Hello fellow TOSers,

I thought it would be a good idea to follow in the footsteps of others who are mostly on the West Coast in documenting my search for a surgeon here in NYC. I hope that the info I learn from/about these doctors might help others. I would also appreciate any comments/input on this whole process. At this point, I have seen 2 surgeons, one a neurosurgeon, Dr. Noel Perin and as of last week, a vascular surgeon with TOS experience. I will start by editing and posting a short version of my story from an older thread.

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for over a year. My symptoms have been right sided (neck, shoulder down my arm to my fingers) until recently, I am now also having pain and tingling in my left side but not nearly as bad as my right. I have done PT twice, been on several anti-inflammatories, muscle relaxants, nerve meds and pain meds, gotten several trigger point injections to my neck and shoulder, epidural injection to my neck, a nerve block and ablation of the medial branch nerves (in my neck) and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until recently (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan guessing on my first visit that I have cervical ribs.

Almost 2 weeks ago, I got a right brachial plexus nerve block focusing on my lower trunk and it was positive (felt relief in my arm and hand for several hours until the medication wore off). This was ordered by Dr. Perin. He wants me to do a second BP block more specific to the lower trunk with a different doctor as he believes the first doctor let it go to all trunks (I have not decided whether I am going through with it again). Dr. Perin’s surgical procedure involves his moving the nerves that are apparently climbing over my cervical rib. Because he is a neurosurgeon, I don’t think he does rib resections. He also does not seem to have a ton of TOS experience. This is why I chose to find and see every vascular or thoracic surgeon I could in NYC to get more opinions as I want a very experienced surgeon (as would anyone given how invasive the surgery is).

From my search, I found 10 doctors here who have listed TOS as a specialty or clinical/research interest. Here they are:

Dr. Matthew Williams (does not do any more office visits/consults)
Dr. Gary Fantini (no longer operates)
Dr. Michael Francis Silane (no longer operates)
Dr. Mark Adelman (NYU)
Dr. Glenn Jacobowitz (NYU)
Dr. Thomas Riles (NYU-no longer operates)
Dr. Patrick Lamparello (NYU)
Dr. Carol Rockman (NYU)
Dr. Darren Schneider (NY Presbyterian/Weill-Cornell)
Dr. Harry Bush (NY Presbyterian/Weill-Cornell)

All but the first are vascular surgeons. Last week I went to see Dr. Riles, not knowing he no longer operates. He and all of the above NYU doctors share the same practice. He took a look at all my paperwork, tests, doctor’s notes and had me do Adson’s maneuver. Before all of this, he let me know that he only consults however if it looks like I need surgery, he would get one of his partners in. This is what happened after about 10 minutes. He had Dr. Adelman (who is the Chief of Vascular Surgery at NYU) come in and told him it seems like a “clear-cut” diagnosis.

In Dr. Adelman’s office, I had my list of questions in front of me and spent an hour in there getting the answers (and I’m glad I did). During this time, he told showed me the CT scan and my cervical ribs, he also showed me a ppt presentation with pictures of the one surgery he performed on a patient with cervical ribs that he removed with the supraclavicular approach. His stats: says he does around 10 TOS surgeries a year and in his 21 years that would make it around 200. Majority of these have been for venous or arterial TOS. This is what threw me off. I asked him if he thought I might also have Pectoralis Minor Syndrome as I have the symptoms. He gave me a blank stare and told me he has never even heard of it. He later told me that 2 of his partners have also never heard of it. I found this odd, as 50% of those with TOS also have this. He did not have much knowledge or input on diagnostic tests, however he said that the scalene block is NOT useful after talking to a doctor at Johns Hopkins (who apparently works with Dr. Jordan at UCLA). He said this doctor (who’s name I cannot recall) told him not to adopt the scalene block as a diagnostic test for TOS. He told me he cannot be sure I have TOS but it “seems” since everything else has been ruled out, that my cervical ribs are compressing my brachial plexus. His procedure: cervical rib (without first rib) resection with a partial scalenectomy. When I asked why he would not just remove the entire scalene muscle, he did not give me a clear answer. He said he would use the supraclavicular approach because it is harder to reach up to the neck using the transaxillary approach. He said that he would NOT do a BP neurolysis because he says I would have no scar tissue since I have never had surgery. This is what also threw me off. Can’t scar tissue also develop solely from nerve damage and inflammation?
He said I would be hospitalized overnight unless I need another night for pain meds through an IV or my lung collapses. He said I would be back to work in 10 days until I explained my job (involving computer work/typing/sitting the entire day and commuting via bus/train/walking) and then said a month seems better in my case. He said I would feel pain relief the very same day as my surgery. He also said most of his patients don’t go to PT post op and just do a couple of exercises at home that he shows them. He said I would be able to do the other side after about 1 month following the first surgery.

Ok, so based on my visit with him, I just did not believe he had enough experience specifically with neurogenic TOS and cervical rib resection (although I know the procedure is the same as first rib resection). I also just felt like, the entire time, I knew more about TOS than he did. His partners at NYU also seem to have a similar amount of experience as he does, although I can’t be sure if I don’t see them. And I honestly think it would be a waste of time as I am sure Dr. Riles would have referred me to the most experienced surgeon at his practice if he could, and it seems Dr. Adelman was his choice.

Tomorrow, I will be seeing Dr. Darren Schneider. I am hoping for better luck! Will post my experience with him next. He is the last of 2 surgeons here I would see. The other is Dr. Bush who is at the same hospital and might also work with him so I will find that out. Otherwise, my next step is going out of state, although I definitely plan to at least get a phone consult with a couple of the very experienced surgeons in Denver, Dallas, and LA.