[Bustrbyte]

My 30 YR old son has Been diagnosed with TOS by a reputable nerve specialist. The doctor is having him do therapy for TOS and wants to do cubital and carpal tunnel surgery on both arms. Surgery in shoulder would be done if the other failed. He has bounced around doctors and therapist for two years with no results. All nerve tests have been negative. He has been out of work for 8 months. This seems very radical to me. He has a bulging disc in the neck but all neurologists say that can't cause his symptoms, which most said were cubital tunnel systems. Any suggestions would be appreciated.

[Jomar]

TOS can cause those same nerves to get irritated too, and it's difficult to sort it out -but do-able by very good and expert TOS docs.

Have you been to a specialist on our list of drs? { should have said has he been to any }
some drs say they know TOS but not really experienced at dx and txing it.
http://neurotalk.psychcentral.com/thread135.html

There is specific MRI/MRA tests that can help to pin point where the trouble is.
I hate to see him get these elbow and wrist surgeries just as a "maybe" fix.

It is possible that he has a triple crush syndrome also, but I would make sure that the cause is clear before having any surgery - one big reason is possible scar tissue build up afterward.

I hope he has had clear xrays and MRIs to check for extra cervical ribs as well as any other anomalies in structures.

useful TOS info-
http://neurotalk.psychcentral.com/thread84.html

If you can list the tests he's had already and maybe his most bothersome symptoms, we might be able to give you more detailed suggestions.
What is his avg daily pain level?

We have many threads on PT - good and bad - there are some great videos in the useful sticky showing PT, Triggerpoint, chiro adjustments ...

[watsonsh]

Just a thought. Even though they say that bulging disc is not causing some of the problems it could be.

I have a minor disc bulge and nothing shows on my MRI. THe EMG showed another story. So they had me do x-rays with my head flexed in different positions and found what they called a subluxation. That and the TOS contibute to my pain.

[astern]

I'm confused. if TOS is the diagnosis, why would they want to do cubital and carpal tunnel surgery? Wouldn't the compression be in the thoracic outlet area?

[Bustrbyte]

Thanks JO55. My son said he would reply when he is able to type. Computing is hard for him.

[Jomar]

We all know what computer time and typing does to us
If he's not able to type much right now - just reading thru the other threads and stickys will give you both a good overview.

He'll see things and go "oh yeah! I get this feeling too..."

[finz]

Look up posts by pianoplayer. She had similar issues/plan by MD. There were some specific links in one of those threads that explain in cases of suspected double or triple crush syndromes the surgeries should always be done from the top (closest to spinal cord) down. Carpal tunnel might not be the problem....that nerve is affected by TOS, so the only compression might be the top one. In that case, 1 surgery might do the trick instead of 3.

[Bi-Coastal]

Well, OK

I have posted this story a few times over the years (10+), but this post suggests it bears repeating.

Electrodiagnostic tests prove 'technically' that I have Carpal Tunnel Syndrome in both wrists. My wise Rheumatologist performed a simple, logical test which clearly proved that I indeed had 'double-crush' TOS. This means Carpal Tunnel surgery would be a useless and very BAD idea.

The test was as follows:

1.) The Dr. injected cortisone in one of my wrists which did NOT result in any significant improvement.

2.) A few weeks later, the Dr. injected cortisone in the shoulder of the same arm. This resulted in a SIGNIFICANT, albeit temporary, improvement in my wrist.

Obviously, the impingement which diagnostically indicated CTS, was in my SHOULDER and NOT in my wrist.

I am always astounded at the number of TOS patients are put through unwarrented surgeries in the wrist and/or elbow before it is determined that the TOS is the culpret.

No surgery should be undertaken lightly. TOS patients are especially vulnerable to problems because CRPS/RSD is a real threat. In addition, regarding TOS surgery itself..if there is no cervical rib, or other obvious anomoly, the success rate is not great.

If scar tissue is the cause of TOS, surgery is extremely difficult to navigate without jepordizing nerves and arteries. In addition, scar tissue will often return with a vengence, setting up a cycle of more and more hazerdous future surgeries.

My theory is that the shortage of TOS specialists has something to do with the low success rate of TOS surgeries. This impacts the 'reputation' of the surgeon and also increases the potential of lawsuits for 'failed' surgery...not a pleasant prospect.

Ask your physician about trying the 'cortisone' test. If he/she is not interested, find someone who will be. SOME surgeons will suggest surgery even if it is not in the best interest of the patient. A Rhuematologist really must be consulted anyway. They can rule out several other conditions which are so frequently mimiced by TOS.

Take Care,
Anne

[Jomar]

Thank you for posting that info- i had totally forgot about that kind of diagnosis help..

I also wonder what kind of work the son did or does?

[Bustrbyte]

I also wonder what kind of work the son did or does?[/QUOTE]


He is an engineer and computer work and just holding papers keeps him from working. He is trying to get it covered on workers comp. Would you call this a work related?