[KLS2007]

I went back to the doctor today & he said my EMG was normal so according to him I don't have neurogenic TOS. Now he's sending me for an ultrasound and a CT scan to rule out vascular TOS. I really didn't expect the EMG to show anything as they didn't test the brachial plexus area nor did they put my arm in any positions that provoke symptoms. Also, the test was normal in the carpal tunnel area as I have had 4 surgeries for that back in the 80's and was told back then I have permanent nerve damage there....funny that's not showing up now! What really got me was when I told him that I had to quit taking the Elavil that he had prescribed for pain because it not only turned me into a zombie, it gave me a rash all over. He told me that it had to be something else, that Elavil hardly ever gives a rash. I tried to tell him that I hadn't changed soaps or anything else that could have given me a rash and that the Elavil was the only thing different & it started going away as soon as I quit taking it. I asked him if I could try something else for pain since the Elavil wasn't working out for me and he said "we'll just skip that for now". If I didn't have to see this jerk because of WC I would have walked out of the office at that point. He also wouldn't write me a prescription for Ibuprofen & a heating pad so I can get reimbursed from WC for those.

[billy027]

You need to change doctors. I used to get the cheap EMG's from a doctor and switched to a new doctor who did thorough EMG that showed lots of problems.

Try to hang in there. What area of the country are you in. Maybe someone can recommend a doctor for you if I can't.

[Peg24]

Sorry to hear about your frustrations. I too, would find another Dr.

My EMG was normal also and the Vascular Surgeon who did my surgery told me he was not surprised.

By the way, after doing my surgery, he told me I had a bad case of "Neurogenic" thoracic outlet.

Peggy

[Jomar]

Is that dr from a MCO { Managed Care Organization}?

my employer wanted us to go to the MCO drs for any injury, I did 2 different times, and they just seemed to want to patch me up and get me back to full work asap. - and I "broke" again after a few months and the last time even less than that, when it became TOS.
They overlooked the repetitiveness of the work and the fact that I had reoccurring injuries in the same areas.

I'm not sure if all states are the same - but I think...
Usually wc doesn't actually send you to a treating Dr, usually just for an IME or QME- a one time evaluation of your injury. { sometimes more than one if long term problem}

At least that's how my case went - MCO, or my own dr, then the IME evaluation after a few months.
I think after a certain time you can change drs anyway - info should be in your wc booklet or the state website.

Did you ever consult with a wc atty on this yet ?
They might give you some helpful tips and some even have preferred drs lists and they can help you change to a dr that will be more on your side.
You can find them in the yellow pages and visit many before you choose.

[KLS2007]

I'm in TN and right now I have to see the WC doctor. Here when it's work related you don't get to choose your own doctor. Your employer gives you a panel of 3 doctors and you have to choose one of those. All of the places on the list they gave me were WC clinics....all they see there are WC patients and people going for work physicals & drug screens. The doctor I'm currently seeing is one that I was referred to by the original doctor....he comes to their clinic one afternoon a week. I do have an attorney but so far he seems pretty worthless, he hasn't done a darn thing yet. He didn't even file the appeal on my TTD payments. I had sent him the papers I received in the mail and thought he was taking care of it then he sent me an email AFTER the deadline telling me to get it in ASAP. They automatically denied me for being late. If I don't hear back from him shortly after the holidays I'm going to hunt for another attorney. When I was initially looking for another attorney I had trouble finding one to take it, one of them told me that there wasn't enough money in it yet for him to take it. What a screwed up system!!! I've emailed him several times asking what I can do about finding a different doctor but he never answers me about that. When this all started I had no idea this was going to be such a nightmare!!!

[finz]

Can you try talking to your primary MD about it ?

I know that , insurance wise, all testing should be done by WC, but I've gotten some things covered by my regular health insurance because the lack of action on dx'ing and treating my TOS by WC was impacting other areas....ie, higher blood pressure because of pain, higher blood sugars because of Neurontin, and depression. Is there something that your primary could work up.....like headaches, which are probably from TOS, but could justify testing/treatment under your regular insurance ?

Desperate times call for desperate measures.

[Jomar]

I had better luck with Faxing my wc atty with my questions - it seems the receptionist/assistant never passed the messages on or they were lost, illegible or something.
but at he he was good about deadlines and such.
but yeah that systems stinks...

[tshadow]

KlS, fax the attorney and put down that the doctor is acting funny and you need to talk ASAP. Tell him the doc doesn't seem to be on your side, and all of the complaints you have. Your attorney should have a trusted replacement to take over the case and as far as I know the rules currently, and your case lightly, my guess is you are in teh zone of being able to "elect a new primary treating physician." If he is not your PTP, then maybe talk to your attorney on how to best handle this cantankerous donothing.

He totally does not "get" neurogenic TOS, as there are almost never ANY abnormal tests for it - occasionally the slowing of the c-8 nerve is indicative, but it all depends upon the skill of the EMGer and where he's putting his pricks. And, as Togut as said a million times, EMGs aren't good for proving TOS - it's the wrong science for what we're looking for! Apples vs. oranges.

Please don't be upset by the "normal" results as long as you are seeing the mountain of other symptoms, pain in all of the normal TOS places, loss of normal use of the arm / hand / neck, fatigue, the RSD burning of skin or skin color changes from dead white to bright red and HOT for no reason.

And reread the other testing options to see if there are some you missed, and make sure you DO have TOS by ruling out any other anomaly. I mean, who in God's world WANTS TOS???

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors who say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to stop using the computer and at any cost, PLEASE get voice software. Dragon naturally speaking is what I use. Just the pose at the computer, called “the gargoyle” pose, can trigger neurogenic TOS symptoms to flare.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, because if you look at how you spend your time, this is where / what you probably do the most if you are working full-time, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. And do NOT take anyone’s advice on this, ONLY an experienced, good, work comp attorney and the consult should absolutely cost nothing – FREE. No matter what, please get to an attorney to know your rights, and also, to know what you are RESPONSIBLE for also! There are time-sensitive forms, etc. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.