[thunder92]

I have been diagnosed with TOS. Only because my pulse was lost on 1 artery during the test were they have you claspe your hand. I have a lot of pain in my neck and some in middle back and lower back. I want to have an xray done to rule out a disc bulge etc.... Maybe pressing on a nerve. I've had a head and neck mri a while ago but they were just looking for a tumor or something causing my dizzyness and cold feelings in head.

Anyway: do i need a xray or an mri?

thanks, merry christmas

[Jomar]

I think if you are having quite a bit of pain in those other areas the drs should investigate those also.
At the very least, an evaluation and maybe xrays too.
A good dr or PT should be able to do diagnostic testing and evaluation for disk problems. Then from there they should do MRI or more detailed scanning if needed.

You might post on our Spinal forum with descriptions of the mid/low pain and see if they have some ideas.
http://neurotalk.psychcentral.com/forum22.html

Herniated and Bulging Discs
http://www.spineuniverse.com/display...rticle437.html

[tshadow]

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.

[thunder92]

My primary did a neck xray and said I have pretty bad arthritas in my neck. Said I need to go see a neck/spine doc. 1 month wait

I'm only 32 so arthritas seems kinda wierd. Hope the next doc finds a nerve impingment etc........ Holding breathe

Thanks

[numbhands]

Originally Posted by thunder92

My primary did a neck xray and said I have pretty bad arthritas in my neck. Said I need to go see a neck/spine doc. 1 month wait

I'm only 32 so arthritas seems kinda wierd. Hope the next doc finds a nerve impingment etc........ Holding breathe

Thanks

Thunder92, I have had TOS for over 2 years along with cervical/neck arthritis, degenerative disc disease. I waited for doctors to figure out if arm and hand pain and numbness was from neck injury/car accident or from TOS. They completely left me hanging for 2 years. 4 different diagnosis from 4 different neurosurgeons. Now I went to ER on Christmas a few days ago because my worst arm, left side, and hand swelled up, turned purple then blue and went completely numb. ER did ultrasound found blood clot in vein in thoracic outlet area on left side. Now still hunting for correct surgeon. ER just gave me blood thinners for clot and nothing else!! Horrible pain!! Gets much worse when using computer. Listen to tshadow. Everything he/she said is correct!! Have done many days of research online trying to get answers. I have been completely disabled from my occupation as legal secretary for 2 years with no compensation!!! because originally misdiagnosed by doctors etc. Don't wait! Try searching online under "TOS blood clot" and "TOS vascular surgeon" etc. for more information and referal to doctors. TOS only seems to get worse with no treatment. If you can get PT with Edgelow technicque, try it first, if doesn't work, go to the surgeon for consult right away. No other PT techniques seem to work for TOS sufferers. This is why I got so bad, nobody where I live knows the PT technique so they only made it worse. Take care and good luck!