[dabbo]

Ok Y'all - i went to see my neurosurgeon today - he told me all of the tests were normal. From what i've read tho, tests aren't always going to be abnormal. one thing he did was the Adson's Test - I turn my head to the right, my left hand is normal. Turn my head the other way- owwww - and the pulse decreases (i think). I believe he mentioned to the vascular/thoracic doctor about possible vasular TOS. is that treated anydifferently? i'm still learning. I'll leave ya'll with a quote that i really like - maybe they'll put it on my gravestone in a LONG time.
"Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways – beer in one hand, whiskey in the other, body thoroughly used up, totally worn out, and screaming “HELL YEAH, WHAT A RIDE!!!”

[johannakat]

My orthorpedic described my adsons test this way- no head turning was neccessary to get these results.

right side: 12/10 on a scale of 1-10 (pulse disappears instantaneously)
left side: 8/10 on same scale. (pulse disappears quickly)

Later the neurologist confirmed that description in his office, and when he did ultrasound investigations of the area my neurologist found that my circulation was completely cut off by the time my arm was level with my shoulder. He said normally the arms should have to be straight up in the air to see that.

What other tests did your neurologist do? I think a few of the doctors have very specialized tests. At UCLA they do a MRI/MRA with contrast, and someone mentioned a circular mri that they had done in colorado? I don't rememebr what the real name was. I am bad with vocabulary.

As for different doctors and treatmnets, I think the idea is the same in both cases- there is compression, you need to find a way to release it. It becomes a matter of whats being compressed- nerves, arteries, veins, or both...I think they are treated similarly- open up thoracic cavity to reduce compression. Different precautions can be required for nerve compression vs vascular compression.

I would be interested to hear how anyone elses adsons test went...I still don't have a very good feel for how bad mine is relative to others. I am pretty bummed to continue to feel worse, not better, even with various treatments.

Talk to you all soon
Johanna


PS, I am no medical professional...jsut an engineer who reads a lot. Don't take my ramblings any more seriously than that.

[Jomar]

I even experimented with the pulse monitor on my treadmill.
it comes off the machine on the left so that's the side where I usually clip it onto my finger.
I tried it on all my fingers and then moved my arms to various positions of out and up. Just to see what would happen.

As soon as I got my arm at about 90 degrees out from my body the thing quit pulsing and I did it many times , to confirm - the same places every time.
The sides varied a little bit as my Left is worse than the Right side.

[watsonsh]

I had bilateral TOS and lost pulse on both sides. But I have spent the last 9 months + working with a PT that specializes in TOS and when I went back to the doc my pulse had gotten stronger on both sides and was not lost with the adson's test.

It took a lot of body work but my PT was great. Still have a lot of burning pain but am having nerve release surgery tomorrow (little scared) but hoping to come out even better on the other side.

Shelley

[astern]

Best of luck with the nerve release Shelley!!! Hope you get excellent results.

Keep us posted,
Anne

[johannakat]

Hey Shelly- I am a day late to ask this, probably, but what PT were you going to? I am looking for a good one.

Johanna

[Caryn]

Hi, I had zero pulse in right arm, Doctors said it was like having mini heart attacks in my arm and left untreated, my arm would eventually give up, and once your arm turns black... thats it. I am having so many problems since surgery, but I have a good pulse there.

[dabbo]

Shelley - I hope your surgery went well. My PT has had me doing stretches, cardio, and light weights. I was amazed how much better i felt about myself after a good cardio workout. (not w/o side-effects tho). What did your pt have you doing? I ask because I'm trying to avoid surgery, and this seems to be an integral part of that.

[tshadow]

Here's what I used to post all of the time:

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 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 condition.

[watsonsh]

Hi all,

I am back from surgery and feeling better. Have apin and swelling. They just put me on a short course of steroids (yuch I hate those)

My PT is named Joyce Wilkinson. HSe is in Santa Monica. Apparently one of only 12 specially trained TOS PT's in Cali. We worked for 8 months, certainly longer than my insurance and regular doc thought it was worth it (I fought both and they continue to pay for PT one year later) She did a lot of body work manually my moving my ribs around and retraining muscles and ultrasooiund. We got back to 80-85% rotation ability. Then she moved to working with her and a trainer that works side by side with them in the PT office, private sessions. We started slow on cardio and light strengthening.

I would hurt the day I did it but the next couple days were always better and I felt stronger and able to carry my body better. My posture greatly imporved to the point where the surgeons nurse commented on my great posture and range of motion.

Joyce was a life saver for me. Here number is 310-392-8274 for those interested.

I am back at work but taking it slow and being careful. Also doing hyperbaric O2 treatments to help with nerve and wound healing. I'll try anything :-).

Tshadow...so interesting on the thyroid issues because I am Hashi's dx. But as my TOS improved my thryoid normalized to where I am off the thryoid meds. I did a lot of reading that the C8 nerve if hurt or damaged and not sending the right messages to the thryoid can be an underlying cause of Thyroid problems. I will probably always have thryoid problems now and it may have always been underlying but TOS certainly aggravated.

Hope that helps.

Glad to be back. Happy Holidays!
SHelley