I was diagnosed with tos after a year of being diagnosed with 5 other things first.
The doctor who diagnosed me is a peripheral nerve surgeon/orthopedic surgeon.
He did NO diagnostic tests other than lift your arm, turn your head, feel my pulse. He says there are NO other diagnostic tests, and the only way I will get better is for him to cut into me once & release the pinched nerve, and than possibly 2 other surgeries afterwards (maybe on my elbow, than my hand if need be)
Please send me any info on diagnostic tests I can try, and what type of doctor I need to see.
I am in New Jersey, so if your local any names of doctors you recommend would be great too.
The only way I have found to keep my pain level relatively down is therapeutic massage & to not use my arm, and no lifting.
This surgeon is trying to force me back to my (very physical job) which I am not physically able to do, to force me to choose the surgery.
It's workmans comp, I have a lawyer, but I really need help on what to do.

Hi there are other tests- but they are expensive - but don't agree to a surgery just on the basis of what that one dr says.

DOCTORS and PT List for TOS-
http://neurotalk.psychcentral.com/showthread.php?t=135
Our Useful Links - Websites, Articles & Polls-

http://neurotalk.psychcentral.com/showthread.php?t=84

thread with testing info-
http://neurotalk.psychcentral.com/sh...ht=TOS+testing

Hi sweettheresa,

Hi Sweettheresa,

First of all, DO NOT let ANY surgeon pressure you into surgery without a second opinion (except for the rare case of an emergency...does not sound like that is your situation).

Many here will confirm that diagnosis of TOS is a matter if exclusion of other conditions which are mimicked by TOS. Often, we have gone through many docs and varying opinions and lots of time before we really know what is going on.

First let me say, do not let anyone perform surgery on your elbow or wrist until to source of the impingment is determined. My Rheumatologist tried a simple test to determine if I needed a release below my shoulder.

1.) I was given a shot of Cortisone in my wrist....no relief.
2.) I was given a shot of Cortisone, a few weeks later, in my shoulder.RELIEF!!

This logical proceedure vividly demonstrated that a Carpal Tunnel release would have been a waste of time and could cause more harm than good.

I have been seen my many specialists, including Johns Hopkins. There is a new TOS specialist there now, a woman, who may be a respected choice for a second opinion, (and Surgery) if necessary. I was seen by two male Neurosurgeons, whom I would not personally choose for reasons I will not go into on the forum.

HOWEVER, my personal favorite is Dr. Michele Cerino, (A Male). He is a very through, kind, experienced and trustworthy Thoracic Surgeon. He practices a Harbor Hospital in Baltimore. He is listed in the forum registry. He will NOT recommened surgery unless it is a good idea for YOU. You will probably be expected to go through about 3 months of specialized physical therapy, before surgery would even be discussed. This is standard proceedure unless you have cervical ribs or extreme circulation issues.

Dr. Cerino has a lab where specialized tests are available such as ultrasound on your shoulder/neck area, circulation studies, with blood pressure cuffs and special moniters, and so on. This determines if you have arterial or venous TOS. You will be sent for an MRI, and probably an X-Ray.

He will refer you to a Rheumatologist experienced in TOS, this will rule out other disorders such as MS, etc. Also, fibormyalgia and other soft-tissues problems can be determined.

He will refer you to a Physiatrist (Pain Doc), for tests such as EMG, SSEP, or other test that will determine if you have Carpal Tunnel, Cubital Tunnel, etc. These tests are designed to determine if you have neurogenic TOS and to what degree. Sometimes these tests do not show much, however mine were severely positive.

You will be evaluated for depression. These Specialists know how to deal with WC, Social Security and so on. This is a comprehensive team approach with physicians who know what they are doing and will NOT just force you to have surgery, if that is not in your best interest. If you cannot be seen by Dr. Cerino, he may be able to refer you to other speicialists in your area.

Many other members of the forum will have advice and ideas for you. Today is just slow because of the holiday weekend. Feel free to PM me if you have any quesetions. Try not to panic...there IS help out there. Also, many ins. companies will not pay for surgery without a 2nd opinion.

There may be a few things I have missed, but these are the biggies. I just want you to know, there is appropriate help out there. This is difficult, but you will be alright.

One thing I haven't mentioned: many forum members believe, or have been told, that surgery should not be delayed. BUT in my case, I was told by EVERY TOS surgeon, that it did not matter when I had surgery. If I had it done today, or ten years from now, the outcome would be the same. SO, be sure that question is cleared up. It is best to give yourself as much time as possible to make a desicion regarding a complicated surgery such as this.

Unless you have something like cervical ribs, you should not be rushed. Many TOS patients live a reasonable life (this may NOT include working) with proper medication. I have been told that surgery 'might' help with pain temporarily, but surgery would NOT change the status of my disability. Just food for thought.


No matter what, you will be OK. Life changes for all of us. With TOS, change is individual and varies widely in degree. So please tell your Surgeon that you need a second opinion. If he thinks you can go back to work for even one day, they you are probably not experiencing and emergency.



Anne

Sweettheresa,

I also live in NJ. I have bilateral TOS and was diagnosed by Dr. Pertchik a neurologist in Tinton Falls, NJ (Monmouth County). He is a good diagnostician and is friendly. Good luck.
Jeanne

Sweettheresa,
welcome, and i'm sorry for what you're going throught right now. When I finally got to my Pain Mgmt Doc specialzing in Neurology, he told me not to let ANYone cut on me without 1). talking to him again, and 2). getting 2 other opinions.

That being said, tests for TOS can be inconclusive, and even get different results at different times! I had EMG's show different results not 2 weeks apart.

I hope you are able to sort this out. Feel free to PM me with any info.
-dabbo

Thank YOu SO much for the information, doctors info & most of all for being so caring.
The hardest part of this whole ordeal is the 8 work comp doc's I have been to, can care less about me
Your info will be most helpful to me, as it is the first time I have heard alot of it. I had no idea if I got the surgery now or later that it would be the same outcome (genius) and such a load off my mind.
The questions without answers have been really bugging me, So I thank you immensely for these answers.
You are very encouraging, & I am very greatful

Hi & thanks for the info. I really appreciate u recommending this doctor.
If you don't mind me asking, what diagnostic tests did this doctor perform to rule in tos?
I'm trying to find doc's with extensive testing to be sure I have tos (and not something else that can be confused with this)

Oh, do you have a work comp atty on your side, and your own treating dr? You aren't just seeing the comp ins drs are you?

Sweettheresa,

As was stated in another reply, Tos dx is a process of elimination and some of the tests can be very expensive and sometimes not useful. What I mean by that is that one Tos expert will perform one type of imaging scan (CT or MRI) that only that Tos expert believes in so that if you brought the results to another Tos expert they would dismiss the results.

I was dx 6 years by Dr. Pertchik and from what I remember his exam involved the EAST test which is where you put your arms up in the stick em up position and flex your hands for 3 minutes in that position. If you develop sx's such as numbness, tingling, coldness, in your hands or arms then it's considered positive. He also does the Adson test you described in your first post, and another test involving you holding your arm up like your throwing a spear. He also orders a chest xray to rule out Pancost tumor, check for cervical ribs. He will also check your neck range of motion and if turning your neck in a particular way brings on symptoms which could indicate c-spine pathology.

If your willing to travel to Wilkes Barre, PA there is a Tos expert there Dr. Togut. I have not seen Dr. Togut, but he is highly recommended by some members of this forum. Hope this was helpful.
Jeanne