NeuroTalk Support Groups - New member saying hello

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - New member saying hello (https://www.neurotalk.org/thoracic-outlet-syndrome/15195-saying-hello.html)

New member saying hello

Hello, everyone. I have thoracic outlet syndrome, and I am new to this group. I am not too sure what to say, but I am grateful to have found this site, and to meet other people who have thoracic outlet syndrome. Thank you all for being here.:)

I decided to post a little more about myself. I first had severe hand pain in 1989 (that was also my first diagnosis from a doctor: severe hand pain). I ended up leaving my job and going back to college. I have been able to get through using Dragon voice dictation software. I started my new job in 1996, and have reduced my hours there two years ago. I was diagnosed with thoracic outlet syndrome a few years ago. My doctor referred me to a surgeon, who noted that my pulse dropped down to zero when he raised my left arm to a certain position. He said it was a very strong response to the test("very impressive"). While the pain is greater on my left side, it is bilateral. The surgeon recommended surgery, but my doctor has recommended against surgery. I have been getting by with help from my partner, massage therapy, seeing a trainer at the gym who works with people who have limitations, and some diet and supplements that help me. I feel fortunate after having read some other people's experiences, but still have trouble with other's reactions, especially at 12 step meetings I attend, to the fact that I look fine, but I'm so physically limited. I cannot move folding chairs, or lift very much at all. I don't get groceries or do laundry, and at restaurants sometimes I ask for a plastic cup if they have any classes. Just sitting down, especially in a chair without adequate support, worsens my pain. So, my latest goal is to keep taking care of myself and let go of other people's reactions to me. Well, thank you for listening to me. A question: when do people generally meet in the chat room here?

Hi Steve,
We were meeting in chat quite regular for awhile - usually 7pm pacific time.
but we have been a bit more hit and miss lately.
it might have been taking a toll on us and we just needed to take a break.

or maybe I just missed them - cause my computer was messed up for the last 2 weeks- LOL - I've been working on it for the most part lately.

Nice to meet you - I just posted on towelhorse's thread about some simple things that i do for relief- maybe some of those will help you too.

Hi Steve and welcome to the forum! While I haven't had any surgery for TOS and don't plan to, and haven't seen any of the specialists or had any of the tests they require, I have had numerous MRIs, CT scans, and EMG/NCVs and seen too many drs. to remember, from orthos to thoracic surgeons and so on. I've been dealing with TOS and neck pain,etc. for over 25 yrs. Over the years it's gotten progressively worse, but I've been able to mostly control mine with the help of a good neurologist and PM dr. and medication, chiro, massage,etc. My PM dr. and every other dr. I've seen have all recommended against the surgery- in fact, the PM dr. told me to "absolutely NOT" ever have the surgery unless it was an emergency like a blood clot. All of us here have some kind of limitations- some more than others, so we know what you're going through. And we've all had to deal with people thinking that we "look" perfectly healthy so we must be:( ....It sounds like you've got the right idea about that- what others think about you isn't important. I'm sure there will others along here to offer you some advice and who know more about all the tests and treatments that you might want to consider.

Welcome to the forum family!
You had mentioned your need for support and unsympathetic people there are a few items that may help you that same of us use.
A sling on the worse arm going out, so people don't slam doors into you that you can not manage, so they don't bump into the arms and body; also a pillow for the lap, a bed pillow with a dark pillow case to rest your arms on...then they have to get the hint. If people ask, we use to say it is like having carpal tunnel of the upper body, nerve compression injury.

Depending where you are as Jo said 7:00 PM pacific time or 10:00 PM eastern time. Some nights a full house, and others hit and miss.But it will be real nice to meet you there.
Di

Welcome to our TOS family..
I hope to meet you in chat one evening...
:welcome_sign: Dawn

i did some searches and here's some of our threads on PT and other therapies- I mentioned the wrong thread in my earlier post.

http://neurotalk.psychcentral.com/sh...=Sharon+butler
http://neurotalk.psychcentral.com/sh...=Sharon+butler
http://neurotalk.psychcentral.com/sh...=Sharon+butler

botox & injection thread-
http://neurotalk.psychcentral.com/sh...hlight=therapy

muscle spasms thread-
http://neurotalk.psychcentral.com/sh...hlight=therapy