Originally Posted by 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. MS and other illnesses can mimic TOS and are somewhat easily ruled out.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or structural 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. Do not be surprised if these come out normal, but you might still have neurological TOS.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but most 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 – Dr. Togut explains that it is not the correct testing for TOS type nerve damage, but especially for work comp cases it is required. Many of us will have signs of carpal tunnel, elbow or shoulder damage. This does not mean you should rush to an orthopedic surgery however. 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 / contrast involves IV and possibly 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 CTs? I always get this one wrong.) By Dr. Collins of UCLA 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 $12,000 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. You should have a pain management doctor as part of your team. Usually these are anesthesiologists who have terminal or hospice care as their background. They are the ones who have the malpractice coverage to handle the opiate prescriptions, the expertise to do implant surgeries for pain, as well as trigger point, botox and other modalities for pain. Many of us are on the highest pain medications possible as the TOS pain for many can be unexpectedly high. These docs also treat RSD, lymphodema, fibromyalgia and other nerve damage diseases that can stem from 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. There is also the Sharon Butler system. You can get both via mail, for your own home use.

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 and RSD 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 who has handled repetitive strain injuries to the upper body should be sought 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. You should get and keep a copy of every medical report and test result and give these to each new doctor that you see. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

Be very careful of: ANY site which tries to ask for money; any chiropractors or other doctors who CLAIM they can CURE TOS or GUARANTEE you can get BACK TO WORK if you only work with them over time. I have not known anyone "cured" except for one man who had surgery in Denver and he was returned to a sitting job. Otherwise, NONE. And I do mean NONE. Be so wary as we are in so much pain we are susceptible to great promises.

Copyright 2003 - 2010

I took the older TOS post - I forgot:

10. Immunological testing - you need to see a doctor like Dr. Bluestone in Bev Hills who is a world renown rheumatologist, to rule out immunological and rheumatological diseases. This includes diseases like MS, MD, lupus, and more. Also check your blood sugar for diabetes.

I am learning that besides having neuro TOS, and RSD, the I have a congenital problem with my metabolic actions regarding handling pain management tools. For instance, I have a constant fight of starting a new med, and it works well for a short while, and then I start getting classic allergy symptoms (welts on legs, puffed up eyes and mouth and tongue) and these allergy symptoms can come on lightly, slowly, or, the first take, within 1/2 hour.

What is also a part of this metabolic inability to properly or "normally" filter and use pain drugs, is for instance, since I was a young woman, if I drank alcohol, I vomited EVERY single time, no matter how hard I tried to just drink like everyone else. By the time I was 21, I was already using 12 Step Programs to not drink.

This testing is cutting edge, and there is not an "article" that I can offer for others to read. In fact, these things are being studying in Germany, along with the Ketamine. I do not have enough knowledge to add more now, but you know when I learn something that helps, I post it.

Its the chicken or the egg syndrome. We who have these "allergic" responses can have genetic mutations in methylation pathways via the liver. I had this tested out of pocket and it has saved my life.

I am a slow metabolizer in the P450 CD6 enzyme. With these tests it will come with a list of meds that you should or should not take with the dosage for your doc. It comes with a software that I or my doc can type in all my meds to see if I will react and if there are any contraindications with each med together or separate. Having a P450 CD6 mutation is why I cant take morphine/codeine or most anti-depressants. These tests are now being used by hospitals sometimes or at least when i hand the results over now they know what i am talking about. Five years ago they would say " oh, I quess you cant take that"!

This can also be a mitochondrial mutation. There are 3 centers in So. Calif. UCSD, UCI, UCSF. They can do genetic DNA tests that can pinpoint what is mutated, damaged, or missing in your mitochondrial cells. This is cutting edge and has a huge piece of the puzzle for things like RSD, MS, Fibro, diabetes, etc. which i personally still think sets us up for these syndromes. I will let you know what happens once I start in the center at UCI. I'm doing this for my children.

The genetic counselor asked several questions and one was does anyone in your maternal side have droopy eyelids. I was amazed because my mental picture of my grandmother was her holding her eyelids open with her finger. My mom had it and I have some too. She said that was a marker for mito disease. Ha, I thought it was just getting old LOL! I told her about TOS/RSD/Fibro and she said it is all mito mutations. Environmental factors are huge as well in damaging the mito. She stated that you can be pre-disposed and then WHAM a trigger can start the cascade.

She stated they think that they can correct these diseases in the next 5-10 years God willing.

You are talking on the edge of science, and do not understand it all. I do know that a droopy eyelid is a signal of myasthenia gravis, which fits my model well. I have TOS with RSD, then diabetes, and then that threw my body into thrush since I am bedridden. It all gets so complicated. But for 6 years I lived with unbearable, horrific pain. Then I met this doctor, and he asked me some digestion and allergy question. So he gave me a pain relief that hit the mark. I am not a happy camper, but I am not in that horror movie that I felt I stepped into.

I thank you for your comments, and we need to dig further than EMG tests, because they just aren't hitting the marks, and it's like having a broken foot, and the doctor keep giving you cough medicine and tell you that you have a cold!

UH - it gets hard. But that book "My Imaginary Ilness" by Chloe G.K. Atkins really helped me in many ways.

Bump up. Copyright 2010 - 2012

Bump up.

I have found that nerve blocks anywhere but my C-5 have been a waste. The
C-5 spot, on the other hand, gave me so much relief, for a short period of time (one month.)

God bless.

Thanks for the post, very very helpful.
I am hypothyroid without my meds.
I have had genetic testing by 23andme.com for $99 (best $99 you can spend) I will be looking for the P450 CD6 enzyme. I do have a gene (rs6269 AA) that means i have increased pain sensitivity.
I have no relief with nerve blocks of C4-C7, still pain in the shoulders while sleeping.

thanks again.

J.

My "good" doctor - the one who believes and tries to work with me, rather than argue - he got me on oxygen, which greatly lowered my pain meds needs. Then, we tested my hormones, and they were "ZERO" on ALL of them!!! So he talked to the pharmacist and they compounded 3 things, and now i'll take that evidence to my work comp primary doc and get them paid and / or reimbursed.

Oh, yes, I am still fighting. The ins. co. had lied so many times.