I was told to stop doing strengthening exercises but maybe with botox I could have without aggravating things? If so, is this temporary? I have pretty extensive symptoms. There is blood flow problems from a constantly restricted artery as well as pretty bad neurogenic symptoms-I assumed there was no pt fix to that, but there must be if the doctors still recommend pt with botox. I have done pt and botox but not together--long story--so question 1. maybe that would have made a difference, or am I postponing the inevitable?


Related problem--people say not to push through aggravation of symptoms, but everything causes tingling at least just correcting basic posture. so question 2. Certain flare ups decreased after I stopped strengthening but overall the total deconditioning has got to be really bad for you???

Sometimes it's hard to tell what causes a flare because of delayed symptoms.
thanks--

My understanding is that once Botox wears off the effects are gone. At least that's what happened to the people that I know who had it done. It was suggested for me too by a TOS surgeon but he said it was for diagnostic purposes and it doesn't last.

Right but maybe the gains you could make in pt would cause some improvement from stronger supportive muscles?

Well I know what you mean but I don't personally believe the muscles are such a big issue with TOS, the problem is the bone, either it's the abnormal first rib or cervical ribs, something is wrong there and that causes issues. Muscles will get irritated from poor blood supply or poor posture but the poor posture is caused by some defect in the bone structure. I hope this makes sense.

I do go numb in 'correct' postures, but I don't think there is a bone structure problem in my case

Botox helped. It allowed me to go through PT, which improved my stability, posture, and body mechanics. I received my botox in October 2013 and have been in PT since. Now I go once every 3 weeks. I have an appointment w/ Dr. Donahue again at the end for February and I will be getting my second round of botox.

Sorry about all the questions but I'd really appreciate as much as you can answer! Wondering if I'm too far gone at this point, or if there are similarities there might be reason to try botox again? How long did the botox last? Do your fingers go numb when you are in what is supposed to be better posture/are you able to hold objects without numbness/are you able to type? Have you had any vision problems or blood flow/discoloration/bruit/ from artery compression before/after botox? Have you gotten migraines?

What are your symptoms now vs what they were/what were the things you could do after the botox but not before/do you think you've improved enough to avoid surgery?

Thanks!

I had N+A TOS for 2 years before my first botox injections. Botox lasted maybe a couple months. I never got numbness/tingling from good posture, but rather from pushing my body past the tension point of the nerve. Dr. Donahue graded my arterial compression as moderate, so I have had vision problems, discoloration, bruit, tinnitus, vertigo, vomiting/gagging, migraines, etc. While the botox was working, it solved all the above as long as I didn't do anything.

What has had the most impact is PT to strengthen and stabilize my body. I started PT one month after injection and aggravated symptoms because the PT had to learn what my body could handle as far as stretching & strengthening went. After that things began to improve, as it was and is a long and slow process. At this point, it's been 14 months since I started PT. My PT says that I am the most functional TOS patient she has had yet. Maybe it's good luck- but I know that I am at least partially where I am because I refuse to give up, am willing to do or sacrifice ANYTHING to improve my quality of life, spend 12 hours or more a week exercising, and have a great PT.

I do think I have improved enough to avoid surgery.

I can lift weights/play basketball again, which I couldn't do prior to surgery. Exercise is mandatory for me. If I even miss a couple days in a row, symptoms will start creeping back.

Hope this helps.

Just to clarify- I meant botox, not surgery. I have not had any surgery for TOS.