[Tempus]

And not only does the brachial plexus look ok but the cervical disks are only showing minor signs of degenerative disk disease, nothing that would explain the swelling in my shoulder/underarm or the pain under the clavicle, underarm, and down my left arm. Nor does it do anything to explain the color and temperature changes in my hands (mainly left). Now the neurosurgeon would like to run emg test on me on monday. I have no idea where to go with all of this next.

The MRI results point away from TOS but not toward anything else. Talk about frustration.


Sorry for the grumble fest but I just needed to vent. Thanks for letting me.

[Jomar]

Was it just the standard MRI that was done -or a special MRA or MVA?

Generally a standard MRI doesn't really show TOS anyway, unless there is some obvious anomalies in the in the bones or ligaments or other solid structures.
It's basically used to rule out the neck or c spine or any other structural causes for the pain and symptoms.

The hard nodule in armpit could be a triggerpoint or blocked lymph node.
Of course you should have it checked for something more serious also.
Is it there all the time or does it come and go?

Swelling can be a symptom of vascular compressions as well as color changes.
I'll bump up or testing suggestions for you.
a thread on testing and discussions-
http://neurotalk.psychcentral.com/sh...2184#post92184

[DiMarie]

I agree with Jo, if it is a standard MRI, not a top one done by a tos doc reading it, it is not likely to ever say TOS. MRI are generally used to rule out other items,
Oh, for it to be so easy to see TOS on a MRI.

TOs is sick nerves, sensory nerves, they are the first affected not the larger one tested in am EMG. Those larger myliented/sheathed or covered nerves are the ones that make the muscle move in the arm; as you feel heat from a candle a nerve will make the arm jerk away..motion!

These are what is tested. TOS is not affecting these nerves until later, the first nerves affected small sheathed, myliented nerves are the ones that when the candle burnt you, your skin it red, hurts and send pain to the brain....These cannot be tested by a normal EMG/NVC.'However, Rick Reed and Tom TOlson in Norristown and N.E. PA do test in a manner they can detect the "F" waves or whatever it is to show TOS.

On the forum is a technical artical of how they detected it in their EMG...I will bump up
You symptoms sound like TOS symptoms, Some have front chest pain, I also have the under the wings, underarm tenderness and above my wing feels like a butcher knife in it. The base of my skull had a huge knot it took years to get rid of. I had terrible cervogenic migraines from it. Arms, and the palms of hands are vivid red, to purple tips, and blotches with use. My ring size is up two full sizes.

Most doctors are really just trying to treat the symptoms, you are a puzzle and the pieces are all over their desk, bit and pices makeing some shape and other not fitting into any place....Unless they specialize in diagx TOS, you will likely be given a mimicing diagx.
I hope that you can find some help and answers,
Dianne

[Tempus]

Thanks for the help and thanks for the link jo55. I bookmarked it for future reference.

[Horizontal One]

I am glad I saw this. I am going to print off and give info to my doc when he comes and sees me and have it ready for when I see the new specialist.

Hx

[tshadow]

TEmpes,

You seem to be kind of confused about how TOS acts and how it is caught. It is a highly painful condition that stops most of us from working with our upper extremities due to pain in our arms, neck and shoulders. To be discovered, and distinquished between say a simple should injury, the doctors run a lot of tests and do their best to pain a picture of TOS. But it is hard because there is not a TOS blood test, or TOS hand test, etc. It's a tough blending of factors that takes a trained eye to see.

So if it's gone this far, the best thing to do is check out doctor list, and find somone in your area who at least has seen TOS, and start ALL of the testing I've written below, as most if not ALL of us have had ALL of that testing to get our results! Good luck!

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 ho 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 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, 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. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

[Tempus]

Thanks Tshadow. I was just in today for my MRI results and to have the EMG/ SSEP (neck down test) run and all results look good aside from direct shoulder joint problems (i.e. mild arthritis, bursitis, minor tendon damage). Also I have 4 disks showing mild degenerative disk disease aside from the surgically repaired disks in my lower back. Nothing noteable in the brachial plexus or C-spine so my Neuro made a few suggestive comments about my vascular surgeon's thoroughness and suggested I return to my Ortho if I wish and if he doesn't find anything conclusive he'd like me to go to the Mayo clinic down in Rochester and have the whole battery of tests rerun by the specialists there. Nothing's ever easy is it?

Thanks for all of your help folks. I'll pass along an update when I have one and I'm still open to any suggestions.

[Jomar]

these are from our drs list-
Minnesota

Dr. J. Ernesto Molina
Thoracic Vascular Surgeon
University of Minnesota

Dr. Paul Gannon – Cardiovascular/Thoracic Vascular Surgeon
Vascular Surgery Associates
3960 Coon Rapids Blvd., Suite 216
Coon Rapids, MN 55433
612-427-8547

Rehab People's Physical Therapy
7260 University Ave. NE Suite #260
Fridley, MN 55432
Phone: 763-571-4162 ext. 1204
Fax: 763-571-0922

Dr. Robin Crandall
Orthopedic Partners
Fridey, MN
and
Find a Vascular Doctor - worldwide

http://neurotalk.psychcentral.com/sh...ad.php?t=17638

[Tempus]

New discovery today. I've had frequent chest pain for many years now along with GERD and its associated issues, but yesterday I had a really bad "attack" of what I have been told is a hernia pushing up and causing pain so I saw my regular doc. I sit down with him for a while and he puts me on the table and presses around a bit and tells me that I have costochondritis (inflammation of the chest wall/connective tissue between the ribs and sternum). I nearly fell over. I've told him and my other doc of swelling in that area of my chest and pointed it out to them several times before only to be blown off. Now he notices it and presses a few times to recreate the symptoms and we have a name for part of my problem. After 10 years of tests and medications and doctor visits... I don't know if I'm relieved or angry as can be. I know it's not likely to be TOS related but I had to vent about it. Thanks for letting me.

[DiMarie]

Actually Tempus inflamation of the coastalclavicalar nerve likely, is incited by TOS compression. Some are often in the ER from the pain to make sure it is not a heart attack.
In my case I often get a feeling as if I have a vibrating pager under my breast going off.

All related, if for you having TOS symptoms, I bet you would not have the inflamation.

I can reproduce mine (press going back) all the way; feeling back under the armpit to the under wing area, to the top of the wing, and in flares even up into my head base of the skull in a knot.

ALso, when there is spasms and compression Dr togut explains it as the chest wall is being compressed and casuing the inflamation to this nerve, The lungs expand, the diaphragm is coming up the ribs are having sick nerves pass through over the first rib..or extra ribs, So this compresses and can cause the exact same thing the doctor is reproducing...

BUT>>> I would ahve a test done to first rule out a hiatal hernia, and second to make sure the medication is not causing a slow dump of the gall bladder, blocking back the bile duct.

Also, my Topomax gives me acid reflux. When my dauhgter was on Oxycotin, it was so sever, they were going to do a surgery to stop the reflux from coming up; the acid levels were so high and she was slosing so much weight. But went off oxycotin high dose to durageic patches, so not by mouth and it went away.

Hope the reflux calms down, terrible to try and sleep with it.
Di