Guess I have to introduce myself...
 

... 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

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.

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.

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

Thanks!
 

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.

Flute Player
 

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!

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.

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

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.

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

Hi pianoplayer,

I think the ulnar and shoulder pain have returned because you went back to the same occupation. Who could blame you though, doing what you love. My daughter is a singer and dancer so I know the passion performers have for their work. I also agree with Jo that maybe you should try to cut down for a while so as to use the time to get through this flare. All the PTs kepot wanting me to strengthen my shoulder girdle with those nasty bands. That's where I drew the line and refused. Then I started water therapy. A little easier to try to strengthen the shoulder in water. I've had all the surgeries for cubital tunnel, tennis elbow, radial nerve release, carpal tunnel release, all this right and left, sometimes three procedures in one surgery. and ONE ribresection on the left of which I say I will never do the right side-I'll cut it off first...They sent me home on the same day!!!!

The exercises you learn with a good PT you will need to do for life as one surgeon said. I've slacked off lately and I can tell a difference. But I'm looking for a job now through WC one where I will most likely end up having the whole parade of symptoms and surgeries return, they just don't get it.

Anyway, sorry to ramble, wish you good luck in your recovery.

Sandy

By looking back at your posts again, I just had a thought about maybe you could put a pillow in your lap to sort of balance your hands to try and avoid pain. I know it helps me in driving.

Hi Sue, I agree with Sandy, I have used a pillow for my arm while driving long distances. My problem is raising my arm over my head. Best of luck. It is difficult to change your actions especially when it is your career and, as you said, who you are. Maybe you can modify it in some way. Keep writing to keep everyon updated. Linda

Jo - I always loved scales... I took most of the summer off, only playing on Sundays. I did feel better, but as soon as I went back in the fall, things got increasingly worse.

For the next two months I have gigs that I cannot give up. One, because I need the money and two, because if I stop playing people won't call me the next time.

Richard - I live in the Chicago suburbs.

Sue

Sue you need a diagnosis from a competent doctor very familiar with this condition, nothing less, if you are afflicted with this condition and ignore it and try to play through the pain it will most likely get progressively worse.If is caught early enough the chances for a positive outcome greatly increase.There are people here who a few years ago were playing tennis and running in marathons who cannot wash the dishes or in some cases lift a fork without paying a severe price hours later, please find a competent doctor who can make a diagnosis one way or the other and do not rely on the family physician well intentioned though he may be.

I Googled - musician focused rsi specialists
the link to the result list-
http://www.google.com/search?hl=en&c...ts&btnG=Search
http://eeshop.unl.edu/music.html
http://www.musicianshealth.com/whyrsi.htm

sadly it won't go away by ignoring it- we don't want you to go too far or too long in pain.

Thanks for the links - kind of scary!

So far (since Monday!) I've been doing alright. I've changed my playing position in the last few months so that when I'm at my own keyboard I play standing with the keyboard about hip high. It has helped in that I'm not holding my arms out in front of me. Yesterday and today, whenever my little finger started to tingle I stopped using it.

My plan is to try Sharon Butler's program during my breaks to see if I can hold off the pain through a day. I see my ortho on the 22nd and will see what he has to say. He feels that my elbow is hurting worse because of adhesions from the first surgery, and wants to redo it, wrapping and burying the nerve. I'm thinking if I can control the TOS aspect with some sort of non-surgical program, a redo of the elbow might have a chance. No time for any type of surgery until April, tho - too much money to be made in the next few months.

If I can't control the TOS symptoms on my own, I may be looking at a trip to Denver and Dr. Sanders.

Thanks, all, for your words of wisdom and encouragement!

Sue:grouphug:

Dear Sue,

Quote:

Quote: I have to say the fact that you are a musician, does make the situation more complex. And the interesting fact that you got your TOS from an accident / auto, instead of the more common way of repetitive hand / arm movements via your instrument or computer, this adds another unique aspect. First, I would make sure the outside of playing, that your hands / arm are protected. For computer work, or any kind of written communication, you can get Dragon Naturally Speaking and a headset and within one day it gets used to your voice and you will be surprised at how easily and fast it picks it all up. I HATE gadgets, yet I learned it and it learned my voice in one day. (After I left my law firm, 200 attorneys now HAVE to use it, that's how sure they were that I got TOS from my computer.) Next, I am having some legal questions. Are you an employee? Because if you are, this situation is now where you are self-modifying your job. That is evidence of a job injury, because although it started out as a non-job accident, (unless you were driving to / from your job itself, then it is a full job injury due to the nature of the trip), then you have a hybrid case where your employment has had some effect on your injury of making it worse. Each state and even county treats these differently, but the basic rule is some level of compensation for the loss of potential job market (PD) and present medical care, including temporary disability which cannot be apportioned. (The PD can be apportioned according to the judge's idea of how much is work caused vs. work exacerbated.) So I'm looking down the line, and need you to consider getting a FREE legal consult from an attorney of work comp, experienced fully in this area, to tell you what your rights and responsibilities are. OK, let's say you are an independent contractor. Then, there are still issues of state disability for the periods when / if you go into for surgery, or have periods where you medically can't work. So an SSDI attorney would be the one for the FREE consult there. And you didn't say if you were ALONE in that accident, at fault, etc. If you were in a collision with another car, then you need an appt. with a personal injury attorney, because if you were not at fault, (or even in you were and had your own medical coverage), then you need to discuss issues of compensation for loss of your use of your hands which are your livelihood, and an anticipated amount of money that is carefully considered to be paid for what might happen in the future with you. Did I confuse you enough? If you want to talk, PM me, and when / if I feel good enough, I can try to talk to you about it. Besides the Butler take home program, I have heard that Edgelow, in Berkeley (he's on our lists) is an EXCELLENT take home program. Just because I couldn't do any PT, I heartily push and ask everyone else to try to be as active in their PT as possible, as these are the people who seem to do better. Welcome to our little family. Everyone here truly cares. God bless you on your healing path...Tam

this thing it totally acting crazy, unless it is me, the technitian!

Tam,

Thanks for the post.

I am an employee, but also an independent contractor. I'm employed by a church as an organist/choir director. Good salary, no benefits. I'm also employed by a school district as an accompanist. Crappy salary, pretty good health benefits. Independently, I don't make alot of money, but I do spend alot of time, and what I make goes for the fun things in life like my kids' college tuitions!

I was a passenger in my own car that was rear-ended. There is presently a lawsuit going on. However, I understand that I'm pretty much limited to the other driver's policy limits. The other driver is a college kid.

I do plan to make a trip to Denver one of these days, but the timing is the tough part of that. I think the best thing for me would be to go right about now so that if they did do surgery I'd have the rest of the school year plus the summer to recover, limiting the sick days used in my school job.

But, there are those other jobs -

The church really likes me to be around during the Easter season, and the choir sings through May. The church only gives me 6 weeks of Sundays off, although they were very good to me the last time I had surgery, and paid for a sub for me for much longer than that. I don't like to take advantage, tho!

I'm starting rehearsals in April for a musical that will run through the end of June. (I'm music directing) If I wait until then to have surgery, I'm sure I wouldn't be ready to go back to work at the school in August!

Sometimes the logistics of all this paralyze me!

Sue