Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 11-27-2010, 06:31 PM #1
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Default How to identify TOS, as per my experience...

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 testing 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 just a tool to help you figure out this extremely difficult medical problem. Normal results in all, can still conclude one to TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it. Of most importance, or frustration, doctors seldom, if ever, recognize the illness or injury and act quickly enough. TOS is something that the patient must actively push the medical community to identify and treat, cure or relieve its effects on our lives.

I am not a doctor, and this description of tests is just "laymens' terms." We have lists of doctors on the top of the band here, and these are doctors whom we have seen and who should be considered more knowledgeable than most on TOS.

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run, and by being examined. Sometimes they will run a brain MRI. MS, lupus, MD and other illnesses can mimic TOS and are somewhat easily ruled out. The blood tests can often reveal a lack of Vitamin D, Bs, diabetes or liver problems to address.

2. Neuro / ortho / and vascular doctors will be doing the MRIs of the neck, brachial plexus, spine cervical, spine thoracic, and spine lumbar, as well as the brain, and may also focus on the shoulder, hand, etc., looking for any obstruction or structural abnormality. These MRIs can be run with fluid, for “contrast”, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages. This would tend to identify vascular TOS and require immediate surgery. 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. You do NOT have to have an “extra cervical rib” in order to have TOS.

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. Many people have stated that you should start the surgeries at the top and work down, as, for instance, getting carpal tunnel surgery may fail as the TOS up at the neck is blocking proper circulation and function.

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. Again, neurogenic TOS involving the nerves can have vascular type symptoms as the nerves control our blood pressure, breathing and digestion. High pain can cause high blood pressure, and since blood pressure is not good for the body, bringing down the pain may then be very important.

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. Usually these tests are not painful, and if one is claustrophobic, you can ask for ativan or another medication to calm you during the testing. Self hypnosis and reminding oneself that no one has ever died doing this, and that it will end soon, is of help. Ask your techs for help!

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 luxurious test. But you can ask, especially if you are in work comp. (I think the cost is $16,000 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery. This is often done under light sedation when an injection of the muscle on the neck causes all of the TOS symptoms to go away for awhile. This tends to indicate that if the scalenes were removed or at least thinned down, then there would be more room for the nerves to function in that area.

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 unbelievably but truthfully 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. You can learn these treatments and have a home aid or significant other massage you each day to help lower pain and help you get on with your day. Each person’s success is individualized, however, as, for instance, I am bedridden 90% or more each day, no matter how hard I am fighting TOS.

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 for anyone to do any of this for you or advise you of your rights, 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. Same for the Social Security / Disability attorney. No matter what, please get to an attorney to know your rights before you say or do anything concerning work, and also, to know what you are RESPONSIBLE for also! There are time-sensitive forms, etc.

If you are work comp, you ABSOLUTELY should get and keep a copy of every medical report and test result, make full copies as you go on to new docs, 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 a 100% disabling condition. Your own copies of reports may save your case.

In dealing with TOS for the past eight years, I am figuring out that there is no one path to a better life.

Firstly, you have to do ALL of the testing on my long testing post to rule out what you don't have to deal with. This is my opinion, based upon my own logic, that you don't want to run around screaming TOS when you could have a neck disc surgery and recover, as my own home aide did. (Our symptoms were identical, but her cause was totally different than mine.)

After that,

Consider surgery and by whom. There is no shame in getting multiple opinions and you can ask right here!

Leftover symptomology after surgery - might you still have symptoms from your TOS and may you have additional illnesses or injuries which need to be addressed? (In my case, RSD and an unknown immunological type illness appears, as well as pain from my TOS after surgery.)

Look at Physical Therapy and all of the types of therapy, (I just read Jo's thread on trigger point therapy for instance, just to remind myself of where to direct my home aide when she does my daily PT.) In my case, a very good, soft, but direct massage (including those trigger points or goose eggs that develop) each AM and maybe even PM takes down my pain very much. I still need medication to have a quality of life, though.

Pain Management Team - you should have a team mentality for pain mgt. Meds, sleeping habits, massage, topical creams, patches such as lidoderm, hypnosis / guided imagery and identifying types of headaches and what works. Having a mate who is well-dressed and can speak well may be very valuable in pain management. Try to wear clean, soft clothing, as in looking your best but not over or under-doing it. Don’t be surprised if some docs call you a medication chaser – just keep looking until you find a compassionate doctor, and always take your medication as told – you do not share or fool around with these meds, as legal problems can develop. Keep a locked box if nec.

Keep regular blood testing on the organs and for rheumatological, immunological or diabetes type diseases which may account for or be part of your disability. These sometimes crop up as the disease progresses.

All of the legal stuff - social security, disability law, insurance, work comp, all of that comes into play depending upon the person.

We can help. God bless you.

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 it sounds too great, it is. Demands for cash only, unless the doctor’s reputation is very well known. Do your research.

Please do not copy this to anywhere else, copyrighted 2002-2010.
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Old 01-23-2011, 12:25 PM #2
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Anyone heard from Tam? Worried about her.
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Old 01-23-2011, 12:42 PM #3
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