I had been told NOT to do any exercises but now am going to do some gentle glides and movements. MRI has shown that muscles are thinning due to lack of use. Would love some suggestions. Thanks

Linda

LJ
Seriously?
Being with Peter Edgelows exercise protocol
You can purchase without being seen by doc and not pricey for what u get
I have been doing them since 2004 and has helped me graduate to PT
But thats ME not anyone else who doesnt respond

Took me 6 months to get into it and 1 month to actually feel like it was doing something

Also Sharon Butlers TOS & RSI programs from her website or her book.
www.selfcare4rsi.com

Simple and gentle stretches, plus lots of info on fascia.

Honestly, I have had such mixed responses from doctors about what to do. Either Pt or not. We are going to start very lightly because otherwise I will go crazy. I appreciate the support.

Edgelow protocal is not traditional PT. The patient is in control; it is not hands on. It is not the kind of PT that TOS knowledgable drs would have you avoid unless you have complications unusual for TOS. In the PT pgm you learn to see if you can reverse some symptoms he has you address like temp and strength. And of course as a good patient you must know not to go into the pain. You can read in Sharon B's materials and in Edgelow's how to recognize the point at which to back off. At a minimum you would most likely be able to do the thinker pose and some of the breathing pgm. Neither of these pgms have you do weights or anything that many of us TOSers either can't do or find causes flare.

the above refers to patients who haven't had surgery. i have made efforts to do both prgms but prior to surgery. i think if you are recovering fr surgery you really need to follow a protocol developed for that.

When my doctor finally allowed me to begin PT one month after my surgery I saw a Physical Therapist who was great (I had to search long and hard to find someone in my area who had experiance with TOS) and consulted with an amazing trainer who had rehabed professional athletes with TOS.

The goals given to me were: regain equal strength in my upper body (since I had been compinsating with my left side for a month after surgery) AND do excersises so this wouldnt ever happen to my left side as well. Here is where it got tricky, they think that being overly muscular due to the sports I do, is what may have contibuted to me getting TOS in the first place, so I had to be very careful not to build any extra unneeded muscule in the upper front shoulder area and in the pec muscles, so excersises like push-ups are not an option for me, ever.

In a nut shell, I was given lots of excersises to build up my upper back muscles to improve posture to keep the shoulders back and the Thoracic Outlet area open. It was a lot of hard tedious work, but it paid off and I am nearly back to normal. I would suggest seeing a Physical Therapist who could show you the exact excersises that would work best for you.

If you go the PT route it really is important to find a very smart one that will guide you and listen to you also. So if something isn't helping or is making you hurt worse they will make adjustments to the program to be best for you.

Linda,
I'm kind of surprised your drs told you not to do any exercises, did they ever clarify why?
I'm wondering if they meant mainly not to weight lift as opposed to stretching and ROM type stuff??

and whether someone has had TOS surgery or not -

i think it is really important to keep in mind here that there is a HUGE difference between those of us who have vascular TOS (i.e., arterial or veinous), versus those suffering primarily from neurogenic TOS, in terms of what we can handle physically and how well each of us can expect to recover in rehab.

don't want to sound all "doom and gloom" here, by any means - i'm just saying that if your case has a big neurogenic aspect to it... caution really is the order of the day.

very, very few PT's understand what to do with neurogenic TOS'ers. it is a much different picture if you are recovering from vascular TOS... your prognosis is way better and you can do far more without the delayed flare-up reaction that some of us others get, from the most basic of "exercises." our neurovascular systems are in a constant state of hyperexcitation to begin with - which is why the constant muscle spasm in so many cases.

edgelow and butler have worked hard to come up with TOS protocols for that reason. suparna is another one (can't recall her co-author's name precisely, think maybe it's jack bellamy?). paula ashbaugh in denver has a post rib-resection TOS protocol that she's been generous in the past about faxing... her contact info is up in the DR's and PT sticky.

this is very tricky stuff and must be undertaken with proper guidance, awareness, education - all of that good stuff. and patience (not something TOS'ers are known for-) i find that extremely hard to come by in a "normal" PT facility, and i live in a major metropolital area. but i have true neurogenic TOS. i do think it's another story if your case is vascular, and even if it's neuro or mixed... perhaps if you're in better shape and have a timely dx and the very good fortune of finding someone most excellent who DOES know what they are doing in a PT facility... you'll be OK there. this has not been my experience over the years, is all i am saying.

'shake and bake' PT can be one of the most discouraging, not to mention downright destructive aspects of a tx plan gone wrong for a neuro TOS'er!!! so if you do choose to go to a professional PT'er, make damned sure they at least know who sharon butler and peter edgelow are. ideally, an open-minded PT would be willing to implement one of these excellent TOS protocols, or at the minimum, take and use suggestions from each of their programs that the two of you find in the process work well for YOU. for YOUR case of TOS.

because in the end, each case of TOS - whether it's neuro, vascular, or neurovascular - presents so very differently. part of the controversy and part of the challenge in tx is to find out what works and what doesn't, without becoming someone's guinea pig or being labelled "exercise intolerant," when the proper protocol hasn't been considered from the get-go.

i'm getting dizzy and so had better get off of that soapbox now...

lots of luck to everyone - and don't forget to breathe!

alison
"Be Brave"

The problem I found when I was sent to PT was that I had told the therapist I had had disc replacement. I then was diagnosed with TOS and had rib-resection and scalanectomy with recurring TOS (sorry spelling today is way off). She decided that, no, she was going to treat me for a disc problem. She had me doing stretches and lifting. I can hear you all cringing through your computers. I, therefore, did not go back. That is when Dr. Togut told me not to go back. He said NO PT. After This MRI, which my neuro will send to Dr. Togut, I'm hoping we can come up with SOMETHING to do with me. I'm tired of just taking percocet. Oh, I have been taking topomax which I have to say I think is helping. I have slowly been increasing and I feel is helping. The pain is not as intense. I don't feel like crying as often.

Linda,
You may have posted this info already - but if you would describe your main or most bothersome sx maybe we can suggest something to help if it matches what we have had and had luck resolving.