[Iris]

I am wondering if anyone has made the decision not to have surgery. I have TOS and no pain. I had numbness and coldness in two fingers, but I began physical therapy in May and my fingers are much better. I am seeing the physical therapist twice a week. I don't have any pain (and never did).

I don't want to have the surgery because I am functioning fine. In addition I am concerned about complications post surgery because I always seem to develop infections, have lung complications etc. So I would like to know whether anyone here made the decision not to have the surgery after a surgeon recommended it. Thanks!

[mspennyloafer]

if you can get away without surgery i would def go that route unless you have a long c7/cervical rib

how were you dx'd

[Iris]

Originally Posted by mspennyloafer

if you can get away without surgery i would def go that route unless you have a long c7/cervical rib

how were you dx'd

I had a lot of tests. a functional ultrasound where they measured the blood flow to my fingers while moving my hands in different positions, ct scan with contrast, emg, mri of the cervical spine. All four of the surgeons whom I saw concur that I do have it. I just want to understand better what the risks are of doing nothing about it other than PT.

[kellysf]

I had surgery and am much worse for it. If I were you, without pain and functioning fine, I wouldn't go anywhere near surgery.

The surgery is significant and in a very region involving complicated structures. The potential downside is big and there is no real upside for you if you're doing fine now.

Good luck,
Kelly

[Jomar]

I would definitely go by how you feel and how your symptoms are , if you are functioning well enough and PT is helping stick with it.

I think quite a few people get by with TOS, my pulse still cuts off in certain positions but I can handle that & adjust to it, and haven't had any clots or vascular problems at all.

If you don't have a lot of swelling, clots, or pain issues why have surgery....

Sometimes surgeons just like to do surgery....and make $$$

[stos2]

Originally Posted by Jo*mar

I would definitely go by how you feel and how your symptoms are , if you are functioning well enough and PT is helping stick with it.

I think quite a few people get by with TOS, my pulse still cuts off in certain positions but I can handle that & adjust to it, and haven't had any clots or vascular problems at all.

If you don't have a lot of swelling, clots, or pain issues why have surgery....

Sometimes surgeons just like to do surgery....and make $$$

Jo Mar you are so right, if you don't have pain issues and you are improving with physical therapy , i would give it some time.
Also, sometimes we need more than one physical therapist to heal us and we need to keep researching, as in my journey I have learnt that many of us have musculature, postural and structural issues that the compression can be coming from and that it's the muscles that hold the ribs in place. Things can go into dysfunction because of that and surgery may not be the only answer! Theres a list of therapists on this forum that you can refer to if you need to.

Also, if you are still having coldness in your hand try abdominal breathing exercises at least for 20 minutes at a time and your hand should warm up. If you are already doing them thats great.

Or see if it's positional for you, does a change in position improve your symptoms, which means the compression can be mild and it doesn't warrant surgery atleast for now. I am an Atos patient and pain, swelling and coldness was definitely a big issue before surgery and I don't have any swelling or pain in my fingers now.
Hope that helps good luck!

[jkl626]

Originally Posted by Iris

I am wondering if anyone has made the decision not to have surgery. I have TOS and no pain. I had numbness and coldness in two fingers, but I began physical therapy in May and my fingers are much better. I am seeing the physical therapist twice a week. I don't have any pain (and never did).

I don't want to have the surgery because I am functioning fine. In addition I am concerned about complications post surgery because I always seem to develop infections, have lung complications etc. So I would like to know whether anyone here made the decision not to have the surgery after a surgeon recommended it. Thanks!

if you have no pain and your life is not threatened dont have surgery at least not yet. I have alot of pain and my dr. said i might elect to have surgery if I want to go back to my regular work. The surgeons werent as sure and after seeing them I decided not to for now. I have been doing pt for almost a year,but only a good one for the last 4 months and I have been improving alot but not enough to go back to my regular work.I amy consider it again in the future,because sometimes the pain is too much to bear.I only have ntos though.

[winic1]

the first two specialists I saw, at very big name east coast places, immediately said do surgery to remove rib (like in minutes from getting my images, which were a single mra and a single x-ray). First one wouldn't even address the issue of scar tissue, tho that was also clearly involved, second one said they'd clean it all out, as well as have a collarbone specialist rebuild my collarbone which had been broken and repaired already (why? they just do).

Third one, at another big name place, mixed someone else's records in with mine, and so botched diagnosis, so I'll never know what he finally would have come up with, tho he finally got incontrovertible images of the scar tissue that was actually causing the vtos problems.

Fourth one, back in NYC, did some further imaging, said the problem was solely caused by excessive scar tissue, bones & spacing were fine. Said even tho he was a surgeon, he would NOT, NO, NOT recommend surgery because messing with scar tissue is more likely to cause further damage, and in someone like me who is known to scar excessively, only cause more scarring and more problems.

Until something happens or progresses to where there is no choice but to do something, or someone can tell me how they address and prevent the scarring issues, no one is touching me. Chopping out healthy body parts is not something to be done hastily or taken lightly. And what I was reading at the time indicated that scarring after the tos surgery was one of the major reasons for it failing, and that even in people who have normal scarring responses, let alone someone like me.

[heybro]

so far physical therapy seems to be helping me. i will know in the next month she says for sure.

no doctor has ever told me to have surgery. most of them say it is up to me and so that doesn't help really. they say to do it if you want it.

one did tell me that he has a 100 percent success rate, which kinda scares me.

[Iris]

the issue for me is that my symptoms are not interfering in any way. However, I don't want to not have surgery if that is the right thing to do. an eight week minimum recovery also seems like a very long time, and that is if there are no complications.