Unsure about surgery
 

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.

Usc Tro
 

First of all... Sorry, you have TOS as TOS is one ugly monster. If caught early you have a chance of regaining your previous bodily functions more rapidly than most of us here.

SECOND, you got a raw deal from the W/C doc. He's obviously NOT educated in TOS therefore he does NOT know how to treat your condition. You are allowed to see any physician you cHoose through W/C so JUST DO IT!

THIRD, if you are local in So Cal go see Sheldon Jordan, MD Neurologist/Pain Management in West LA or Dr. Agnew in Santa Barbara docs who are above by far the most educated and wise physicians in Nuero conditions. Get the testing done which is needed to rule out any other conditions. TOS is considered a condition when everything else is ruled out. Anyways, these docs will tell you the ABSOLUTE TRUTHFUL FACTS. If surgery is needed, then thats for the future. Get it dx'd by a reputable MD then think about surgery as your last resort.

I second cyndy's comments...saw the esteemed Dr J myself this AM for a scalene block :)

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.

?what
 

hhhhm. Can you sue an I & A officer if they mistakenly give you the wrong advice? hhhhm, I don't think so, they aren't an attorney. hhhhm, I wonder why my judge sent me to Denver to actually see TWO Denver docs, AND admitted their opinions into the record? hhhhm, what is the difference between my case and yours?


why, why, why... I find myself asking this at least once per month...

Let's see, your entire future is at stake - that's one side - this includes your HEALTH, your FINANCES, your CAREER, your HOME...

and on the other side you have judges who have gone to law school for four years, then taken a State Bar exam where approximately 1/2 are booted as not good enough, even though they paid $400K for their schooling, and studied probably 60 hours per week for 210 weeks approx. Then they work for years in the field, honing their expertise. And finally, later, after they've gained the respect over YEARS of incredibly hard work and long hours, in front of their peers, not having done anything particularly horrible in their private life, then they are lucky enough to even be considered for appointment by the Governor to sit and make decisions over other human beings lives, the key word being DECISION only. They can't advise you really, or fix a bad case, or even ask too many questions...their role after all of that schooling is just to listen and decide if the evidence brought to them is worthy. Those bringing the evidence, doing the arguing, following the process rules, Evidence rules, Civil rules, building negotiation skills...well, those are the folks who got up to the "governor's choice" point but for whatever reason decided to stay "just attorneys."

Then you have the insurance / employer company attorneys. These attorneys also have had at least four years expertise in this area of law, and perhaps two or more educational years so that they can claim a specialty of study...they focus their skills on learning how to tear apart a bad medical report, what requirements must be in each report, all of the laws regarding prior injuries, employment or personal, including how to handle any kind of counseling or mental treatment for their client's best use, accident breakdown expertise, and lots and lots of electronic calculators all designed to get them the lowest, lowest if ANY figure.

And this is who YOU are going up against by yourself?

Would I head over to the Iraq war with just a Juicy Couture warm-up outfit and a fake gun? Do I really think I could talk myself out of the war because I was pretty smart in highschool and I think attorneys are a bunch of idiots?

There is NO part of work comp that is supposed to be do-it-yourself. I mean, we're not making ceramic bowls at the local Y at the WCAB.

You need to RUN to find the BEST work comp expert in your area, and as you already appear to know where your work comp board is, then I'd suggest sitting there in the applicant waiting room area and just watching which attorneys seem to really GO FOR IT and FIGHT for their clients. They will be the ones their working as fast as they can, cuz they've got too many clients...

P.S. I and my friend are both attorneys, very good ones in fact, and we would NEVER, EVER go into court to represent ourselves. Period.

Thanks for the advice. I spoke to an attorney and he said that the I & A officer was incorrect. He said that if I get a reputable doctor to say that my TOS is work related, then I have a case. Told the attorney about the doctor in Denver and he said to forget about him and to find a doctor in my area. I am not sure why this attorney seems to be uninterested in testimony from Denver docs.
I will talk to other attorneys.