i posted before about my son and tos as a possible diagnosis. i still do not know what he is suppose to do first.
do pt?
or see another doc?
or get an emg?
should he stop pt? i went with him and they seem knowledgable
body work?
what kind?
or????
what about the sticky note about the place in yorba linda? has anyone gone there?
is there anyone on this board that has their tos under control without surgery and can do some activie things? or at 23 is this it?
does surgery ever work?
is it worth it?
i really hope that someone will help direct me. the ortho sent him to pt which he is doing. we live in so cal. i told him about ucla doc.
thanks for more info again
a list of to do's would be great.
if he needs to go to san fran or order those tapes that is okay too, whatever it takes, but i do not want to go all over the place crazy.
steff

Hi just thinking here if you only have a possible diagnosis i would see another doctor till you have a defiant answer. I was told by one doc i had tos and from there i did physio for 5 months until i seen my surgeon and then i saw one more for a second opinion for the surgeon. When i went back to the surgeon he stopped my physio because it was not working from there after along talk with him we agreed on surgery. Much later he sent me to message therapy which helped with the pain. As far a surgery only the person with tos can make that decision. From what i have read and i have read a lot its hard to say how many have a success from surgery because they don't seem to come back to any of the sights i have read. The only ones that stick around are the ones who are still in pain. It makes since one who feels good has a life to live and the ones who have to live in pain only have each other on these sights to talk to. I wish i could help you more but i can only tell you what happened to me.

I had the best luck by finding a expert /advanced PT
{this guy taught PT to others, he also was involved with ergo/workplace evaluations} and having an evaluation by him - cost to myself was 100.00.

That guy did the best overall & complete assessment of my symptoms, injury history, posture and physical testing that any of the prior various MDs had ever done.
The second best help was another advanced PT that worked in a phys rehab with a physiatrist - the PT was more help than the dr. {the PT did the testing/eval for TOS - dr didn't do a thing}

I agree with the advice the other CA TOSers gave - he needs to make the appt with Dr Jordan and see him, then Dr Jordan will guide him as far as PT and other treatment. There are very few PT's who understand TOS, and doing the WRONG kind of PT can make him much worse, much like swimming did. No strength training, no weights, or therabands, or handbikes, etc. I wd advise maybe massage, gentle stretches (esp. trying to loosen the pec area - but GENTLE), ultrasound or hot towels on those tight muscle area, but otherwise, the nerves are irritated and further exercise is likely to increase, not lessen the problem.

Relaxing in a heated pool or hot tub (limit time in hot tub) may bring pain down.

But he needs to get in and see Dr Jordan - let him know he's REALLY lucky to have a top Dr that close. I flew from IL to PA for a consult and dx!!!

Best wishes, and be sure and let us know how the appt turns out!
beth

First, I am VERY sorry your son has come down with this condition. My mother's toughest battle is that she can't cure me. She often says in frustration, "you just don't want to get well..." So now (I'm 48) I've made a deal that she and I are not to talk about my illness anymore, just about other things, as I have seen 28 doctors and I am capable of managing my own care. I also have in-home care.

I don't know what tests your son has completed, but in my opinion, he should complete all tests to rule out other problems and not just assume it is only TOS or that there are no other issues going on.

TOS is a rare condition, and there are different "types" of TOS, and even more confusing, everyone I've met (about 20 now) each is quite different in our own pain and limitations on what we can do. Our surgery outcomes have been different. The men are few, but seem to have better outcomes in surgery, and that's just from the three I've talked to.

NEVER have him do any PT that hurts him. That's again my opinion, and what I've been told from the top PT specialists. This is not an orthopedic condition, but a neurological (brain nerves) condition, so "no pain no gain" is not the key. Work hardening is not the key, as the nerves must not get inflamed or swell - that's counterproductive.

My surgery by Dr. Annest in Denver was a breeze (except for a med problem unrelated to him, caused by work comp) and I was freed from constant headaches, RSD and rec'd better circulation. The high pain and disability did not change though. This was expected, as I am usually bedridden.

Anyways, here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet 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 as a whole. 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 to rule out MS or other copycat conditions.

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.) or CTs By Dr. Collins and or Dr. Brantigan 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 ho 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 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, 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 co