Originally Posted by Sea Pines 50

Hi Gigi,

It's good to meet you but I am sorry for the reasons why; I would not wish a TOS dx on my worst enemy! I truly hope that now that you have the TOS dx, you can be steered in the right direction and develop a tx plan that works for you.

You should know that it is not unusual at all for there to be a crazy amount of misdiagnosis before TOS is ultimately detected as the source of pain and neurologic deficit.

Very common among those misdiagnoses are cubital- and carpal-tunnel syndromes and even the tennis elbow you originally suspected. The ulnar nerve is often compressed or injured with a lower trunk brachial plexus injury (the most common type of injury in NTOS). The sx can totally mimic ulnar neuropathy at the elbow (cubital-tunnel syndrome), when in actuality, the source of compression is really occurring much higher up in the body - under the collarbone.

Many of us come to this forum having had unnecessary surgeries for something else, like your ulnar nerve transposition, for example. Do you know if the surgeon actually "saw" the source of compression once s/he opened you up for that procedure? Were the electrodiagnostic tests done before the surgery, or after (based on your still being symptomatic)?

It very well could be that TOS was the culprit all along and the sole cause of all of your sx. This might mean that you only truly have one thing going on, and that Dr. Donahue would be the best surgeon to treat you at this point. (I don't know anything about Dr. Lee, but I believe they are colleagues. Try using the search function to find posts about him on this forum, you may find some interesting results that can help you to make an informed decision going forward)…

At the very least, if I were you I would seek a second opinion from Dr. D before considering any more surgery at this point.

TOS can be extremely difficult to dx and I certainly don't want to discourage you about any surgery or treatments you've had thus far. I just wanted to alert you to the fact that you may have been misdiagnosed in the process of trying to get to the bottom of things. A review of all of your medical records in light of the TOS dx is certainly warranted, hindsight being 20-20 and all.

You are lucky to live in MA! And your story demonstrates for us once again, the importance of consulting with a top TOS doc. Dr. D is absolutely in that category; Dr. L may be as well; I simply don't know.

I wish you all the luck in the world as you strive to get a handle on your TOS, and to determine the best course of action going forward.

Myself, I flew to Denver (9 years ago) to have a L first rib resection with Dr. Annest, who studied and worked under Dr. Roos - the pioneer of the transaxillary approach for this type of neurovascular surgery. Even though I live in L.A. and had access to other top TOS docs, like Dr. Ahn, my research indicated that Denver was the place to go (for me) because the three top surgeons there (Dr. A, Dr. Brantigan and Dr. Sanders) offered much more in the way of aftercare. I was in the hospital for 3 days; OT and PT were started while I was an inpatient and then I stayed in Denver for 3 weeks to get daily PT using the best TOS protocol then available. Followed up with Dr. A at the two-week mark, to evaluate surgical results.

I do also have CRPS, but because of the extent of ulnar nerve damage in my case (L hand is noticeably atrophied, and weak) it was not a deterrent to surgery because the benefit outweighed the risk. Fortunately, I did not have any flare-up of CRPS sx due to the first rib resection - a fact which I attribute to the excellence of my surgeon, as well as the quality of aftercare.

Please keep posting here and let us know what is going on with you. You certainly have access to some of the best care around for TOS and in that way, you are blessed!

Take care,
Alison