Thanks Alison,
You are very nice and helpful.
I do have Dr. Fried!!! He is great! He diagnosed tos after first doctor did three cts surgeries. I kept telling first doctor something was wrong after surgeries and he kept doing partial emgs. Acting like he didn't believe me. He always found out I was telling the truth but he never investigated further. Just wanted to operate, finally I was able to switch to Dr. Fried.
I do have attorney and wrote letter stating about what that doctor did. My wife was with me. I don't know if it can be pursued further but I gave letter to Dr. Fried and lawyer about what he did.
Arm sore today because I wrote a little.

Bill

emg numbers...i am not sure if this is the same number, it is called: "stimulation of the cervical root at C7 across the thoracic outlet" adn listed under Ulnar nerve measurements
51M/sec on the left and
46M/sec on the right

I have no idea what "normal" is, but I do have TOS pretty bad, just had surgery on the left and waiting just till i am recovered enough to do it on the right.

Hello
I'm new here, having just been diagnosed with TOS. although I've been telling everyone for 3 years! I feel your pain tho. I found if I keep moving (slowly and methodically) everyday it's not as bad. If I overwork it AAHHH the muscle pain is a killer! (I no longer have all the feeling in my left arm from the nerve damage ) But it never locked up on me. That sounds like scar tissue or the lack of fibrins left in the muscle (the stuff which gives the muscle elasticity).
Where in NJ are you? I also live in NJ. South of Trenton in Burlington Co.
It's nice to know someone else in NJ who knows what I'm dealing with. The family just doesn't understand the daily struggle working and running a horse farm has on my arm.
Who is your doctor? I found mine thru a friend who works at Deborah heart and lung. He was actually recommended by the chief of cardiothoracic surgery.
I have one more test before we talk about surgery and frankly I'm alittle scare with some of the results I've been reading about. Although I wonder if all these doctors were general/vascular/thoracic or cardiothoracic dr's. (I work for gen.vas/thoracic drs AND WE DON'T DO THESE SURGERIES due to the high risk!! We leave them up to the cardio guys. I'm very confident in this guys work but the rehab has me gringing. I almost don't want to have it done.
Are you looking into surgery or are you going to do PT?
Either way good luck.
horsemommy

Is the worstest besides posture...
small motor skills are killed by neurovascular TOS

Who is your doctor? Dr. Fried-he is great

No plans for surgery at this time. Do take pain meds at time. Just Daviset.

I love writing but its killing me.

Ime put in plexus disorder/nerve root nes and wc added it to cts/palmer fascilia claim

At least he didnt disregard plexus-i guess that means tos. the ime did hurt me though.

IME I saw was from the OC, Cali.
U have nothing to worry about back there.
He'll be getting a wake up call here shortly to get him OFF the State referral board of IME's for Neurovascular conditions.

Happy to hear u have a gr8 doc on the east coast.

Writing, working on W/C and disability legal work, sitting and at the compooper is the worstest besides everyday functions of life.

AFter 7 years of TOS, I finally found the bestest doc of PT. Keeps my range f motion at bay , the swelling down and muscle spasms at bay. Thats until I start using my arms or hands. Pace, steady and calmly as she goes.......

I will chime in...probably the minority viewpoint...so take it for whatever it is worth....

I have bilateral TOS..more left than right. Left is the painful side. Nerves, arteries and veins are compressed. Verified by Dr. James Collins, at UCLA.

I have worked with PT and exercise and found help. It is a SLOW process but I am making gains. Less flare ups and less intensity when I do flare up.

In the beginning I had one pain that I sort of played with (this before my dx). I called it "gunk" because it felt like gunk in my left shoulder. It limited my ROM with my left arm and created one of many of my "pains." I did yoga and there was a stretch in yoga called "extended cat dog" which while in Cat you move all the way to child's pose but your arms are stretched out if front. I would often have limited ROM to do this stretch because I'd start and I'd have pain. I decided one day to play with it and "push through the pain." My instinct told me that perhaps the muscle or whatever "gunk" was knotted up and would release if I did several reps of the extended cat dog. Sure enough it did after about the 3rd to 4th repetition. It was miraculous. Everytime I had this particular pain...I'd do the extended cat dog and voila...it would go away (I still had other pains but at least I was able to do something that would take care of the one in say 5 that I had). Eventually this "gunk" disappeared never to return.

Lately I've felt like I have gunk somewhere else nearby...still left side..but I feel it more when I try to raise my left arm...same idea...limited ROM..pain. Yesterday and today I tried to push through it...I found a reverse sort of windmill and after about 2-3 of those it goes away..of course it seems determined to come back within 5-10 minutes but clearly it does go away such that I can fully extend my arm over head without any other compensating muscles kicking in. I do not seem to flare up afterwards...but it is early and I sense that I will not as a result of this. I can only conclude that YES, at times there is GOOD PAIN that you need to push through to get a release of a muscle contraction/knot/compression.

I certainly will contact my old PT to ask her about it but I'm confident that she will agree to keep doing it if it is not causing any flare ups.

Just my 2 cents.

with holding a pen/pencil. My grip is giving out. Adding to my problems is that I have besides tos, median,radial, ulnar and carpal problems on same arm as brachial plexus. I still cannot raise my arm above my ear or reach straight out without terrible pain.

I love writing but its not possible now.

sometimes you need to totally rest for awhile - but still do some ROM and very gentle stretches and be aware of shoulder/neck postures.
I really feel that finding Sharon Butlers TOS program and even just doing the first 4 things has been a great help for me. I still do those when I feel I need to loosen up.

Then as symptoms ease {hopefully they will} don't be afraid to explore with gentle movement and motions as noname suggests. Exploring and learning what your own body can do is the key.

I had a similar experience with my RSI therapy - got to a point were the forearm pain was constantly @ 2 - PT hooked up a biofeedback unit and my forearm muscles were not fully relaxing. PT suggested some exercises with 1 lb weights for my wrists/arms. slowly to lifting up and lowering and then let my wrist/hand hang over the edge of a table and the weight would help to stretch. It was more sore the next day but as I carefully did more over the next days the deep achy arm pain went away.
But another sx showed up - more of a just under the skin pain - but now I know this is from my version of TOS - the musculocutaneous nerve gets compressed or impinged.

Each of us is so different as to our injury/condition that what helps for one may or may not help someone else.

That's why I think finding a knowledgeable, well rounded and advanced PT, Chiro, body worker, or somebody etc -to help you get a good start on this self exploration is so important.
Hopefully too, they can use some modalities {heat, ultrasound, E stim, low level laser, massage} to help to resolve some of the pain, before getting into too much active uses. so much will depend on communication and how your body responds.

Oh and there are some really interesting and helpful posture, massage, chiropractic- all kinds of therapies you can get a idea about them on the YouTube or Google videos - it is great for an educational tool to see how the good or bad or if it might be something you can do at home that is easy for you.

billy- how did you acquire TOS? from an injury /accident or repetitive type work??

sorry, noname, but i have to respectfully tell you, i think it is a little bit irresponsible to encourage people with neurovascular injuries and/or entrapment disorders to try to "push through the pain" using yoga poses such as the one you describe. and to do so without the input of a trained PT, no less, beforehand? sheer madness, i say!

in fact, we have at least one forum member whose very injury was caused if not severely exacerbated by doing this very type of thing. now, perhaps you are young enough or your TOS mild enough that you can still get away with doing things of this nature. but i certainly wouldn't advise anyone else to try it...

that is just asking for trouble, in my humble opinion. TOS is a very harsh taskmaster. it is nothing to fool around with and a confounding thing, to say the least. what feels like muscle pain is really nerve pain, and vice versa. the nervous system is in a constant state of hyperexcitement due to injury to and/or ongoing compression of the BP, and the involved musculature is in a constant state of spasm in a futile attempt to protect the affected nerves and blood vessels, and 'round and 'round she goes, where she stops, nobody knows...

ayenga yoga taught one-on-one by a certified instructor trained to work with people with injuries is one of the few forms of yoga i can tolerate, personally. and i cannot even do that right now. yoga simply has too many arm movements for me and for many other TOS'ers that i know. so does t'ai chi... and i LOVED doing t'ai chi when i could manage it!

so i think it's great that you have gotten your TOS under control, or that your case is not that advanced, or whatever the case may be for you personally. i'm just a bit nervous about putting specific movements up on a board like this one that someone else may unwittingly then try for themselves, with potentially disastrous results if not closely supervised by a trained and caring professional.

i know that's not your intention, but you see my point, i'm sure (i noticed you say you're in the minority view; perhaps that is what you meant by that remark?). i am all for PT, bodywork and other modalities, home programs including yoga, don't get me wrong! just easy does it. we don't want anyone to reinjure themselves. and with the TOS personality, it's just too easy to do!!!!

so even though you don't expressly say everyone should try to do this certain yoga move, it worked for me - there is a danger that someone might do exactly that. that is my point. nothing more, nothing less. i hope you won't take offense at what i'm saying here. i just don't want anyone getting hurt (more hurt than they already ARE, i mean).

and oh, just as an aside to bill: FYI - the nerves that comprise the BP (C-5, C-6, C-7, + C-8 & T-1) branch out to become the 3 main ones in the arm that you mention, median, radial and ulnar. so these are not SEPARATE dx's or issues for you, my friend. it all falls all under the TOS umbrella, i'm afraid! you may have some double- or triple-crush issues going on, but i'll bet you even $ the original injury was in the BP. that's where the trouble began, and that is what set you up for the nerves to become vulnerable elsewhere as they travel down that big strong arm of yours...

but fear not! now that you have the right dx and the good doc fried, help is on the way. hey, have you heard of a PT named suparna over in allentown? i've heard she is running one hell of a program over there... check it out, bill! googlebreath! i want to go stay there for 8 weeks but i need shelley to take a roadtrip with me and she's all talk and no action, apparently...

bye, kidz. and no offense, noname. i wish you had a name and i always enjoy reading your posts, because we need different viewpoints to keep this forum alive and the info flowing!

alison