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

I agree with Alison,
If a doc did that to you...makes me angry.
An IME did that to me recently and my husband almost took his head off as I agonized in pain. He later went on to say on his report I was exaggerating all my chronic pain sx and did NOT have TOS.

This doc has no clue, no education on TOS, the chronic pain it brings and treatment.

Get yourself to a KNOWLEDGABLE TOS expert like Dr. Togut or...so many others here on the east coast will get you there.

Never do ANYTHING that creates immediate pain.
"No pain, no gain" is NOT part of the everyday life of TOS.
Chronic pain specialists say it takes up to 18 hours after you have done something too much to go into a flare.
So, immediate pain is a NO NO...

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.