[pianoplayer]

... in order for anyone to read/reply to my posts? Not too familiar with the protocol on forums, sorry if I offended by posting "out of turn".

I'm a professional pianist, injured in a car accident three years ago. Had ulnar nerve transposition and arthroscopic shoulder surgery two years ago. The shoulder pain never went away. Elbow pain has returned worse than before.

My doc now thinks I have TOS, and from what I've read it seems like a good diagnosis.

So, my question - if you have nerve entrapment in more than one place, can you need to get the nerve decompressed in both places at once? Should you?

thanks

[Jomar]

Hello,
Just making a quick post to bump this up at the moment.

But for the double crush - I think I would get some expert drs opinions and more tests before I have surgery for either compression.

I would try to figure out which was the most problematic and treat that one first and then see how things are at that point.

Have you had any expert or advanced PT or other therapies?
Bodywork, myofascial release, chiropractic adjustments - all by highly trained & skilled persons of course.

[tshadow]

You have probably seen my below post already, but if not, here goes.

As for multiple crushes, what I have been told is that we are not to have the lesser or lower orthopedic surgeries first, as the ultimate problem at the neck must be addressed first, or nothing can heal properly.

But, not everyone's doctors come to a TOS acknowledgement right away. It took my docs 1 1/2 years to diagnose me, and in that time, they did think I had an operable shoulder, but because I was having such strong RSD symptoms, I did not opt for the shoulder repair. I did opt, and had to fight work comp, for a brachial plexus surgery with rib removal and scalene removal. My scalenes are very deep and could not be fully removed. I am almost, well, am, bedridden by the TOS pain and multiple other areas it involves now. (I took Lyrica and it caused me to contract diabetes within three months time. Be careful of the so-called nerve drugs, not tested and used off-label.)

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 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.

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 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 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 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. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

[Bi-Coastal]

Oh Gosh,

I am sorry to hear you are having to deal with such a traumatic injury for a musician especially.

There are lots of posts on here regarding double and/or triple crush TOS.

In my case, an EMG verified that I had Carpal Tunnel Syndrome and that was all any Doc wanted to look at. Fortuneately, after a lot of attempts to have my cervical injury looked at as the cause of my many symptoms, TOS was suggested, investigated and diagnosed.

Now, even though I technically had CPS (or Ulnar Nerve Entrapment as some do), surgery on my wrist (or elbow), would not have been a solution. So many here have unnecessary surgeries when, in fact, the 'entrapment' is in the Thoracic Outlet.

I have posted before about my fabulous Rhuematologist, who, in his wisdom, tried the following:

1. He injected cortisone in my wrist to determine if that was the source of entrapment. There was NO improvement.

2. A few weeks later, he injected cortisone in my shoulder. My wrist pain totally disappeared for a few weeks.

Result: A simple, logical approach to determine that Carpal Tunnel surgery, would have been pointless. The 'double crush' was clearly a result of TOS.

You may consider suggesting this to your physician before any surgeries lower than your shoulder. Cortisone is not something you can tolerate routinely, so I was told I may want an injection if I were going on vacation or some such thing. I have not had any more injections, but then again, I have not messed with my wrist. As a musician, I am sure you would prefer not to have unnecessary surgeries on your elbow, or wrist.

I hope you find some answers and relief in the New Year. Music is not only a profession, but a therapy, No??

Warmly,
Anne

[pianoplayer]

Thank you, everyone, for your replies. I've had all the "usual" PT which helped until the strengthening exercises got too strong. Of course, I did not know this at the time, and went for the "no pain, no gain" course of things.

It was actually my last PT who suggested TOS, as everything that was done made things so much worse. I've read up to page 15 of this forum, and I'm really confused about how to find people who know what they are doing. Then there's the problem of finding the time to fit all this in.

This time of year, I work 10-15 hours a day, every day, and have small windows of free time. It's a horrible circle of damage - I need to work to make money, but working makes the pain and numbness worse and also leaves me no time to either investigate and obtain treatment, or to rest from the injuries. I don't even know where to begin to find out about cranio-sacral or myo-fascial stuf!

And yes, music is not only my work but my therapy, as well as WHO I am.

[MelissaB.]

Hi, just wanted to let you know that there are other musicians here with you. Although I do not play the flute professionally, I am a band director and did major on flute in college with TOS. I hope so much that you will be able to find some relief and be able to continue your music. Good luck!

[Jomar]

Sharon Butlers self care program would be a good home care thing for you to use, and at work to for those pockets of time. Her book is in most libraries too.
www.selfcare4rsi.com

I used portions of her TOS program to offset the uses at work -during breaks and lunch time -when I was still working & it is still one of my basic home care things that I use when I feel I need it.

She also talks about doing "opposite" positions and stretches too in some of older posts that I have read on other sites.

[pianoplayer]

Thanks! I just ordered Sharon Butler's Thoracic Outlet self care program. I'm willing to try anything!

Today has been an especially bad day for pain. It's not that I can't function, it's just so annoying - that funny bone feeling in my armpit and elbow. Can't find a comfortable position. It just occured to me that I had choir practice last night, and had to quit before an hour was up because I was going numb. I play, I pay - literally!

I've been mainly on vacation for the past two weeks - not looking forward to returning to more than full time on Monday.

Sue

[Jomar]

There also might be some musician focused therapy specialists...
But I would like to suggest if at all possible try to scale back {musician humor LOL} on any excess uses.
If you keep pushing thru pain and numbness you may get to a point of no return.

I had to stop all but the basic uses for awhile, for a month or 2, but I think it was a good thing for me. I was able to respond to the PT, chiro, and all the self care stuff I tried along with plenty of rest & relaxation.

[richard d]

Originally Posted by pianoplayer

Thanks! I just ordered Sharon Butler's Thoracic Outlet self care program. I'm willing to try anything!

Today has been an especially bad day for pain. It's not that I can't function, it's just so annoying - that funny bone feeling in my armpit and elbow. Can't find a comfortable position. It just occured to me that I had choir practice last night, and had to quit before an hour was up because I was going numb. I play, I pay - literally!

I've been mainly on vacation for the past two weeks - not looking forward to returning to more than full time on Monday.

Sue

Where do you live , people might be able to steer you in the right direction if they had some idea, kind of basic huh!