[diane54]

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

[joanne1971]

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

[josepentia]

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

[Smileymichelle]

I am a 36 y/o female diagnosed with TOS on my right side a couple months ago. I'm not sure of the cause but it's probably related to past MVA. My right side is in constant mild to moderate pain. I take gabapentin which helps somewhat. My spine doc recently told me unless I want surgery my only options are drugs or Botox. PT isn't helping much. I am looking for other options. I don't want o be in pain/on drugs the rest of my life.

[MarcS]

My name is Marc, 21 years old, Denmark - been suffering for 3 years, from what doctors now believe is neurogenic TOS. I first started being diagnosed with bilateral tennis elbow, but that diagnose quickly feel to the ground after doppler ultrasound, second opinion from a rheumatologist rheumat and x-rays.
Then the diagnosed went upon bilateral radial tunnel syndrome, but that eventually also fell to the ground.

My pain is primary in my elbows, and that is where it started, right beside the epicondyle, in the supinator muscle and it is very sore. I then started having pins and needles in my hands and electrical shocks up my arm. I have very bad posture and have also lost the natural curve in my neck.


Then i had a nerve conduction test made by a very experienced (45 years) Neurologist, who concluded bilateral pinched nerves in the thorax propably in the plexus brachiallis, furthermore he ruled out carpal tunnel and radial tunnel.

Now after 3 rheumatologists, 1 neurologist, 2 nerve conduction tests and endless anti-inflammatory gels and acupuncture i think i finally have a diagnose. TOS

[ladylaura418]

Hi all,

I am comforted and relieved to find this support forum. It's disheartening and frustrating to feel weakness and in pain every day, and no one can see why it hurts. I'm a 24 year old female.

Anyway, I believe I developed TOS from repetitive strain at work. I used to work in a mental health facility, where we had to restrain teenage girls multiple times a day. Last January and February, our restraints increased to over 40 in the month, and it was at the end of February that I started to notice my symptoms.

Fast forward to September 2011, and I feel like I've been around the doctor block. I'm fortunate to live in Boston, MA, where we have so many great doctors and medical institutions. I've been to my PCP, a physiatrist, an OT, a vascular surgeon, a neurologist, and a thoracic surgeon. After these folks and lots of tests, a diagnosis is still inconclusive:

• Xray - no extra rib
• EMG - no abnormalities
• nerve conduction study - no abnormalities
• PT- my strength decreased by two thirds in five weeks, so it was not helpful
• CT scan - no abnormalities
• vascular study - the only test that indicated loss of circulation

I'm now awaiting to hear about Botox injections into four muscles (two on either side). MGH's Dr. Donohue is working to get clearance from my insurance company.

In the meantime, I continue to have daily struggles. My pain and weakness are sporadic, and there are now two days alike.

• • When hands/arms are in a raised position, hands become pale and appear to have lack of blood flow
  • Weakness in grip and strength
  • Aching in hands and arms (feel “limp”)
  • chest pain
  • elbow pain on both sides (more often left side) in the notch between the two bones on the inside of the elbow
  • “odd” sensations in pinky and ring fingers on my left side (burning, tingling)
  • Pain where collarbone meets shoulder
  • Tension and tightness in neck and shoulders (frequent)
  • Swelling of hands – veins “pop” out (a few times a day)
  • Overall loss of weight and sometimes lack of appetite

Glad to find everyone here.

Take care.


**placed a copy of your post on the main TOS page here-
http://neurotalk.psychcentral.com/sh...055#post810055

[chroma]

@LadyLaura418, We have a lot of overlap in our symptoms and I've made some progress, so I thought I'd comment:

The #1 thing that helped me was elevating the arm on the symptomatic for the purpose of lifting up the collar bone/shoulder girdle in order to open up the space underneath it, to reduce compression.

In other words, if TOS involves compression under the clavicle, then raise the clavicle. I found out later from literature than some people were already doing this as part of testing for TOS. I used it for relief. :-)

I do this elevation when watching TV, reading and driving (it's my left arm so I just prop it on the door). When I walk, I don't let the arm hang down, but prop it on a hip, a top of a pocket or in a pocket. When working at the computer, I have books on the left side so I can prop it periodically.

The huge reduction in symptoms was further confirmation that I had TOS.

Here are other things that helped:

http://neurotalk.psychcentral.com/post802248-72.html

Good luck.

[lexy0819]

Hi Everyone,

I was formally diagnosed with TOS about 3 months ago but its been an ongoing run around for the past 5 years. 5 years ago I started to notice some tightness in my shoulder and feeling of a rubberband just wrapped around the upper part of my right arm. Then the swelling came along and all my clothes started to fit differently. I was working in the therapy department of a skilled nursing facility at the time and talked to one of the PT's about it. She checked it out and recommened I go see an ortho surgeon. After 2 months of rehab, MRI's and CT scans the doctor was just lost on what to do. Then he gave me the scare of a lifetime when he referred me to a breast specialist in thoughts of breast cancer. She blammed it all on the underwires of my bra and told me to get rid of them and move on with it because nothing was wrong with me. I was 19 then. Here I am at 24 and in a month I'm having surgery to have my first rib removed on my right side. The pain and swelling has progressively gotten worse over the past year. If it wouldn't of been for my new ortho surgeron and the PT he sent me to- we would of never got to this point- even thou the ortho told me from the beginning when I first went to him 6 months ago that this is what he thought it was- he wanted to do eliminate all other possibilities but we weren't giving up until we knew what it was. All x-rays and scans were normal, MRI showed no problems, Nuero said all muscles were functioning well, but the pain in my clavical area was unusal and swelling was something they couldn't explain. Then the thoracic surgeon dx me. I put the surgery off because I was in the midst of planning my wedding and couldn't move the date- but now its far worse than it was. I have knots all through my arm and can't remember the last night of sleep I had. Doing my hair in the morning is a pain and my passion for drawing and painting is just an after thought because I can't hold a brush like I used to due to the numbness.

Just looking for reliefe and anyone who can relate because its like the world just thinks I'm crazy....

[ladylaura418]

Hi Chroma,

Thank you for your advice. I will certainly try to think of ways at which I can open the thoracic cavity when I'm going about my daily tasks.

I appreciate your thoughts and advice!

[reddragons]

Hi,

I had bilateral venous occlusion in both axillary veins. My symptoms first appeared when lifting weights. My L arm was affected first in 2006. My R arm jumped on board in 2008. Up until my R arm was affected I was on coumadin for 9 months due to failure of a venogram in my L arm. Once my R arm became occluded (originally was being treated at the VA), I was sent to the Cleveland Clinic. A few venogram failures later on my R arm and I was running out of options. I had my 1st rib resected on my R arm in January of 2009 followed up by successful venoplasty! I have had zero issues with my R arm since! L arm... I had 1st rib resected in January of 2010, followed by unsuccessful venoplasty. I have developed some sever scar tissue restrictions. Over all I have pretty good drainage, due to extreme collateral flow, and other then intermiten numbness and tingling. Problem- I was love to lift weights and exercise and most of my issues are exercise induced. My vascular surgeon told me to keep hitting the weights and exercising, since forcing blood through, will over time increase the collateral flow and possibly get to a normal level. I kind of doubt it, but I want to believe it since that what I like to do. Over the past 4 weeks or so I have noticed some increased swelling in my hand and redness. Also, my L arm, shoulder, and axillary area, is somewhat bigger than my R side. The scar tissue I can tell is getting worse, and I am just trying to figure out what my options are both short term and long term complications. Thanks