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