[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, and thoracic spine, 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. Vascular Surgeons are the docs who do the most “rib removal” surgeries (rib resections, with or without scalenectomies and other surgeries.) Neuro surgeons, or sometimes cervical orthopedic surgeons also do the surgery, but these are very, very rare and should be considered very carefully. The reason I chose Dr. Annest of St. Luke’s Presbyterian is because they do these surgeries almost every day.

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. Why? Because the EMGs weren’t made to detect TOS, but it can rule out TOS. 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 can involve cut-downs along the arm to track blood flow or in an I.V., 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. Otherwise, MRIs are painless, and discuss if you have an claustrophobia. They have help for that.

7. 3d MRAs and C.Ts. give another vision. CTs have very high radiation, and should not be repeated except for good reason, and you have a right to say “no” because of the radiation. Discuss this with the doctor, some newer models have far less radiation. MRAs by Dr. Collins and Dr. Brantigan are considered the best and 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. However, most docs will not look at their reports because the other docs just don’t “see” what the two docs do. (I think the cost at UCLA is $17,000 right now and some insurances cover.) IF you can go, do so, as Dr. Collins explains everything to you. Although I couldn’t get my w/c to do one, Dr. Collins spent an hour with me discussing the TOS issues.

8. Scalene block – this is the Cadillac of tests for neuro TOS because if you feel relief for a brief period of time, this is the MOST positive indication of the injury and outcome 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!"

With all surgeries for us, RSD or CRPS can be triggered. My horrific RSD actually went into remission – Dr. Annest thinks that with better circulation the body was able to heal the RSD. But I have to keep taking Ativan to keep my RSD at bay.

We have a ton of articles posted on the upper left hand corner. You can hit the button to research, to answer most answers, or put in my name tshadow and ask for all of the threads I started to kind of pin down basic symptoms and dealt with changing symptoms also.

There are a couple of “usual” conditions which go hand-in-hand with TOS; they include R.S.D. or C.R.P.S., fibromyalgia and autonomic neuropathy, as well as treatment for depression to handle the differing phases of ones’ life if TOS is determined to be present. Be sure If you are on medication, that you post here to see what side effects we’ve had. If you look up these conditions, some of your symptoms may finally make sense to you!

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, doctors are just afraid to say “I haven’t seen it and I don’t know”, 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." Now I’ve seen 36 doctors plus been worked up by a major hospital and have a pain mgt. doc. NONE had ever seen TOS and did not believe the level of pain, or, “why are you bedridden 90* of your day?”

Pain control is another big fight. YOU MUST have a pain doc. Most of us – not all, but most, are on oxycontin, fentanyl, Opana, Xanax or Atavil

Be very wary of chiropractors who say they can "cure" TOS. Or webites that ask for money or donations. 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 leads to more nerve crushing, 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. Dr. Ellis (who refers TOSers out to Edgelow) spoke to me for an hour (as I live so far) and was highly knowledgeable and kind.

Getting a FREE work comp consultation is of the highest importance because if one considers what one does the most, it is usually working. Unless you KNOW your TOS was caused by an accident, or impinging rib that has been bothering you since birth, and if you have a good work history, as you try to figure out how you got TOS, even if you are not yet diagnosed, you must cover your bases by filing a work comp claim form after a good free consultation. 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. If you might be work comp, you MUST have an attorney. This is NOT a do-it-yourself system. Period!!!

If you are sick or going to be sick through one year, or more, you should also have a free Social Security atty consult and follow through with those filings as the attorney suggests. It is usually NOT successful to do it yourself, especially if you get denied.

I also suggest that after six months of absence from work, sending a certified mail receipt requested letter demanding identifications of any / all benefits for anyone disabled fully or partially from your company and to take any response to a licensed disability or insurance attorney. It was doing this that I discovered I had long term insurance and a life insurance policy already paid.
Copyright 02-03 through 2-2010

[tshadow]

I would add to this the importance of using topical aids along with our meds.

I have about 12 meds, but use them for different pains - there is an anxiety based pain, where my muscles tremble; there are head pains where fioricet is the only thing that works; there are two sleep aids that I hardly ever use but have when I haven't slept for more than 3 days; then I have two breakaway pain relievers; and then my baseline pain; the power shake, and the topicals.

If I can't eat at least eat "Glucerna" so meds are not on an empty stomach.

If your eyes become blurry (like with Lyrica) quickly get a blood test as this could be high blood sugar - diabetes - which I got from Cymbalta and Lyrica I believe.

The power shake contains:
FLAX SEED OIL - the BEST source for omega 3s
OJ - Ice - Protein powder based on whey and rice (watch out for sugar, corn syrup or solids)
(banana, any berry or fruit you like)
Regular old oat meal (not too much)
Wheat germ (again, not too much, it will end up like sludge, so go 1/2 tsp. at a time until you get the amounts you like) Also wheat germ is great added to tuna salad (which I don't eat tuna because of mercury, I prefer vegetarian salad with tomatoes, celery, lettuce, lemon, Hollywood mayonnaise and even a few raisins)
raw walnuts, or pecans or almonds (again, go light)

VITAMINTS YOU NEED:
Aloe for digestion
Milk Thistle

And our bodies eat up Vitamin D. Have doctors check blood for Vitamin D, as I was shocked to find I haven't had any for 7years when I looked at my own records!

Chondroitin and Glucosamine

ALL of the B vitamins

[tshadow]

A Kick Up For New Friends

[Vman]

How do I access the list on the upper left hand corner? I do not see anything there.

[Jomar]

I think she is talking about the sticky threads up at the top of the TOS main page threads list.

Possibly also the "search this forum" tool that is up on the right side of the main TOS page.

[tshadow]

Last Friday, 9/30/2011, the Dr. Oz show said they would do a highly critical show that:

DOCTORS ARE NOT TRAINED IN THE FACT THAT CHRONIC PAIN IS A SEPARATE INJURY!!!

I have tried to express this so many times - if you have a car accident, and your broken arm is fixed and no longer hurts, you only needed a short, perhaps "light" type of pain relief. BUT, if for some reason the car accident, (or workman's comp accident), caused you to have pain longer, and longer, and longer and in different parts of body, the CHRONIC PAIN is now it's own injury, compensable by LAW.

Many of us got neuro TOS, then we got RSD (the hot red skin on fire), then we got deep muscle pain all over our body - (that could be fibromyalgia, or an immune response, like myastonia gravis), the chronic pain model must be addressed.

It is my opinion that the body MUST receive enough pain relief, OR, the pain itself can cause suicide, and other problems mentally. And, if you give your body ENOUGH pain relief, for LONG enough, hopefully the pain meter will go down, and maybe in a few years you can actually go without pain meds everyday, and use other modes of health. (Swim, chiros or phys. experts who know how to gently take the pain away, etc.)

So this is my new soap box - and I am thankful that Dr. Oz recognizes that addiction is NOT the same as physical reliance - that you might build a tolerance to a med and have to switch out to another, etc. Over the years, my base pain med has been switched out (not raised necessarily) at least 6 times. And it's necessary because the pain pathways grow accustomed to the med, so we start a new one, even on a much lower dose, and because it's new, my brain gets a great pain relief from "tricking" the nerves.

The injury has been a hard battle - I think I've seen 60 doctors, and only 4 have understood pain relief. It's not psychosomatic. The depression came AFTER the illness - not before. I am not in it for money - everyone knows I made a LOT of money at the point of injury. So that leaves THE TRUTH.

God bless you.

[tshadow]

For New Joiner

[tshadow]

Bump up for new users.

Include in your research, RSD and myasthenia gravis.

Also, in this section, research pain management teams. It gets very confusing when you have a work comp pain mgt. team, which all must know eachother's medicines, and, medicare teams, and the theory that you can not refuse to treat pain because it comes from two different sites. Treatment cannot be divisible nor refused by work comp or Medicare - they have to go to court to have apportionment decided, I think.

God bless.