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.

That is a bit off putting to ask a question and get a blank stare... and the scar tissue point also, I think a few have had some sort of existing adhesions by the time they got into surgery.

Great write up, should be very helpful for others in the future.

Parbie,
All three surgeons in L.A. and Dr. Jordan all rely on the scalene block as the best test. The fact that you have cervical ribs is the most telling sign in your case and to be honest a more clear cut diagnosis than for instance mine as I have neuroenic TOS but no cervical ribs. I believe surgical ribs can only be removed superclavically according to many articles I have read,the big question is do you need a scalenectomy as well since they will be going in superclavically that is the only way they can do a full scalenctomy.If you felt like you know more than the dr. I would not go with them. I think you will have better luck with Dr. Scnneider, I think dr. Jordan mentioned him to me once. I have many articles from NCBI if you want me to send them to you I could look for the ones that talk abut Cervical Ribs.
I would need your e-mail address to send them as this site wont send the whole pdf.s good luck tomorrow! Let us know what happens.

I'm guessing the Dr. he mentioned from John's Hopkins is Julie A. Freischlag who trained and worked at UCLA with Gelabert, Ahn, Jordan, and Angle.

I think the scalene block procedure is unnecessary for diagnostics since you have multiple cervical ribs. All the surgeons in L.A. do not rely on the scalene block for diagnostics. Sam Ahn and Niren Angle (Orange County) do not as they have found that negative results do not rule out TOS (as was the case with me).

Why do you say 50% of those with TOS suffer from pec minor syndrome? Most of the surgeons I consulted did not believe in the necessity of the pec minor surgery (either never heard of it or never done it). I believe Dr. Sanders and his protege Annest in Denver led the charge regarding pec minor tenotomy. Dr. Thompson in St. Louis performs it as well. I haven't found any others who do. The outcomes of the pec-minor procedures are not overly positive in this forum. While I get compression at the pec-minor, they are able to release it in therapy (and I have learned some self release techniques). Do a search on this forum to see some of the downsides of having the pec minor surgery.

In regards to neurolysis, scarring/adhesions can develop from inflammation and edema. You definitely want to choose a surgeon who is prepared to perform the surgical neurolysis if necessary.

Great write-up BTW

Marc, Sorry I didnt mean that all the dr's rely on it solely,but all 3 surgeons that i saw including Ahn,but especially Gelabart and Mckenna,were very interested in the fact that it was positive and seemed to rely on it for me.Ahn wanted to do his angiogram test. Mckenna suggested an MRA,but wasn't necessarily recommending it.Thats why I would want to do the scalene block again if I was going to pursue surgery. I havent seen Angle.(I dont consider him "in L.A.")

Parbie ,If you think it is the pec minor,you could also look into the MAC test. its the nerve test that tests for pec minor involvement. I am still considering this too as I think I have pec minor involvement too. The PT definatley helps me with this too. And yes I think the Pec Minor Tenomoty is still controversial because not that many dr's do it. Ahn will do it if he finds out that is where the compression is based on his angiogram test.

Since you know you have cervical ribs, the first thing I would think they would want to do is to take them out and once they are there they can see what else if anything is going on. Weather they do full scalenectomy or neuryolosis does seem to depend on the dr.

, I would appreciate it if you could send me those articles, I will private message you with my e-mail, thanks!

Thanks Marc, yes Dr. Julie Freischlag is the doctor he was talking about. I have decided based on my most recent visit which I will post about next, that I don't need to get the scalene block. I might however, still get another BP block to the lower trunk just to be sure before surgery although Dr. Schneider didn't seem to think it was necessary. Thanks for the info about the neurolysis, the research I had done says exactly that, so I was very confused when Dr. Adelman said it scar tissue is only there post-surgery.

As for the Pec Minor Syndrome, the info I read was from Dr. Sander's publication. I think it was one of the first articles on TOS that I read after I was diagnosed. But I will definitely do some more research on that. The article made it seem like the tenotomy is a much simpler procedure and I think I also read somewhere it can be done together with the thoracic outlet decompression surgery. Do you have any sources on the type of release techniques you do for the pec minor compression? I would like to try those out and see if it helps me.


I am thinking of getting the MAC test too but so far it doesn't seem anyone here even does it. I will need to look into that next. I am not seeing a PT right now so currently I am not doing any exercises. Last time I went to PT recently for 8 weeks and I was worse and now have learned why, as I was doing exercises that were not targeted to my TOS. I am going to continue this mixed in with my update on Dr. Schneider on the next post.

I saw Dr. Schneider yesterday. A resident doctor (who assists him) saw me first and asked me to explain what was going on before looking at my reports and dr's notes. He then performed the Adson's maneuver. When Dr. Schneider came in, process was similar he had me explain all of my symptoms and all of the conservative treatment I have done. He then did several physical tests which were very painful, moving my arms around, pressing on my brachial plexus, on my cervical spine and Adson's maneuver again.

He then told me that he believes I do have TOS and said what Dr. Adelman said about it being a diagnosis after everything else is ruled out. He said that given the severity of my symptoms and my lack of success with conservative treatment, surgery is most likely necessary. However, he also said that I had not been receiving the correct PT treatment as stretching and strengthening always makes TOS much worse and he wants me to try out Edgelow's therapy for about 1 month although he believes I will need surgery anyway. He said that it might help and learning the exercises pre surgery will be good for me so I am familiar with them post surgery. Dr. Schneider is originally from UCSF and seems pretty familiar with Edgelow. He said I would have to purchase the home kit because he does know of any PT's in NYC who specialize in TOS treatment. He said that HSS (the Hospital for Special Surgery) claims to treat it, however he does know how well they do with this and how much they really know. Anyway, so I agreed to try Edgelow's for one month and see him for a follow-up. I also thought "why not" since I will be using the next month to get more opinions anyway as 2 is just not enough for me. Before purchasing it, I wanted to know if anyone has done this therapy and if it has helped? I might post a new thread with that question.

As for the surgery details, he said he has done 150-200 surgeries to date, that patients report 70% improvement in symptoms, and a 70% success rate. He said he would do a cervical rib resection (first rib if necessary) via the supraclavicular approach with a scalenectomy and BP neurolysis. I would be hospitalized for 3 nights, and would be in discomfort for 2 to 3 weeks. I would need 1 to 3 months off of work. He said he would wait 6 months before considering doing the left side because my right is so much worse and he believes it is possible my left will get better without surgery as some of my symptoms may be from overuse. He said that it would take 6 months to know for sure if the surgery was a success.

After my appointment, I had forgetten a couple of questions, one of them being about the Pec Minor syndrome so I spoke with his assistant. He told me that he has heard of it but is not familiar with it and that if I had any sort of compression there, Dr. Schneider would probably decompress that area as well. He was also not familiar with the nerve block for this. I also asked him if there any more diagnostic tests I should have done, he said based on what I have so far, he does not believe I would need anything else, thought I wish I was able to ask Dr. Schneider this directly.

Overall, I liked Dr. Schneider, felt like he definitely was more experienced with TOS, however I still feel I want to get opinions from doctors who have done a lot more surgeries than 200. Like I said before, I want a very experienced surgeon so I would not even mind flying out of state for this. I am definitely keeping Dr. Schneider in mind if I choose to do the surgery in NY.

However, after speaking to him about the recovery process I am now getting concerned about that, as it worries me there is no experienced PT here and recovery is just as important as the surgery. That is one major reason I am considering doing the surgery elsewhere and then staying in SF Bay area for 2 months for PT (I have a very close friend who lives there). For anyone post surgery, what kind of PT exercises are you doing? I am also considering PT in Toronto (where my family is) as long as I can find someone with experience over there.

My next step: I am planning on contacting Dr. Gelabert, Dr. Angle, Dr. Sanders, Dr. Jason Lee, and Dr. Harold Urschel (Dallas) via phone and deciding whether or not I will be flying out of state to see any of them (besides Dr Sanders who does not operate but may possibly see Dr. Brantigan or Dr. Annest in Denver).

Sounds like Dr. Schneider knows his stuff. And seems thourough. He is also pat of the TOS consortium which according to Dr. Jordan is important.Have you thought about seeing Dr. Thompson in St. Louis or Julie Freishlag in Baltimore? Dr.Donahue in Boston. The people on here rave about him. I think all of these are VERY experienced with good reputations.

I am not sure if there is a good dr. in SF anymore and I have not heard anything much about Dr. Lee. What have you heard about him?
I did like Gelabart alot and he is very experienced. Also make sure your insurance covers you ,Dr. G is not in network with mine at the moment.

Yes, I felt a lot better after seeing Dr. Schneider, but of course want more opinions. Maybe this is because most of the people on this forum are from Cali, but it seems like the best most experience PT's are located over there and that is really something to consider, as now it is an issue of choosing an experienced and skilled surgeon as well as an experienced and skilled therapist for post surgery.

I have only read something about a patient on the forum who had their surgery with Dr. Lee, but also don't know very much about him. Apparently he only has a few years of experience but I thought it was worth a shot to speak to as many surgeons as I can before making my decision.

Fortunately, I don't need to worry about in and out of network surgeons as I had met my annual deductible and out of pocket max both in and out of network within the first 2 months of this year :| so I should be ok, but thanks for the heads up. I left his assistant a message, haven't heard back yet.

No, I hadn't thought about the Doctors you mentioned but I will definitely consider speaking to them as well, I mean considering I am willing to fly across the country, it no longer matters what state I end up in I guess. I am definitely leaning more towards Cali however, since I can recover in SF (after the first week of staying put), even after doing surgery in LA or Orange County, and the flight will be nice and short as opposed to a few hours. NY is still an option and I have decided if I do stay here my surgery will be with Dr. Schneider since I don't have many options here and he seems to be fairly experienced.

I also spoke with Dr. Niren Angle today (mostly based off of Marc's positive experience with him) but am in too much pain and exhausted right now to continue typing, so I will post about my convo with him tomorrow.

Been meaning to update on this. I feel like my thread should no longer be “East Coast” since I ‘ve been speaking to surgeons all over now. Anyhow, I have spoken to a few surgeons over the phone/e-mail in the past few days, including:

Dr. Niren Angle (Orange County, CA)
Dr. Jason Lee (Palo Alto, CA)
Dr. Robert Thompson (St. Louis, MO), actually only spoke to his Medical Assistant, Robert Fuller
Dr. Harold Urschel (Dallas, TX)
Dr. Hugh Gelabert (Los Angeles, CA)

I am waiting to hear from Dr. Charles Brantigan (waiting for response to e-mail, just got back from vacation) and Dr. Stephen Annest (on vacation until July 3) in Denver, CO sometime next week. Dr. Richard Sanders is also on vacation until July 9.

I also spoke with Dr. Julie Freishlag’s (Baltimore, MD) assistant and got some information, and the main reason I am not considering her is her availability (no consults until November). Also, she does not do phone consults, neither does Dr. Dean Donahue (Boston, MA). And while Boston is not that far for me to travel for an in-person consult, I have already decided I want to do my PT in CA and will be moving there for a month or two following surgery so I’d rather do surgery closer to CA than over here.

Ok, so I will go in the order I listed above with the surgeons I spoke with.

Dr. Angle called me directly from his cell after I left a message with his office and faxed over my paperwork. I explained my symptoms, history and asked my questions and spoke with him for at least a half hour. He also told me to call back anytime if I had any more questions. Very few doctors do this, and I liked that alone because it means he is easily reachable and available for post-surgery recovery (which will evidently be lengthy). This factor is also important to me since I am going to be doing surgery out of state. So here are all the answers to the questions I asked him:
-10-11 years experience, has done 75 to 100 TOS surgeries to date
-could not tell me his success rate for nTOS because he says he is very selective with those cases and was unsure, but he said he has no recurrent cases
-Trained at UCLA
-Transaxillary approach (his preference for this is because you get 2 incisions the supraclavicular approach, he said if you have the experience, the approach is not more difficult)
-would completely remove the cervical and first ribs, and a partial scalenectomy with the anterior and median scalenes, and neurolysis of the brachial plexus (which he said less than 5% of patients need)
-said nTOS patients do not get complete relief as often because there is usually a lot of trauma involved and other diagnoses like fibromyalgia
-said I have classic identifiable symptoms, 90% of the diagnosis is made by the clinical exam, but would have me do an MRI venogram (one last test)
-3 to 6 months before operating on the other side
-has not seen anyone with Pec minor syndrome and feels the diagnosis is “questionable”
-surgery would be 2 hours, would be hospitalized for 1 to 2 nights, off work for at least 4 weeks, physical therapy begins 4 to 6 weeks after
Overall, I really liked Dr. Angle. He was very easy to talk to, kind and understanding, and definitely very experienced and knowledgeable.

Dr. Lee: When I called his office, they had me fax over my test results. I called to follow up a couple days after, and his assistant said Dr. Lee said I am a surgical candidate and would like to schedule an appointment. I asked if there is a way I can speak to Dr. Lee before flying out to see him. I was given his e-mail. I e-mailed over a description on my history and symptoms and my list of questions. He responded very quickly (couple hours) and answered every one of my questions and he also attached a very recent (December 2011) article he published about the success rate on nTOS cases, which was great (over 80%).
-He said because I have c-ribs, my success rate would be even higher
-He said my c-rib + symptoms are enough confirmation for a TOS diagnosis and does not need any further testing
-Thinks pec minor is seen only when rib resection doesn’t work
-Does Supraclavicular approach, and says he has never done it any other way as his reasoning behind this
-Said he has never re-operated one someone
-Wait 3 to 4 months before operating on other side
-Hospitalized overnight, home in 1 week (as in traveling back if I were to go back to NY), back to work/school within 2 weeks, range of motion exercises for 1 month, rehab is over 2 to 3 months

It’s interesting to see how much the surgeons differ in their opinions over the same case. I found it interesting that he said I would be back to work in only 2 weeks considering I do 95% computer work (which I e-mailed back to explain). He is also the only one who thinks PT should begin right after the operation rather than waiting a couple weeks for the nerves to heal. He also said there is no TOS specific PT although when I told him I would be doing PT in CA, he said it would be at Edgelow’s practice. The approach (supraclavicular vs transaxillary) is also something I am still deciding between so I am not sure how much that will factor into my decision just yet. Other than that, I liked that he responded quick as well (I e-mailed him back twice and he responded within 5 minutes following the initial e-mail). However, I would still like to talk to him over the phone if I decided he was a top choice, because I am concerned with him sending me back to work too early, where I can easily re-injure myself by repetitive strain, and also with his sending me to PT so quick. He said I could schedule my surgery with him and it would be a Tuesday. I was thinking, without a consult or physical exam??? So I asked and he said I would consult Monday prior to the surgery. I just feel like he is a little too quick with everything (the only good thing would be the responses).

Ok need a typing break, will post about the rest later tonight or tomorrow