As I know nothing about the MRA/MRI/MRV, I can't address that, but FWIW, I was told by Dr. Sanders that he would never base a surgical decision on an EMG/NCV, as they can vary from day to day. (This was even referring to the neurologist he uses, who does a specialized TOS-specific testing procedure.) A neurosurgeon recently told me that they are only helpful when they are positive (IOW, a neg. test doesn't mean much...)

I don't know if a couple of you skimmed my post - because a couple are just not "getting" it.

If one is in work comp, fighting a private disability insurance policy, or fighting for social security, you must have EVIDENCE.

It is NOT enough for one neuro to say, without any testing, that you have TOS.

Likewise, you don't want to pin yourself down to TOS, and then get examined and tested by a defense doctor, only to have them find an internal cancerous tumor at the base of your neck, and conclude you do not have TOS and thereby chuck your whole case. The tests are for PRECLUDING OR RULING OUT certain possibilities.

Of course TOS is not seen on a BLOOD TEST! But a lot of rheumatological and immunilogical diseases like RA, which can mimic TOS, are. And if you have a mixed condition / disease case, you need to know it.

This list is posted as a generalized yet comprehensive testing regimen in effect to block out as many medical errors and help one get to a proper diagnosis as we can, with TOS. Ultimately, it is a TOS guru doc who will put all of the puzzle pieces together - and make the decisive diagnosis.

I personally wouldn't skip any of these tests for that reason, and if you don't agree, you certainly have the right to manage your case as you see fit.

Good luck!

Hiya Tam- I think you make a great point for anyone who IS fighting a workers comp or disability case....In that case you must be very organized and make sure you have all the relevant info.

I think this is also a prudent course of action to rule out or at least be aware of other possible complications if you are seriously considering surgery.

But, not everyone is going that route...

I thought this thread was just for people to call out what the Most Definitive test they had was. In my case, been through oodles of tests...but Dr. Jordan's ultrasound of my brachial plexus was the definitive test.

Johanna

My Dx; was the result of having an MRI and normal X-ray of the cervical spine which did show problems within my neck, but none that would confirm the symptoms that I was having. These done by the Neuro-surgeon that I was sent to by my work! However, in the past I did have problems with my neck, though never felt like what I ws going thru! The kicker was when I had PT done the second time the therapist did manual traction which caused both to explode with pain! That was the point that my faith in the Neuro-surgeon, PT and employee health Drs. was over and I sought help elsewhere and thankfully through investigation through the internet came about Dr. Togut.
Dr Togut did an amazing evaluation of my past history and a highly intense exam, and followed up with an EMG to confirm his findings, here again, he did not discount the cervical findings, but definately called Bi-lateral TOS and as I have been waiting for surgery have since decompensated and now am fortunate to be labled with RSD/CRPS!
When I went to Denver to see Dr. Sanders, he also had done a detailed past history, a major physical exam which included Scalene and Pectoral Minor Blocks that especially felt wonderful after flying out and only having an hour between the airport and the office visit. Though only lasted a short while which with all the rest of the info I had there was not doubt of Bi-lateral TOS!
This is how I was DX'ed and hope it is some use to others!

Mark-n-Goober

Those who have a medical background (and some whom don't) do "get it". We "get" the medical part of it.

If you as a "lawyer" view the medical part of a disease differently I guess that's the way different professions view things.

It still doesn't change body systems and how they work. No one but God can change that, and even he, after all this time, may have a hard time doing it.

Coming from the medical part of those who "get it" it's always important to make sure people don't relate everything they have to a "certain" syndrome like TOS (that can't cause someone's constipation & beleive it or not it has been condsidered by others here), docs look at patients that do as hypochondriacs.

Now, before anyone goes off on the constipation thing and come back and say yes it does, stop and think before you post. :confused: TOS does not cause constipation. Now, the meds that you take for it will, but not TOS itself. Patients who are able to separate the difference look smart in the docs eyes and have more of a chance having the docs treat them like they are the smarter patient who can teach docs something about TOS that they may not know. Knowledge is power, as long as the knowledge is correct.

Many do end up going through many types of tests before TOS is found, it happens more then not. But one shouldn't automatically open themselves up to many tests that just are not needed. Get to a TOS doc and allow them to order more testing if they feel it's needed. If we as patients could order our own testing we probably would have had a DX sooner then later, but we can't. Pt's also can't go in to a docs office demanding what tests they want, they can, but chances are the doc won't order them. There's nothing wrong with "gentle" suggestions but the doc does the ordering in the end.

The bottom line is that there's a fine line between what we as patients want to see done and what the docs are willing to do without being told what to do by the patient.

Toser,
I do not feel that this statement is fair and want to make sure you did not misunderstand "someones" post. I searched all 9 threads that discuss constipation. I did not read anyone that did not seperate the issue.
Constipation is noted as a side effect for TOS medications.

We use this forum for support and sharing personal information and experiance. I give great credit to all that share, and request information.

Besides, that person may have something related to TOS why it causes constipation that their doctor told them and whom are we to judge.I found the statement meant to discredit kind folks.
Dianne

et al
 

Anything and everything can happen internally and externally to TOSers.
Are bodies are the same
Even though the symptoms may change depending on the individual where the compression is and how it is treated.
Sorry, Better...I have to disagree with you that GOD can only change this.
Not GOD...
Just as TOS has nothing to do with thyroid, constipation or even lower body sciatica, leg stiffness, toe numbness (which a well know TOS surgeon believes).
How can that be?
We have a closed circuit, circulation in the human body.
The anatomy is controlled by the nervouse system and circulation.

Only us as informative researchers can help each other.
We are teaching the docs, the surgeons, the attorneys, our family and friends consistantly.
We are not in this as a game.
This is serious ****.
It is a life of pain, sorrow and can cause death.
Do you hear me?
We as most TOSers are searching out every aspect to help our chronic pain and hopefully in the fututre the medical field will come together.

In meantime we come together
To share our experiences, our reseach, our pain.

Regards
And live life to the fullest
Each and everyday through the pain.

I believe in us!

Very powerful
 

olecyn,

I have read your statement several times and cannot help but feel the need to congratulate you. You very clearly and concisely summed up my life at least and most of our lives in a few sentences. I think I will print this out and pin it to my wall. You're right this is serious ****! I only hope that physicians understand how serious it is. How much work we do to research our disorder. How much help we give each other here. I know I truly would be lost without all my friends and what I consider family here. So thank you for saying these very concise points!!!



You are a master of linguistic style!:D

Love and hugs,
Victoria
:hug:

Hi everyone,

I would like to ask, for now, that statements about testing and dx only be posted on this thread.
Let's stay on topic "Definitive Tests to diagnose TOS...."

Lets avoid certain discussions because many of us have formed our own opinions and discussing it won't change anyones mind.

If any new members would like clarification on a test or topic here they may PM the poster that they have the question for.

Thank you very much.

PS-
I will do edits if I feel they are needed.

Like I said, it was my opinion and that of the medical profession. You can believe what you want, as can I.

I have better things to do like enjoy life then try to change thousands of years of medical practice and the way docs think.

To those who need medical tests done, get to a TOP tos doc and let them order the tests needed. It may cost less in travel and time then paying for the tests depending on what ins one has.

I won't reply to this thread again. Sorry it got off topic Jo55.