever that particular side wanted. I never, ever used those doctors because the judges knew who they were, and I actually saw judges say, "you know what, attorney, here's what I think of your med report", and toss the report in the trash can to make a statement! So the judges and the attorneys know who these "wash-out" (when a doc gives no permanent disability when you know darn well there is), or "buy a doc" reports, and it really is an embarrassment, BUT, for some stupid reason, the insurance adjusters, (or hack attorneys for the work comp patient), still insist on getting these baloney reports. Again, it goes over like a big stink in the court room usually. However, there are sad times when a judge may fall for one of these false reports, and it really is an ethical shame that a doctor, who takes a Hippocratic Oath, would not help a patient. Another big offender are / is the employer clinics, where if you're hurt, yes, they give you immediate medical care, but again, the no-spine doctor says, "oh, you're fine, take this pain med and get back to work." I've seen a few really sad occasions when the worker really needed surgery or time off to heal, and yet was sent RIGHT BACK, sometimes right then, back to work.

If you see this hack again, here are NINDS, NIH and Mayo clinic articles that CLEARLY state the injury can come from repetitive work movements. And, frankly, unless you have an outside hobby, or independent contractor work, or had an accident outside of work, then one has to look at the place where we all spend the majority of our waking hours, and that is our work. And then, if our work involves long hours on the computer, or some kind of repetitive work such as wall paper hanging, airplane mechanic, sewing, anything with a lot of strong arm movements or fine hand manipulations, then one has to look at diagnosing a repetitive strain type of injury. There are very, very few people with "extra ribs" that cause TOS...

Most of the people I have personally met in So. Cal. got neuro TOS from overwork on a computer - next comes a car accident. And then one was from being in surgery and left in a compromising position on the table too long. We have one person here on the Board who developed neuro TOS from an immunization that I am assuming made scar tissue in the relevant areas.

So here are some links:

Yahoo or google TOS, there are now (and this is relatively new) some good articles about TOS. I'll try to find some links below.

http://www.ninds.nih.gov/disorders/t...c/thoracic.htm

http://www.cnn.com/HEALTH/library/DS/00800.html

http://www.nlm.nih.gov/medlineplus/t...tsyndrome.html

God bless you on your path to healing. I happen to think highly of Dr. Sanders - and also Dr.s Brantigan and Annest in Denver. Annest did my surgery. Hopefully you can go back to Denver and maybe see the other two for your second opinions.

I just wanted to add........a lot of the TOS surgery success stories might not be members of this forum. Most of us are here because we have had difficulty finding a dx, tx, or adequate pain control so in our internet research, we found Neurotalk ! There are patients who find the right doctor and the right treatment quicker and after successful surgery, go back to a semi normal life. The surgical complications, RSD'ers, worsening symptoms people are going to find us. There are also people who found us, had successful surgery, and are back to their lives so have little time to come back here (here's hoping we'll be so lucky some day

Thats a really good point Finz.... It would be nice if more people shared their success stories more often, but you're right... after years of this, they're back to (or getting back to) normal.

Hi, and as everyone else here has posted, happy to hear from you but sorry you have to be here. I don't mean to feel like a broken record because I post the same infor often but, I had surgery in 2000. I had the rib resection and scalanectomy. It was a difficult surgery and very long recovery. After 1 year I was completely pain free. I never thought this would happen. I had been in so much pain. Married with 3 young children and a family business that I was expected to run. I was very depressed. It happened gradually but after that one year I was in no pain. I had been on major medication. So much that I don't even remember how much or which. I had to go to Columbia Presbyterian in NY to get off all meds. I checked in on 9/10/01. I watched the next day the second plane crash from my bedroom window and both towers crash to the ground. Within 4 months of being home I became pregnant with my 4th. I had a very successful pregnancy. I had a scheduled c-section and healthy baby. I, unfortunately resurected my TOS during a long driving trip to Disney.

I agree with other posts that once people are better they don't come back. I hadn't been back to this site in a few years until the symptoms returned. I had stayed for awhile at first but went on with my life. I felt guilty for feeling better while all other TOS'rs did not. I have found family here. We all share TOS, but we all share other things also. Being a parent, out of work, horrible pain, or just something silly to say to brighten the day. I

I don't know if there is an actual "cure" as nerve damage is an extremely tricky thing to beat. I do believe the prospects for pain management are there for us to benefit from if we find the right doctor at the right time. I have to take medication for pain to live a close to normal life. I can get up in the morning, get kids to school, go to work, grocery shop, etc. In 2000, I was unable.

Please keep all hope and faith in our medical people, and faith in any religion you believe in. I have also become more compassionate to others needs and that is important also. Sorry I went on so long!! It's like a book!! Linda

Thank you all so much for your responses. You all made some excellent points. My thoughts and well wishes go out to all of you. I agree that the one good thing that has come out of this is that I have become more connected in my relationships and more compassionate to those in need.

I read "ben's stem cell news" every day to see the amazing discoveries bbeing made in medicine now, in the hopes that one day there will be real solutions to these problems (I spoke to a medical researcher and he said that stem scell therapies were only five years away -- I hope).

Saw my worker's comp doctor yesterday and he said that he is discharging me because he just doesn't feel that TOS is work related. I told him that the NINDS website lists "repetitive strain" as a cause. He said my case was complex and work wasn't the cause. I spoke to an Information and assistance Officer with the worker's comp office in Long Beach (where I live) and was told that I am allowed a 2nd opinion from a QME doctor. I said that there is a doctor in Denver who said my TOS was caused by work, but the I & A officer said that his testimony would not be allowed. It seems they have me over a barrel here. There are doctors who will testify that it is work related, but I am being told that their testimony will not be allowed.

Things I am doing that seem to help: Trigger point massage from Carlos Messerschmidt in Costa Mesa, FSM (frequency specific microcurrent) from Susan Kaefer in Santa Ana, and Ice&stretch of my scalenes. I saw a Dr. Saxton (neuro doc) who was great and she wants me to get the 3D MRI from Dr. Collins at UCLA.

Off to the dog beach to let my hairy children play in the water -- one of the few things that raises my spirits these days.