NeuroTalk Support Groups - Do I need an MRI or xray to show disks etc??

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.