[pianoplayer]

I saw my ortho today. He is certain I need a redo of my ulnar nerve transposition. He said it won't help my shoulder, but he thinks if I wait too long I will lose the feeling in my hand permanently, and he can see that my fingers are beginning to curl.

We discussed TOS and he doesn't feel that TOS surgery is safe or effective. I told him I'd read that in a double crush situation, freeing the nerve in the arm won't be as effective as freeing up both spots. He said this is true, but that he feels I can get relief with the redo. He made absolutely no guarantees, in fact he said that redos are less successful than original surgeries, but he feels I need it done to preserve what I have. I told him I'd think about it and let him know. He said waiting a month or two is not a problem, but waiting six months would be a problem.

He did say I should definitely do stretching exercises and posture exercises to help with the shoulder problems.

Opinions, anyone? (Yes, I know it's my decision, but I'm torn!)

Sue

[Jomar]

well..
my thoughts about any possible TOS surgery would be that you need to know exactly where and what kind of TOS you have.
So that would mean seeing some kind of TOS specialist, to pin point what is the specific problem areas for you.

TOS compressions can be caused by -
any of the scalene muscles
clavicle/top rib
pec minor
oversize bones/ligaments or other structural anomalies
scar tissue

you didn't have any extra cervical ribs, correct?
should show on MRI and xray but sometimes they have been missed if the aren't checked for.

and the compressions can be on a nerve or on artery or vein.


The dr recommending the ulnar redo isn't the one who did it the first time is he?? --if so second or third opinion.
And if not - if you are considering the redo - find the highest rated top surgeon skilled in the area to do it - not a time to let just any surgeon practice on you.

I guess I would want to know for sure what is causing the curling before undergoing a surgery redo at the elbow.

Sounds like you would benefit from the MRA test- I don't know if a CT or other test could show specifics like what would be needed to get that knowledge...

some of the others have had more of the those tests than I did, so maybe they can tell more about them.

[tshadow]

I like to gather as much information as I can, and then I make my decision.

I am not even close to being healed after my surgery. But the cause of my condition was the combo of bad ergonomics, horrible hours of overwork, and then something about my body that was susceptible to the TOS. It's totally nerve based, and I feel / felt the changes to my brain, literally. These TOS cases have some similarities, but then, we're all individual. So there's not a simple, here's what you do, path.

And also, with TOS, it's not ortho, so it's not like there was a bone spur that could be removed, or a torn ligament that could be repaired - as most ortho issues are simply fixing the body issue. With ortho problems usually (if not always?) you can SEE what is wrong and what needs to be fixed. Not so with TOS. This is all about the nerves - unless it is the vascular TOS where they can see the compression.

So when I had the TOS surgery, they were just removing the rib, etc., to "make room" for the nerves to heal themselves, have more room in the thoracic inlet / outlet, etc. Very INEXACT if you ask me. Feels like the Middle Ages frankly...gosh, out of all of the illnesses, this seems to be so poorly researched yet...although we've got a few special TOS docs who've dedicated their lives to this. But even they aren't even able to tell me with any certainty the exact nerves involved. They can't explain to me EXACTLY why I have RSD.

But ortho issues are different. Can your ortho doc show you exactly what it is he wants to fix? Do you understand it, see it, and have confidence that at least this aspect of your problems might be cured? That would go in my plus chart.

With the TOS surgery, I chose a surgeon out of Denver who does these almost every day, literally so many I can't imagine the total number. The docs Sanders, Brantigan and Annest have tens of people here who have had surgery by them, without severe complication. No complications in most who I've met - I just have read a few who had chest / lung complications as there is an issue of deflating the lung, moving the lung over and anesthesia. I guess what I'm saying, is that I personally have a lot of faith and trust in those three doctors in particular. Some people have been cured, and they don't come here anymore. I know of two off of the old board who had surgery by Brantigan and reported afterwards that they were back to a normal life, although not doing the same or as much work...and can you blame them as once you were cured, who would want to trigger it all over again?

If it were me, and it was / is, I flew myself to Denver and saw two of the docs.

There is a line of medical opinion that any surgery under the neck is wasting your time as the TOS will still keep the person "sick." But who's to say that is true for everyone? Again, I go to can you see what it is the ortho wants to fix?

Do you have time / resources to get to Denver and have some more consults just before you go through with this surgery?

[finz]

I would run, not walk, to another doctor.

I'm guessing that he thinks TOS surgery is neither safe or effective because he is not qualified to do it or knows little about TOS. As others pointed out in the other thread, TOS experts say that you have to do the top compression (the one closest to the nerve root ) first. If a TOS expert advises you do go forward with the ulnar surgery, I'd believe that it was the correct course of action. Your ortho can only offer you the ulnar surgery, of course he won't recommend the TOS surgery. From what I have read on here, the good TOS (usually vascular or thoracic ) surgeons aren't pushing the surgery,( unless it is a clear cut veinous issue) unless they really feel it is necessary.

It's kind of like, if you want to know what the best car is, read Consumer Reports. The Ford dealer (your ortho) is never going to send you to the Toyota dealership. The TOS expert is Consumer Reports....the only one who "gets it". He is not going to try to "sell" you on having TOS surgery, in fact he will send you to a PT to try to help you avoid surgery altogether.

Find a TOS expert.

[olecyn]

Any surgery creates scar tissue.
Since you have had one surgery before why "spot" treat it?
Get to the root of the problem.
But, you have to see the correct physician's and have the correct diagnostic work-up.

I have a local friend who has had numerous shoulder and elbow surgeries by an ORTHO and still has serious issues. She won't even think of going to a Neuro cause she likes her ortho and won't look beyond her nose of the actual condition. She just keeps having surgery after surgery. Some people, just as patient's just won't listen or choose not to.

Did you know 99.9% of ALL Carpal Tunnel Syndrome cases are actually caused from the cervical or thoracic area nerve compressions? It doesn't mean you don't have CTS it means the base of injury is from the one of the swamp areas that get compressed.

Get your self to an expert...
If it's bone, go to an ortho
If it's nerve, go to a Neurologist
If it's vascular, go to a Vascular surgeon

[pianoplayer]

Originally Posted by olecyn

Any surgery creates scar tissue.
Since you have had one surgery before why "spot" treat it?
Get to the root of the problem.
But, you have to see the correct physician's and have the correct diagnostic work-up.

Get your self to an expert...
If it's bone, go to an ortho
If it's nerve, go to a Neurologist
If it's vascular, go to a Vascular surgeon

Unfortunately, I am not in a position to go to Denver any time soon, so I have to rely on what I can find in my area. I'm not really sure where else I would go.

A bit of history:

First doc - my family doc who sent me for PT. Did that for three months, things got a little better, then seemed to stagnate. Family doc wanted me to see a pain management doc, but I wanted to find the cause of the pain.

Second doc - spine guy - said there was nothing wrong in the cervical area except normal arthritic changes. He ordered MRI of my neck and EMG testing.

Third doc - neurologist - EMG test showed extremely positive for nerve slowing at the elbow. I saw him several times and he ultimately sent me to

Fourth doc - shoulder/arm guy - sent me for shoulder MRI which was basically negative. X-ray showed bone spur on my shoulder. Had ulnar transposition (based upon EMG and tests in office) and arthroscopic shoulder surgery to remove bone spur and "look around". PT again for three months, and felt better, but not pain free.

One year after surgery, still with shoulder pain, sent to PT. Helped somewhat, but not the improvement I needed.

September of this year, ulnar symptoms returned and got progressively worse. Original surgeon sent me back to PT for 6 weeks, which made elbow and shoulder much worse. He felt that because of the time lapse since the first surgery, as well as office testing, that scar tissue was the cause of my symptoms. Sent me for second opinion, which was the same. He does feel that I also have TOS, but that it is the entrapment at the elbow that is causing numbness and curling of my fingers.

I tend to agree about the scar tissue, and should I have this second surgery, I would be vigilent about doing nerve glides as soon as possible. (This wasn't done in my second PT until the end of treatment, and it wasn't suggested that I continue it.)

I am trying to manage the TOS symptoms with changes in my physical posture, etc., as well as using Sharon Butler's program. I would be reluctant to have the TOS surgery, and feel that treating in this way is helpful.

Sue

[olecyn]

LET'S START FROM THE BEGINNING HERE...

1. I see up on the stickies there is NO reference for a TOS doc n Chicago.
Can anyone help Sue here?

2. I'm in California and after 8 years of this massive pain in the *** condition I finally found a doc by means of the good TOS patient's here.

3. Chicago has some FABULOUS hospital's and I'm sure great TOS docs as well. Get on the phone and start calling. Take the phone in bed, print out a sheet of Neurologist's in your immediate area. If they know of no one we'll find you one.

4. DO's have an enormous amount of education on TOS which MD's do NOT get any education unless they go into Neurology or Vascular studies. Most Ortho's DO NOT have education so they don't know how to treat it.

I would just hate to see you have another arm surgery of your condition is compressed somewhere else.

The scar tissue issue pertains to ALL surgeries. If you have a second one on your elbow your risking scar tissue build up. Keep this in mind. It's risky either way to work on the nerves. My new FAB doc here does NOT recommend me having another TOS surgery (I still have my ribs and scalenes) due to the CRPS and scar tissue build up and redo's after redo's. It took 2 years to diagnose me and I continued to work a year including over time with no doc ever telling me NO NO NO.

Everyone here is individual. Keep that in mind. Doesn't mean you have to have your ribs out. You just need an educated Neurologist and correct therapy to begin with. That's FAB you are doing your postural and Butler's exercises. Keep it up. The more you strengthen you core for posture, strengthen your traps and upper body the better off you will be. It doesn't mean go out and pick up weights and bands to strengthen. We TOSer's should not. Use Butler as an example and Feledenkrais.

[tshadow]

It took me approximately 12 different doctors until I got a firm, definite TOS type diagnosis. (This includes different "names" for neurogenic TOS such as brachial plexus neuritis, etc.)

With my newest pain mgt. doc, (he's currently my primary doc for this problem), he is my 30th doctor.

What does this mean to you?

Don't give up, keep on seeking a good doc until you find one (or more) that you feel are helping you.

[pianoplayer]

I definitely won't give up on getting treated for TOS, it's just that I'm terrified right now about losing the use of my right hand. I'm afraid if I do nothing until I find the right TOS treatment, I'll lose my ability to play.

I have a friend at church who has total muscle wasting in her hand (from something else) and I showed her my hand today. She said it looks just like hers did.

Couldn't I have the ulnar redo and go to Denver in the summer?

Sue

[trixlynn]

If you have double crush from the TOS, the ulnar redo will not solve anything!
You will only place yourself in the position of possibly building up scar tissue, and potentially making things worse. I know things are scary, and I know a quick fix would be great, but this isn't it.
I was in a situation similar to yours. ( not the possibility of losing an art, but an income) I had to decide what was more important, the money from working or my health, and the use of my hands and arms.
Well, my hubby and I are trying very hard to care for a family of six on less that 4000 a month, when our mortgage is more than 2300 a month. I know a lot of you know exactly what I mean. But, we both decided if it came to a place that we had to sell our house it is okay. As long as I am obeying my doctors and my instincts, and not working.
Perhaps for you it could at least be temporary. Cancel one or two bookings, just long enough to get some testing. Send your info to Denver, and talk to the receptionist over the phone. They know what the doctors there need for tests. There are always ways to do something, if we just stop, and are still, and listen for that voice that speaks the options.
So, lol to wrap it up, in my opinion waiting six months on the TOS is potentially devestating.
I will pray that you find the answers you need.
Trix