TOS chronic and long term?
 

Might sound like a stupid question- but I'm dealing with some real characters in the military medical system. Since TOS (any form of it) is so misunderstood or plain NOT understood at all- I am having a difficult time trying to get the docs here to understand that TOS is chronic, and there are long term effects/treatments needed, sometimes even additional surgeries down the road. Could you help me find information on these accounts so that I can print them out and forward them to the docs- they are holding up some very important paperwork because of this. Anything like statistics, concrete information.

For the record, I have had two successful surgeries; one on each side for A and V TOS. But the docs seem to think "you've had surgery, you're cured- go home." And thats just not the case!

Your help is much appreciated!
Cheers!

What kind of surgery did you have?

Sometimes that seems to be the case. What do you mean by successful? Do you still have problems now?

What sx are you having now?

Surgery may fix the "main" issue, if it all went well and recovery went well..

But often there is internal scar tissue or adhesions... even if "cleaned out " by surgeon, it can come back..

Often there will be chronic myofascial issues and/or ongoing triggerpoints.

Off hand I don't know where you would find documented studies or articles, perhaps some of the top tos docs websites?? or pubmed articles..

I had 1st rib resections and scalenectomies on the left and right side via transax (arm pit.) The surgeries were successful, I no longer have nearly the symptoms that I once did. However, I still have swelling and color change on occasion. Now I have been moved to an area where vascular/CT surgeons have no clue about TOS, and even if I needed surgery for trauma, scar tissue, rib growing back- whatever, no one around here would know how to do it!! They've never seen a patient in person with it before, let alone a patient who already had two TOS surgeries! There isn't anyone up here to monitor my care, and I haven't been able to get into have a vascular study done to make sure that the last surgery (done in Aug) was successful anatomically (although I feel relief.) Since the doctors up here don't know anything about TOS (openly tell me they google the condition before I came in for appointments) they feel like since I've had surgery that I'm healed. But I have questions! I have to have a vascular study done, they don't even know how to order the damn test! Let alone interpret the results, let alone "deal" with it if the results indicate another surgery. :( I a so beyond frustrated its not even funny.

I'd suggest trying to contact one of the top TOS doctors offices. They might be willing to contact your doctors to share some information. You might be able to talk with the office manager who can rely the message with your doctor(s) contact information to the doctor(s).

I don't have any symptoms remaining after my TOS surgeries but have run into similar experiences where doctors don't know much about TOS. I had a major wrist/forearm surgery earlier this year and the anesthesiologist was literally jumping up and down in excitement that he actually met someone who had the surgery as he'd heard in medical school that it is extremely rare and unlikely that he'd run into someone with it. He could have handled the situation with a bit more composure.

Where are you?

I'm in NE.

Yes, see the thing is too- what if I fall and dislocate my shoulder- they'd send me to PT, right? But the PT doesn't know anything about TOS, so I could very well be "healing my shoulder" but also strengthening/tightening all the wrong muscles and tendons in the TO.

What if I get into a car accident and have whiplash and the seat belt crammed into my TO/brachial plexus? Who's up here to take care of that? To diagnose it? And fix it, or recommend treatment?

These are very simple examples of all very real possibilities. I'm not a negative person, I don't think that these thing "will happen to me" and now I'm paranoid about it. I just think that these scenarios are def feasible, and theres not one person out here who would know what to do unless I directly told them. And what MD/DO likes to be told what to do from a non-medschooler doc? Never met one, doubt they exist.

Not to mention is something serious happened (a serious injury, or even breaking a few top ribs or the collar bone lets say) who's going to recognize that it could be a very real issue to people with TOS????