What's wrong?
 

I'm newly diagnosed with TOS after a long, fun-filled journey as a "medical mystery". I've been lurking here for a while and wanted to thank you all for sharing your knowledge and stories. It has meant a lot to me to know I'm not alone in dealing with this stupid condition.

A little background info: I injured myself 3 years ago in a power yoga class. Had intermittent neck and shoulder pain with a tingling pain in my arm for a year and when the chiropractor didn't help, I got an MRI and EMG and they sent me to pain management and physical therapy. After cortisone shots, PT, and a nerve lesioning failed to stop the pain from escalating, I made the round of specialists to try to figure out what was happening. Finally I got referred to Dr Donahue at MGH and hallelujah, he confirmed it. I have a Botox shot scheduled for Tuesday but am not very hopeful that it will help. The pain has gotten so debilitating that, even with narcotic painkillers and muscle relaxants, I can't stand or walk with my arm in a sling for more than 15-30 min and can't lift or carry anything.

As a stay at home mom of a 4- and 7 year old, it's been a difficult summer but the beginning of school has me facing a new challenge. What do I tell people is wrong with me? It's hard for me to explain this tongue twister condition to people who saw me 3 months ago when I was still somewhat able to pass as healthy. TOS means nothing to them, brachial plexus needs an anatomy lesson, pinched nerve doesn't seem to convey the impact.

How do you explain your condition to casual friends and acquaintances?

Welcome JulieJem. :Wave-Hello:

Someone will be along to help.

Many years ago we had another member that was injured in a yoga session..and got TOS from it.

For explaining it, I usually would say it's a chronic neck/shoulder injury to casual acquaintances, and give more info to close friends if they ask..

Julie, please take a look at the InterX stuff i posted in another thread

http://www.interxtherapycenter.com/i...ving-with-rsd/

Its not a magic fix and temporary but works in kicking out TOS for a few months to weeks.

I think you're over-anticipating here. With TOS, you just have to try stuff and in all honesty you almost never know what's going to help or hurt ahead of time, let alone by how much. I try to be "neutral" when I'm going to try things.

I tried this early on:

"I have thoracic outlet syndrome which is neurovascular compression between the base of the neck and shoulder. This causes severe pain, numbness, muscle spasms and occasionally dizziness."

BWAHAHAHA! Eyes would just glaze over.

These days, if it's a stranger, I just say that I have problems with my neck and shoulder, usually while grabbing my neck and making a pain face. If it's a friend or relative, I give them the full explanation, but I take it slower.

Just tell them you have a nerve condition in your shoulder that affects everything up and down the line. If they ask, "Like a pinched nerve?" answer, "sort of, only bigger and more complicated."

Works for me. Most people don't listen past "nerve condition", or more commonly I'll even say "nerve thing", because they don't really care what it is as long as it isn't something contagious.

If I say thoracic outlet syndrome people don't know, and don't really care, what I'm talking about. I have chronic back pain as well, so I just say three failed surgeries on my lower back and neck. People seem to understand that.

Welcome Julie, My TOS also started with a yoga injury. Not even a power yoga, just a gentle plow. I dont try to explain it to casual acquaintances, sometimes I say "repetitve strain injury" or just "neck and shoulder issues"

Someone said they describe it like being carpel tunnel, of the whole arm.

Wearing a neck brace while grocery shopping or doing othe errand running when I feel like crap is a good tool, or carpel tunnel splints whichever. People are more helpful, more likely to hold a door, bag my groceries lightly or not give me a dirty look when I ask them to bag my groceries lightly. Or wonder why I make my kid load all the groceries in the car by herself, while I just get in and sit there.

Welcome JulieJem! First of all I'm sorry you are having to deal with this:( I know how difficult and frustrating this condition is. I have two little munchkins as well which definitely adds to the difficulty of trying to maintain a stress free relaxed state. My two year old is probably close to 34lbs and its a nightmare when he decides to sit in the middle of the store and refuses to move.
I'm curious to know how your botox shots went? Did they just do your anterior scalene. My Dr did my pec minor and anterior scalene and unfortunately it didn't do much for me. I'm hopeful that you will have a better result..