new to site
 

I was injured in 1991. A car hoist came down and broke my right shoulder, clavical. I have had 8 surgerys. Two of them were bone grafts from my hips. I spent 5-6 years in either a uper body cast or airplane brace. My last surgery was in 1998. I have lived with cronic pain from the start, as i am geting older other med prolbem are acuring, i was just rx with tos.:(

intro's...
 

my name is michelle, i am 33, and diagnosed in 2005 when i was 27. i have bi-lateral neuropathic tos, due to repetitive motions at work. i settled my work comp case in 2006, no where near to being healed. i started to work again in 2007, after my second round of pt. i sit at a desk and am on a computer for 8 hours a day. everything i ergonomically perfect at my desk. i am not as bad as when it first happened ( i couldnt even lay down flat w/out screaming), but my meds have continuosly increased over the last 4 years. i am not doing any outside activities anymore because everything causes a flare up now. so....i am having surgery in two weeks - 1st rib resection on left side.
i know it is a shot in the dark, but my next option is the phyntenol patch. i'm hoping i can keep working, even though i know this is causing me not to heal. perhaps while i am out on disability for the surgery i will change my mind about being permanetly disabled.

Glad I found this forum!
 

Hi
My name is Diane. I live in Seattle. Been struggling for the last year and a half or so.

Started out with frozen shoulder - eventually ended up with a physiatrist who worked me up and have received a diagnosis of bilateral TOS as well as C5-6 stenosis and bulging discs.

Saw a well-respected vascular surgeon here on the Eastside of Seattle who recommends the axillary surgery. I had about 8 weeks of PT which didn't do anything; however a scalene block did give me about 80% relief. He says this indicates I would probably do well with surgery.

Not sure I'm sold, as my neck/arm/shoulder pain also completely relieved with a C5-6 epidural steroid injection - lasted for 6 weeks. Leads me to think that a cervical foraminotomy may be the best option.

I've never had chronic pain before and this is wearing me down. I work 8-10 hours per day as a medical transcriptionist and this sure makes it hard to my job.

Would like some advice on the TOS surgery. I'm willing to give it a try if it will give me some relief. I feel confident in the surgeon. If you want his name, private message me. I'm getting a repeat scalene block this week to run that test again. My diagnosis is "true neurogenic TOS". He wants to go in under the armpit.

thanks for any advice and look forward to hearing from some new TOS friends!
Diane

Regarding the ergo- I sit in a reclined position (unfortunately not the best for lumbar support) and have my right arm in a long arm splint while working, resting on the keyboard (with scroll-type mouse on keyboard), when I type I do have to sit up but the reclined position decreases the pain- it takes all of the stress off the scalenes and head is supported on back of chair-a special chair that stays reclined with lumbar support is needed but since it is too $$$ I make the chair I have work. This may help you too.

3 weeks post op cervicle/1st rib resected
 

scared scared scared... part of me wishes i never had this operation, i was sent home the day after surgery no xray done no pain killers given the pain felt as if i was being stabbed in the chest,couldnt breathe or relax nothing, the next day i was back in hospital with a lung infection they kept me in for 5 days now i am at home breathing getting there just cant get rid of this scared feeling i am not sure if i was supposed to post this on here guess i just needed to voice how i feel right now,,feel kinda silly troubling a bunch of strangers no disrespect just need someone to talk to you know, am i supposed to feel so stiff and numb will it get easier xx

new here
 

Afternoon all- 25 y/o female from Tucson, AZ here. Was previously "softly" DX'd with TOS (venous and/or Arterial) in '08- had to stop all work up due to relocating and a subsequent divorce. I am now remarried and moved to Tucson AZ, where the medical hunt has begun again. Recently saw a vascular doc in town- and said without a doubt that it is TOS- again, either Venus or arterial, or both. Having a doppler on Wed first thing am and compare those results to the doppler from '08. Can't imagine it will be good, considering my symptoms have gotten considerably worse in the last 2.5 years! Which leads me to my symptoms- which seemed to perplex some Drs along the way:
My left arm- from finger tips to right above the elbow- turns a deep red/maroon color that lasts anywhere from 3-10 seconds. Sensation/temp change is also associated with the color change, as well as swelling of hand/wrist/fingers. After some "shaking" out of the hand and arm, the color will return to normal. I also have noticed with greater frequency that my veins from right above the left pec/chest area across my left shoulder and down my arm- those veins have become more and more noticeable in conjunction with my hand/arm turning red, swelling, temp change, ect.
I know that many people describe a high incidence of pain in the affected limb- I suppose I may be a lucky one, or else I have had symptoms so long that I have become very tolerant of it. I DO however, have what I can best describe as a "Tourniquet" feeling around my left bicep/triceps area. It can begin in the middle of the night, it can have an onset while I'm in the car, at any time really. The pain can last from half an hour to an entire day! Not taking any pain meds, just Advil prn. My left arm- which the measurements are fairly the same to my dominant right hand in terms of muscle tone, gets heavy and tired easily- and becomes almost a dead weight after use of simple tasks- like blow-drying my hair!

My symptoms began in late 07/early 08. Started a small TOS workup that quickly ended for the reasons stated above. The most notable test that I did complete, however was the doppler that CLEARLY showed a complete lack of pulse in left hand associated with TOS maneuvers/positions. Also, had xrays done- negative for cervical rib. Had a Neuro workup- Neg EMG/NCS, neg ulnar nerve damage, neg brain MRI, ect.
Back then, symptoms came around 2-3times a week- so it is was fairly easy to not get too concerned.

NOW- I have returning symptoms every single day anywhere from 3-4 times a day, up to lasting an entire day or weekend (as happened once or twice) where symptoms were coming and going constantly- THAT is when I got worried and have been back in the medical hunt since! Also, I should note- my right arm/hand has been exhibiting the same behavior as my "early" symptoms of my left hand back in 07/08. Time to get on the ball...

My question, does anyone here also have their arm/hand turn RED instead of what is characteristically described as blue or pale white???

Thank you to the forum- It is a relief to know that I am not alone in all of this.


Jocelyn

Edelweis
 

Hey Edelweis, i've been battling the TOS syptoms for 2 years, can't get anyone to say for sure or not if it is TOS. my symptoms are tingling in the arms shoulders fingers with severe neck pain at times, tightness around the arm pits and chest area, at times same symptoms as a heart attack, several stress tests done, ekg's and nothing comes back negative. how about your symptoms... fill me in. new to this site, hungrey for fellow tos info..
thank

help, new member searching for info into TOS
having alot of the symptoms most of you have mentioned
2 years into this stuff.
fill me in with any info

thanks

newbie
 

I'm 40, newly diagnosed with TOS by Dr. Hugh Gelabert at UCLA. I developed TOS through a variety of factors, mainly chest breathing, lots of stress/tension, and having to overcompensate for having a short arm cast on my right (dominant) hand for 6 weeks (plus not being able to use it 100% afterwards as I was going through therapy). My TOS is bilateral, left is worse. MRA shows greater than 90% subclavian artery blockage in arms raised position. There is also some blockage on right side. I do not have an extra rib.

So my course of therapy is to start with PT for 4-6 weeks. Dr. Gelabert mentioned the scalene blocks but I'll hold off on that for now. I've also taken about 10 Alexander Technique lessons and will continue with that as it's helped me to become more aware of the subconscious tension in my body.

To complicate all this, prior to TOS diagnosis, I was diagnosed with bilateral cubital tunnel; however, it could all be from TOS. I literally was ready to go under the knife at my elbow when TOS was thrown into the mix.

Anyhow, this is a great site and very insightful for all of us going through this "journey."

Welcome all.

Just wanted to mention that sometimes the posts in this section get overlooked as they get bumped back in history due to the main TOS threads being more active, so it's good to make a new thread to say hello also.

TOS forum new thread link-
http://neurotalk.psychcentral.com/im.../newthread.gif