TOS & Surgery
 

Hi everyone

I have just returned from my surgeon's appointment yesterday and I know so many people think Rib Resection is the answer.

Over the past 5 months I have been battleling with my symtoms which are getting worse even with just light daily tasks and not being employed.

I know my GP had said to me in December that I was one of the most extreme cases he had seen in over 20 years of being a doctor.

My Vascular Surgeon yesterday admitted that he didn't think surgery would work and in fact as I was one of the severe cases he saw that Surgery would in fact not resolve my symtoms to make me more comfortable and give me a better quality of life. He said due to my extreme symtoms that surgery would in fact make me worse.

I was hesitant about trying to push for surgery and now I am resigned to the fact that it is not an option for me. I have to accept that I cannot do some things now and engage people to assist me with some of my self care and household tasks.

Please anyone who is thinking surgery will fix you, in a lot of cases it wont. From what I have read in this forum others have not had success either with symtomns returning months later.

I have to modify things in my life to make me a little more comfortable. Driving is a big thing that I am having problems with and I have had to accept that at 42 my driving life is almost over. I can manage short trips but anything longer than 1/3 hour or more is out. The same goes for writing. I now have to engage people to write for me.

It does not hurt to ask for help with things that you have trouble with. The hardest part is accepting I cannot do some things anymore

At least the Drs were honest with you about the possible poor outcome of a surgery. Some drs will go ahead and do it then leave the patient out on their own after the poor result.


But don't give up- keep searching for some kind of therapy that might help you to feel bette and make you more comfortable.


I was at a point during 2003/2004 - where I could only drive the straight highway for any length of time 20 mins max - I avoided city driving as much as I could, with the checking all the cross streets & turns, winding roads & parking /backing up..:(
It was very tiring on my arms & hands as well as my neck and shoulders.

After my months of wc PT sessions I was feeling almost normal , but still had limited use of hands /arms -esp. for any repetitive or fine finger use.

But I stupidly helped dh do some cement work on a shop floor slab, shoveling, carrying heavy bucket of rock/sand, dumb stuff, but I didn't know much about TOS at the time...
It put me into a severe spasms with a locked up feeling in my upper body muscles, all around my neck,chest,shoulders.

Not long after in mid 04 was when I came across my chiro and the really good PT guy. From that point things began to really turn around for me.

Overall it took me about 2.5 yrs to work thru the worst of my version of RSI/TOS and get to the point of being able to do most things, but I still have to pay attention to uses and take a recovery day now and again.
I still go to the same chiro once a month most of the time.
I skipped 2 months this last time , due to holiday & weather and I could tell I was needing to get back on my regular schedule.

Thanks Jo

I am modifying my lifestyle a lot and wish I could have chiro to ease the symtoms but because I am a clotter as well and on blood thinners a lot of therapies are dangerous and stretches are all I can do. Physio, massage and the like can move a clot if I have one someplace in my upper body and also due to medication I am a bleeding risk.

lol@bend and stretch reach for the stars my friend keeps telling me to do to keep my spirits up.

Did the doctor explain why he didn't think surgery would work or help? In everything I've read, it seems like people with vascular symptoms often benefit the most from surgery. Did he comment on whether the surgery would reduce your chance of clotting in the future? I think it may be worth getting a second opinion if possible. From my own experience and reading what others have gone through, it seems like each surgeon has a different take on TOS and treatment, even down to how they perform surgery and what they remove.

He said that because I have severe TOS and although a lot of people get some short term relief he said that in my case he doesn't believe it will help but may make it worse. And thats based on years of experience operating on people with TOS. For me the risks are too high so I accept that.

No not veryone benifits from surgery. From what I have read there are some horror stories from people and I don't want to be another one. Most people find that the surgery is short term and symtoms come back. This Surgeon is one of the best here so I can trust he knows what he is talking about and I trust his opinion. My GP wouldn't have sent me to him unless he knew his stuff so to speak. It's not worth the risk of Dr shopping and ending up worse off which is what he said to me.

I also have a genetic blood clotting condition which is affected by the TOS that I didn't know about until my 1st blood clot 2 years ago.

I honestly do not understand how the surgeons can continue performing the surgery with such mixed results. It's been 6 years since my surgery, with an experienced TOS surgeon, and I'm much worse.

In any field other than medicine, the success rate of TOS surgery would be considered failure.

Good luck,
Kelly

this article is from 2004-

[Thoracic outlet syndrome: Pattern of clinical success after operative decompression

Presented at the Nineteenth Annual Meeting of the Midwestern Vascular Society, Victoria, British Columbia, Canada, Sep 11–14, 2004.

Objective

To evaluate the pattern of clinical results in patients with neurogenic thoracic outlet syndrome (N-TOS) after operative decompression and longitudinal follow-up.]

the rest of it-
http://www.jvascsurg.org/article/S07...467-2/fulltext

at the bottom of that page is more articles and links to follow up on

Thank you for this study. When I first started on this TOS journey, my doctor said 1/3 were improved, 1/3 stayed the same and 1/3 got worse as a result of surgery. Just a few years later, I saw several surgeons saying 85% of patients were improved by surgery. This study seems to bear out the initial figures.

My surgeon followed up with me for one year after surgery. I wonder what he would find if he checked in with us long-termers. Unfortunately, once I was not made better by surgery, I was made to feel like I was part of the problem.

Thanks, again, for the information.

I think I'll copy that article & info to a thread of it's own so others can find it in the future.

Thanks for the study info Jo I found it interesting reading. My son borrowed my laptop and only just got it back to be able to come online.

Thanks for your info and comments also Kelly.

I have had success with our social security system here and finally been approved for Disability payments after 3 months of waiting and appeals. Now that I don't have the stress of running around I can relax and try and get some relief.

Although the surgeon will not do surgery he will still monitor me which is great for me. I guess if things settle the appointments will become less frequent.

In relation to the surgery my GP also backed up the surgeons feelings. My GP has seen many patients with TOS and I am the worse he has seen :confused: I just wish the GP had put all my symtoms together years ago when I started to get worse. I guess there are so many things it's hard for doctors to work through it. In my case I had everything written down including info about when my symtoms started getting worse (5 Years ago)then the penny dropped as far as my GP was concerned. I also gave the surgeon the same list on my last visit and thats when he said the surgery wouldn't be an option for me.