So I've gone undiagnosed for about 7 years. I think I might have TOS though in the past I've been told I don't. When a pain management doc did an emg and nerve conduction study he ruled it out so he said.

Recently it's come back to my attention, my physical therapist suggested looking into TOS so I've been reading. Turns out a emg and nerve conduction study alone can't rule it out.

I respond to the tension tests I believe though I've never had a doc perform them on me and my physical therapist doesn't feel she's qualified to diagnose me. My primary doc says he doesn't know them.

I've just done a mri of the brachial plexus will have results next week. Also I'm considering doing a mra I was told by the tec to order a Sub clavian/axillary mra. I'm gonna pay for this one out of pocket unless my mri shows something cause my doc will likely not order more tests unless something shows up.

I'm gonna try to see a neurosurgeon for an eval if I can get my request approved though he's booked out 3 months. Ben waiting on a second neurologist will see him in a month. My first neurologist did suggest "non surgical tos" as a possibility.

I have extreme difficulty with my hands, writing/typing. Tension in them causes pain in my upper body, pecks upper back shoulder/arm. Began from repetitive use. Working in a kitchen and writing.

Any ideas on how to proceed. Who to see? How to get a diagnosis? I'm located in Oregon.

I am beginning think there is a thing such as Pre TOS, means you won't have any results from testing to prove it is TOS yet, but if you ignore and keep working and doing same things it will most likely become full blown TOS..
I suggest avoiding that scenario.


We have sticky threads up above the main TOS thread list - drs & PTs , trigger point info, and mega info in the useful links sticky..
http://neurotalk.psychcentral.com/forum24.html

check those out to learn as much as you can ..

It's interesting you say that. Actually my more obvious and extreme signs were in the beginning. I was in prison at the time working in a kitchen emptying trays as I collected them from a window when it came on gradually then all the sudden.

My symptoms were a little more extreme then. Week grip, some hand discoloration and the problems with my grip and it aggravating my upper body pain. As I came out of it I never fully recovered. Tiny things would set me back.

When I finally saw a specialist I had a slight week grip but no other obvious signs because I'd mostly recovered our at least standardized. Little things were no longer setting me back. That's why I'm hoping that scar tissue and imaging the brachial plexus could show something from the past and why I'm looking to do more imaging.

I've always treated it like a repetitive strain injury because laying off is the only thing I seem to respond to. I've adjusted my life accordingly and it keeps the pain down to a manageable level and keeps me semi-functional.

There are a couple of dr's in Seattle on the list. My insurance probably won't send me out of state without a diagnosis so I'd be on my own financially. They're are surgeons and physiotherapists on the list in Seattle. I assume I should start with a physiotherapist first?

It might help you to narrow it down a bit, have you read about the vascular types (artery or vein) vs the nerve type , and which seems to fit more for you?
and there is disputed TOS , which can be a mix of both and often more of a chronic RSI related type..

I don't know how badly you are affected in day to day living, or what if any pain level you have on an average day...

I'm not sure if you really need or want a diagnosis, or would prefer to find the best treatment you can find.
For dx a dr or surgeon is needed, for treatment the best PT or even chiropractic /body worker if posture or previous whiplash/injury /sports might be a part of it..
Depending on your ins coverage you may need a MD to RX the PT...

You might try these self care things on this link and see how you respond to those-
http://neurotalk.psychcentral.com/album.php?albumid=422

I think I may have a mix of both vascular and nerogenic. Sometimes I get a throbbing or going cold pain in my upper arm and it can be related to my posture. Sometimes my arm feels like it's almost cut off or asleep though just barely and at a deep level not on the surface.

I do phone call center work very part time with extremely minimal data entry. Occasionally we will have to do some typing and it can really hurt me or set me back sometimes carrying over to the next day. I've noticed recently though if I really focus on maintaining a strong posture it hurts much less.

I used to ignore my posture because if I sat or stood up strong my left arm would go numb so I just let it slouch. I've noticed recently when I tried a posture reminder brace that I was able to change that behavior by maintaining good posture through the throbbing that it would eventually subside and I actually don't seem to have that problem much anymore or it has lessened by forcing good posture. I no longer get the throbbing/cut off feeling when I wear it or maintain good posture on my own or at least not as bad or quickly.

With writing and typing it feels like a pinched nerve deep under the shoulder blade at times though the pain can go many places but feels neurological in nature. It's also nero-muscular because I do respond to trigger point release and massage.

I'm in pain mostly 24/7 unless I'm in the shower, hot tub, or in the morning when I first wake up before moving around much. As long as I avoid aggravating the symptoms it's not bad. If I try say writing more than say a signature I will be in very high pain till the next morning or maybe even for days/weeks or months depending on how far I went. Usually I can get away with it once, though if I repeat the same mistake for 2-3 days consecutively it can cause a more long term set back.

I seem to respond to neck traction, when sitting in a over to door traction unit I can write pain free. Though the benefits are short lived and only last as long as I'm in the device.

Also a reason it could have a vascular component to it is when I dance say go out clubbing or even just hop around and move on my little trampoline and get my heart rate up and move my body/arms dynamically all about I am in zero pain and it may even last a bit after. When I'm in this state I can play with hand putty and my grip doesn't bind my shoulder up.

I'm still debating getting the MRA it's actually not that expensive and I've never had any type of vascular test done. Besides trying the adson test with my roomate where my pulse is lost on my left and diminished on my right.

Have you had a reg MRI or any xrays , just to check for any cervical spine issues, or possible extra rib? That is usually the first step, ruling out any other possible causes like anomaly in the c spine/collarbone etc.

For the call center do you use a headset- or actually hold the phone in your hand (a bad position)?

I've had a cervical/upper back MRI done before and actually just got another taken a few days ago. Should have the report and images back in a few days. I had a x-ray a long while back. Don't recall if I had a cervical rib, will try to look it up and get a copy. Here's a view from my old MRI though I don't think it shows the ribs only the spine though maybe that can tell something?

I use a headset at work.

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Also I've had injections by the nerospine institute, so my images have been reviewed by a specialist. He did an injection in t-1/2 and also injected my left pec or chest area I don't recall exactly where with no change several years ago. I recall they discussed the ribs and that may have been why they did the chest injection though I don't remember.

Got my MRI's back today it reads:

"Incidentally noted left C6-C7 nerve root sheath cyst noted."

Could this explain my pain?

Something to look deeper into since it mentions nerve root.. Size isn’t mentioned.. make sure the dr double checks that image & info...