Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 02-02-2008, 05:49 PM #1
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It looks like KLS had many imaging tests - I don't know if they imaged the C spine for sure - but that should be one of the first things to check I would think.
The physiatrist ordered MRI & xrays of T & C spine for me - to be sure C spine is not causing the arm problems.

Question -
I guess this is one thing I'm not 100 sure of -
if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??
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Old 02-02-2008, 07:33 PM #2
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It looks like KLS had many imaging tests - I don't know if they imaged the C spine for sure - but that should be one of the first things to check I would think.
The physiatrist ordered MRI & xrays of T & C spine for me - to be sure C spine is not causing the arm problems.

Question -
I guess this is one thing I'm not 100 sure of -
if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??
Yes, they imaged the C-spine (twice) and no problems were detected there either.
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Old 02-02-2008, 10:03 PM #3
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I am confused.

I have TOS. No question. But, I do not have any reaction to the holding your arm in the air thing - I have a pulse when my arm is in the air. I can also do the test where you open and close your hands over and over.

So just because these two tests are not reactive in me, is everyone saying then that the person doesn't have TOS?

I am confused by these postings...is anyone else?

Last edited by tshadow; 02-03-2008 at 06:33 AM. Reason: I watched a German movie tonight and my grammar has gone outz za veendow unt downz ze gahbage hall - hole!!!
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Old 02-02-2008, 10:13 PM #4
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ALso, as far as traveling to Denver:

If one has a good work comp attorney and local primary doctor, you can set up the foundation that for diagnosis you need to travel to Denver to get your diagnosis, surgical consult and even surgery - all paid for by work comp. There are people here including myself who had it done this way.

The first steps are getting a good attorney who deals with upper extremity repetitive injuries - you mentioned TTD checks so I'm assuming you've filed a work comp claim -

and we have a list of good TOS docs, Denver is not the only choice. It became the only choice for me because no one was able to diagnose me, I went to 10 or 12 (can't remember now) very good doctors and they all said that it could be TOS they just didn't know for sure. PT was failing. So there are procedures that the doctors can follow in work comp to set a foundation for a person to ask for and get a consult from an expert out of town or out of state.

If someone doesn't have any insurance or work comp, there are charitable organizations such as AngelsWings who, if you post here, will usually answer, or you can do an advanced search.

As for flying to Denver, if you make a post that you need help on flights for Denver there are people here who can PM you on services that are charitable and I believe free.

As for the doctors, if you call to arrange the consult and explain that you are doing it on your cash only, and that you are financially strapped, the doctors in Denver (and the others we've listed) are very compassionate and I know some have charged nothing and others have charged very little. If they know you're flying in and out in one day, you send them all of your medical records (on this injury) ahead of time, and they may say they are going to do an MRI or an EMG while you're there, and that they will seek payment through your work comp only, and they get all of that done while you're there that one day.

So this is how some of us have gotten our diagnoses. And TOS includes all sorts of diagnoses - brachial plexus neuritis, and so on...

I don't know where you live, but the first step would be posting the general area and asking for the top docs in your area, and making sure you have hired a GREAT attorney for what lies ahead. I had to bring 3 hearings to get court orders to get my treatments and needs.

don't give up, keep on trying.

Last edited by tshadow; 02-03-2008 at 07:01 AM. Reason: As for the copied texts below, please see that I finished these later, so some important language has been changed
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Old 02-02-2008, 10:43 PM #5
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Tamara, i am as confused too. I have never lost my pulse, in any position, and while I can't do the open and close your hand thing, there are other "classic" TOS signs I don't have either.
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Old 02-02-2008, 10:49 PM #6
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Quote:
Originally Posted by tshadow View Post
ALso, as far as traveling to Denver:

If one has a good work comp attorney and local primary doctor, you can set up the foundation that for diagnosis you need to travel to Denver to get your diagnosis, surgical consult and even surgery - all paid for by work comp. There are people here including myself who had it done this way.

The first steps are getting a good attorney who deals with upper extremity repetitive injuries - you mentioned TTD checks so I'm assuming you've filed a work comp claim -

and we have a list of good TOS docs, Denver is not the only choice. It became the only choice for me because no one was able to diagnose me, I went to 10 or 12 (can't remember now) very good doctors and they all said that it could be TOS they just didn't know for sure. PT was failing.

As for flying to Denver, if you make a post that you need help on flights for Denver there are people here who can PM you on services that are charitable and I believe free.

As for the doctors, if you call to arrange the consult and explain that you are doing it on your cash only, and that you are financially strapped, the doctors in Denver (and the others we've listed) are very compassionate and I know some have charged nothing and others have charged very little. If they know you're flying in and out in one day, you send them all of your medical records (on this injury) ahead of time, and they may say they are going to do an MRI or an EMG while you're there, and that they will seek payment through your work comp only, and they get all of that done while you're there that one day.

So this is how some of us have gotten our diagnoses. And TOS includes all sorts of diagnoses - brachial plexus neuritis, and so on...

I don't know where you live, but the first step would be posting the general area and asking for the top docs in your area, and making sure you have hired a GREAT attorney for what lies ahead. I had to bring 3 hearings to get court orders to get my treatments and needs.

don't give up, keep on trying.
Thanks for the info!!! I'm going to definitely discuss this with my attorney! Right now he's telling me that because of TN law I'm not entitled to see another doctor at this point but maybe since my doctor is being pushed towards MMI that may be possible in the very near future to see someone else.
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Old 02-03-2008, 06:48 AM #7
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Originally Posted by KLS2007 View Post
Thanks for the info!!! I'm going to definitely discuss this with my attorney! Right now he's telling me that because of TN law I'm not entitled to see another doctor at this point but maybe since my doctor is being pushed towards MMI that may be possible in the very near future to see someone else.
In TN, do you not have rights to elect to change your primary treating physician at will? You can only pick on, and must stay with one until he releases you? And, would this doctor not discuss with you a way by which you could ask to see a top TOS doctor for just a consult, via a referral by this doctor, for a one-shot exam and consultation opinion report, that then your primary doc would incorporate into his reports and make certain decisions for your care?

Can you get a second opinion and say that you feel you are being railroaded to closing your case without the correct diagnosis?

I am not a practicing attorney anymore, but I vaguely remember that you would want to plan and execute this BEFORE you are made MMI (or P&Sd in CA.) Reason? MMI says that you're through. They've done all they can, and except for regular maintenance so to speak, this is your level and this is what can be expected. Well, if they haven't even got the diagnosis correct, then how can any of that be true?

So, can your attorney get you switched from that doctor you have, (or use him if he's malleable), to say, (and this is in your primary doctor's report by the way) "A brief short story about you and your injury. What the doc's testings have shown him. Then, we do not have doctors with the requisite level of expertise in TOS diagnostics in this area. I have questions lingering on f, g & I. We must go to X, W or Z cities to find a doctor who is an expert for this man to get an appropriate diagnosis, treatment plan and even possible surgical consult. Based on A, B, C & D testings and findings we have done, time if of the essence. I propose doc Joe, Bing and Boo, cities ... Then the doc addresses any opposing doc's opinions, if there are any." That report gets served around on everyone, there's a hearing, and the judge decides. Later, if one of the TOS top docs - and bring in our list to yoru doc to see our list of doctors - says you need surgery and what type, the doc writes a report, and your primary doc incorporates that report and the docs' opinion, IF he agrees. Usually they do. Usually docs truly respect eachother's work. It is the attorneys and adjusters who cause all of the muckety muck and confusion!!!

So then you might have to do a hearing all over again for the actual surgery.

But that's how it's done, I think maybe, just my imaginings here as I'm sure not giving legal advice.

But NO ONE can do this without an attorney from that area, and it is NOT a do-it-yourself system. I used an attorney, for my family I always used an attorney other than me. There are MANY reasons for that - you can get too distracted and emotional and forget!

And the laws change all of the time. That's why you must see a top attorney in your area. You don't want to do all of this work and have your reports not allowed in due to some technicality.

Good luck.

Last edited by tshadow; 02-03-2008 at 07:02 AM. Reason: This is probably more discussion than is needed, but. Also, each state, even counties can be so very different. Don't rely!
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Old 02-03-2008, 09:43 PM #8
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Quote:
Originally Posted by tshadow View Post
In TN, do you not have rights to elect to change your primary treating physician at will? You can only pick on, and must stay with one until he releases you? And, would this doctor not discuss with you a way by which you could ask to see a top TOS doctor for just a consult, via a referral by this doctor, for a one-shot exam and consultation opinion report, that then your primary doc would incorporate into his reports and make certain decisions for your care?

Can you get a second opinion and say that you feel you are being railroaded to closing your case without the correct diagnosis?

I am not a practicing attorney anymore, but I vaguely remember that you would want to plan and execute this BEFORE you are made MMI (or P&Sd in CA.) Reason? MMI says that you're through. They've done all they can, and except for regular maintenance so to speak, this is your level and this is what can be expected. Well, if they haven't even got the diagnosis correct, then how can any of that be true?

So, can your attorney get you switched from that doctor you have, (or use him if he's malleable), to say, (and this is in your primary doctor's report by the way) "A brief short story about you and your injury. What the doc's testings have shown him. Then, we do not have doctors with the requisite level of expertise in TOS diagnostics in this area. I have questions lingering on f, g & I. We must go to X, W or Z cities to find a doctor who is an expert for this man to get an appropriate diagnosis, treatment plan and even possible surgical consult. Based on A, B, C & D testings and findings we have done, time if of the essence. I propose doc Joe, Bing and Boo, cities ... Then the doc addresses any opposing doc's opinions, if there are any." That report gets served around on everyone, there's a hearing, and the judge decides. Later, if one of the TOS top docs - and bring in our list to yoru doc to see our list of doctors - says you need surgery and what type, the doc writes a report, and your primary doc incorporates that report and the docs' opinion, IF he agrees. Usually they do. Usually docs truly respect eachother's work. It is the attorneys and adjusters who cause all of the muckety muck and confusion!!!

So then you might have to do a hearing all over again for the actual surgery.

But that's how it's done, I think maybe, just my imaginings here as I'm sure not giving legal advice.

But NO ONE can do this without an attorney from that area, and it is NOT a do-it-yourself system. I used an attorney, for my family I always used an attorney other than me. There are MANY reasons for that - you can get too distracted and emotional and forget!

And the laws change all of the time. That's why you must see a top attorney in your area. You don't want to do all of this work and have your reports not allowed in due to some technicality.

Good luck.
In TN you have to choose a doctor from a list provided from your employer (in my case none of them would have been a place I would have chosen on my own). Unless that doctor refers a patient on to another doctor, the patient is stuck unless the employer agrees to provide another doctor. I do have an attorney but am not very happy with him as I don't think he's doing enough. I have a hard time getting any answers out of him. Once again you've brought up some good questions that I intend to ask my attorney! Thanks!!!
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Old 02-02-2008, 11:01 PM #9
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I am confused.

I have TOS. No question. But, I do not have any reaction to the holding your arm in the air thing - I have a pulse when my arm is in the air. I can also do the test where you open and close your hands over and over.

So just because these two tests are reactive, is everyone saying then that the person doesn't have TOS?

I am confused by these postings...is anyone else?
From all I've read, I don't think TOS can be diagnosed without taking into consideration all symptoms and ruling out everything else. Just because you don't have positive reactions to just those two tests, I wouldn't think that would mean a negative diagnosis of TOS, it's the BIG picture that counts. It's also my understanding that TOS encompasses compression in several places and the symptoms would depend on exactly where the compression is and the severity of the compression....ie.....how much of the nerve or blood vessel is being pinched, how long it's been going on, the extent of permanent damage. But then by no means am I doctor and I'm fairly new to all this so that's just my thoughts on the subject.
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Old 02-02-2008, 11:09 PM #10
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Quote:
Originally Posted by Jo55 View Post
Question -
I guess this is one thing I'm not 100 sure of -
if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??
I was just wondering because of what gizmogirl said.
From all I've read loss of pulse can be an indicator - but doesn't prove or disprove TOS all by itself.

[At one point, I thought I might have TOS. I did the test where you take your pulse when your arm is down, and then take it when your arm is up in the air. Neither I nor my husband could even find a pulse when it was up in the air. I also had visually obvious circulatory insufficiency to my hand (mottled), hand always cold, easily spasmed, sensitized, and spasms so bad on that side of the neck and shoulder that I would get headaches and visually obvious atrophy. My neurologist moved my arm into the air and said after about 2 seconds, "Your pulse is fine. You definitely don't have TOS". She was right. I asked her if there were tests that could confirm it, and she said yes but suggested I save my $$]
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