Originally Posted by parbie

What kind of DR is Plancher and where is he located? Never heard of him through all my research. Is he a TOS specialist?

Originally Posted by parbie

My symptoms are getting worse and worse on both sides. I really did not react well to those injections. Anyway here is the summary of what has been going on:
-I was not hearing back from any surgeons and every office stated the surgeons do not do phone consults and I would have to see them in person
-On Monday, I called Dr. Pearl's and Dr. Donahue's office because they are at the top of my list.
-Dr. Pearl's office said he won't do a phone consult but he took a quick look at my history and immediately told his assistant I definitely need a redo surgery, he said "her surgeon didn't do what he said he would do"; so I decided right then and there to book a consult and surgery next day with him and was all ready for June 12 surgery
-Dr. Donahue's assistant Pat said he also would not do a phone consult, but I explained my entire situation and that I had spoken to him last year. On Tuesday he called me. I was caught off guard because I was not expecting it and I had written him off because he was not able to see me til mid July at least and I could not wait that long. But he spoke to me that day for about 45 mins, said he went over all my history, asked me my symptoms in detailed, even apologized for calling so late and asked if it was a good time. He is SO NICE! Definitely understand why everyone on the forum absolutely loves him because I also do now. He asked me how he could help and I asked him his thoughts. He said he is conservative and only operates on 20% of the neurogenic patients he sees and he says he usually does not make a decision on whether I would be a candidate for surgery via phone but he said it sounds like I would be. He also said I need to realize this is a redo surgery and if he does it he is 100% taking out the extra rib + first rib and because it is a redo it will be a longer surgery. I explained my whole visa/insurance situation to him and he actually opened up his calender (this was past 5pm his time by the way) and scheduled me in for a day he does surgeries and said he would make time to see me once he is finished operating. Again, this man is the kindest, warmhearted, considerate and caring surgeon I have ever had the pleasure of speaking to and I have not even met him yet!
-I rethought my whole Dallas surgery and this is the plan: I fly to Boston June 5 to see him June 6 and do a CT scan June 7. I will then schedule surgery with Dr. Donahue depending on how everything goes. Boston just works out much much better for me distance and convenience wise but also I could not ask for a better surgeon. I have a flight still scheduled to Dallas from Boston to see Dr. Pearl but it is very likely I won't be going. Especially because I do not have any family members available to come care for me mid-June. I will have surgery end of June or mid-July hopefully with Dr. Donahue. The left side who knows, because Dr. Donahue says my recovery will be even longer than before and he does not want to rush it. That works for me! I then unfortunately have to fly back to NYC after to get my things from storage moved to Toronto and then finally I can fly home. This is a lot of travelling and I am not looking fwd to the flights and pain involved but I have to do it.

-Also want to add: every negative thing I read before about Dr. Lee at Stanford....omg so right. DO NOT GO TO HIM! I saw him today and I do want to bash but man, he is not a nice person. He also is very arrogant and he was trying to cover his *** because he knows Annest and Sanders and said very frankly "I don't do redo's". Ok then why the hell did you waste my time and money to come see you if you already knew I had surgery before? UGH! But on a positive note, I found something else out. Well actually it is not positive but I am trying to look at the trip to see him as not a waste because I had a Doppler test done and found out I also have arterial TOS on the right side. Dr. Lee did scare me he said he has never had a redo go successfully because there is too much scar tissue and that if I have it done, I will get more nerves injured and may lose all use of my right arm! I honestly was scared but then I thought about it, and I only went to see him out of convenience I never would have let him cut into me anyway just like I chose not to the first time, and I do not even value his opinion vs Dr. Pearl and Dr. Donahue who are much much much more experienced and have much better success rates.

So, that's my plan! .....will keep updating as I go. I feel it in my gut that I am making the right decision.

Originally Posted by nospam

Re: Donahue - awesome news!

I have feeling Sanders and Annest are going to conveniently omit you as a failure when they publish their next study touting scalenectomies without rib removal. Such a shame!

You may want to contact your insurance and a lawyer regarding malpractice. I would!

Originally Posted by jkl626

Parbie-just wondering if you can get your stuff out of storage BEFORE your surgery or pay someone to do it for you? I know it would be more expensive but you dont want to risk hurting yourself so soon after surgery.

Originally Posted by parbie

Thanks so much Marc! Yes I am looking into finding a lawyer for sure, just so many things to finalize, wrap up right now with the decision making and soon all the travelling that I haven't gotten around to it.

I refused to participate in their study when they asked before surgery.. I should have taken that as a sign then and there that they were more concerned with that than my surgery....

Originally Posted by parbie

Jkl, I appreciate your support and your concern very much!!! Don't worry though, I am planning to get it out before surgery and I will be paying a mover to do everything and to drive it to Toronto...flying to Boston just to see Dr Donahue for the consult and CT scan and then most likely flying to NY then home prior to surgery. No one in my family is available to go to Boston with me until end of June so surgery has to happen then or in July after Dr. Donahue gets back.

Originally Posted by jaydenskeeper

Just saw Dr. Donahue today for my 2 week post surgery check up which went great. Healing nicely, symptoms diminishing, and off pain meds. I just can't say enough positive things about this doctor. He is amazing not just in his surgical skills and knowledge of TOS but also in the way he treats his patients. He never rushes visits, always speaks to me if I see him in a different part of the hospital and calls me himself (not a nurse or receptionist). The entire process at Mass Gen is like a well-oiled machine as far as scheduling and the like. And the nurses on the floor are fantastic!
You will be in great hands if you go with him as your surgeon! Best of luck to you.

Originally Posted by parbie

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.