being diagnosed with TOS
 

Hello, im new to this site, just came across it whilst i was researching about MRA's.....im gonna tell you a little about my problem and would love some feedback from anyone who has experience same or similar to me...

just over 3 years ago i was healthy and never had any probs with my arms....then i fell down the stairs and landed directly on my mid back and jolting my neck too.

about 6 months after this i developed pain in my right thumb - couple of months after this started, this nagging dull pain developed in my right shoulder blade....more symptoms slowly came after this (all on the right hand side) :

little finger is wobbly and feels like it doesnt belong to me - kinda numb feeling
fatigued arm - feeling heavy
coldness in shoulder blade and right hand - sometimes this can change to hot feeling, but more often cold!
some muscle wasteage in right hand
right hand changes in colour - nail beds can go really purple if i get a bit cold
neck is weak - feel like i cant support my head
cant look downwards for anylength of time as it hurts!
cant sit up unsupported for very long
right collar bone has protuded and feels very bony these days - it aches and pain shoots up towards my the front of my neck and jaw.

the list sometimes seems endless!

i left an office job because of the pain, im on my 3rd doctor now and have had x-rays, MRI's (with and without contrast), my pulse dimished on the adsons test, tender on lower C/upper T vertebrae, also doc pushed on something next to my windpipe which almost made me cry with pain!.

from what i've read i think i may have vascular form of TOS?....help please - im finding diagnosis very difficult!

Hi.

Depending on what state your in someone may be able to recommend a dr. who specialises in TOS. Did you ever have a EMG or Scep? they may be able to identify nerve troubles.

Hi, thanks for the reply!. I have had a EMG and nerve study - both normal. Now a new doctor im with is arranging a MRA for me. I live in the UK and there just dont seem to be many doctors here who specialise, or even believe in TOS!

While waiting for the MRA , start searching for some names of really good physical therapy people, body workers, therapeutic massage, myofascial release, osteopathic drs or chiropractors.

any or a mix of those will probable be what you need unless something specific {surgical} shows in the MRA. {all must be very good and knowledgeable about soft tissue problems and work with you - no cookie cutter rehab plan}

The collar bone thing sounds almost like a severe dislocation/subluxation of some sort.
could you be hypermobile?

Useful info-
http://neurotalk.psychcentral.com/thread84.html
post #1 has hypermobile info link in it.

dr & PTs listings-
http://neurotalk.psychcentral.com/thread135.html

thanks jo, i have seen 2 PT's and it was the 2nd one i saw who first mentioned TOS....the exercises seemed to help, but they became painful a few months into the programme.

My current dr agrees that my collar bone is a little bony and is protruding slightly, but says that this can happen as we get older - but im only 26!!. I read that it can be related to TOS as it can spread over to the chest wall and cause the collarbone to slip when the muscles that hold it up become fatigued?. Ive not heard about the hypermobilised thing you mentioned?

i've just become very fed up with it all over the last few years and dont think that im ever going to receive a TOS diagnosis and be treated correctly - the dr's here in the UK just dont seem to specialise...or even believe in TOS!

Hello Tracey & welcome!
Sounds like TOS for sure- and given your Adson test, I feel like despite your other test results, they really have to look at TOS as a resonable suspect!!!

Glad you found yourself here :) This board is full of info you can use! Perhaps there's some UK members here you can talk with for info too.

Hello Tracey, I'm so pleased to meet you.

I'm so glad you've found your way to this forum, but if there's anything the rest of us can do, please don't hesitate to ask.

Hi, yeah im going to have a look through and see if i can find any UK members as it could be useful for comparing dr's etc....however, this seems like a good place to get (and give!) support - which i think is really important with TOS as its really hard for anyone who doesnt have it to appreciate your pain!.

Im convinced that it is TOS too - i have had dr's make me feel like its all in my head!....i know its not and have found a dr who seems to have more of an understanding of TOS - fingers crossed something shows on the MRA!.

Hello! many thanks for your kind welcome! Seems like a very supportive community here, im suprised at how many other people have TOS - it can be a very lonely condition!. Im from the UK so hoping to find some fellow UK members once i've looked around!

Dear Tracy,

I hardly ever post, and hardly ever peek in, due to high pain, but I couldn't pass over your post.

Your symptoms came on VERY simlarly to mine, except I didn't have a specific fall, I just had hours on a computer, working files and doing administrative work.

Now, despite your "fall" that you describe, your job duties could have caused TOS or exacerbated what might of just healed, so you MUST, MUST see a work comp attorney and talk to someone FOR FREE about UPPER EXTREMITY REPETITIVE INJURY TO YOUR right arm or wherever it is. Why? Because this can be a lifelong injury that needs permanent, temporary disabilility, medical help, I even had daily nurse. And USUALLY this is a work caused injury unless you have a specific rib poking the nerves, veins, etc. You'll learn all of the specifics, but just don't throw out a possible case despite having quit in ignorance of your rights.

I was a work comp defense attorney, I know that most states will sustain a case despite having quit in ignorance of your rights given the correct factual legal and medical pattern. Only an attorney (or two) will be able to tell you ifyou have this.

Next, I'll post what took me a long time to learn about testing for TOS. I think you might have neurogenic TOS and vascular TOS a little "off", but then, most docs don't know it after med school! (Vascular is a seen vein blockage while neuro describes the rest, pretty much, is an easy explanation without going into ALL of the particulars.)

God bless you.