I may be a dissenter here, but Dr. Jordan was a waste of time and money for me (no insurance coverage or reimbursement for me). He is focused on treating TOS non-surgically with his EMG and ultrasound guided procedures. His diagnosis of me (scalene readhesion and cervical dystonia) was completely wrong once I saw a neurologist specializing in dystonia and then Angle went in supraclavicularly.

I feel that Sanders and Annest are predisposed on leaving ribs in based on Sanders old publications suggesting scalenectomies and pec minor tenotomies should be the focus. Why not open as much space as possible by getting rid of c-ribs that should not be there and the 1st rib which isn't necessary?

My physiatrist cut me loose as well after I had RF ablation which helped but I developed horrible SCM spasms (which trigger points didn't help much). It sounds like you only had shoulder trigger point injections when you likely need cortisone injection directly into a shoulder joint (Acromioclavicular or Glenohumeral). You should see a Sports Medicine or Orthopedic Shoulder Surgeon for this. I had an MRI which showed the AC joint and supraspinatus tendonitis and potential small supraspinatus tear.

If you come to So Cal you can schedule a free 15 min consult with James or Art at Ando & Aston physical therapy and get their opinion on your winged scapula. I'm not sure surgery alone will fix that.

hugs and love to parbie

Thanks Marc for sharing that info about Dr. Jordan. I have been through so many Drs and wrong diagnoses already and do not want to go that path again, or try anything that won't help, and those procedures don't sound like they would.

I will def visit Ando or James when I come to SoCal. I know a surgery will not fix my winged scapula, only time will heal the nerve. But it is just very interesting, for lack of a better word, that it is was the only thing that Annest was concerned with when I saw him for follow up and that he was even wrong about that.

I think what you said about Annest and Sanders makes sense, but still, if a surgeon says "I am removing your c-rib for sure, and your first rib if necessary", not "I am removing your c-rib and/or first rib if necessary", then he should have done just that. I never expected him to not removed it. He just does not want to take responsibility for making his mistakes, but of course no surgeon really does.
I hope I can find a surgeon who actually knows what he is doing and DOES what they he says he will do. Even a short convo with Angle's assistant Gina supported my conclusion from the day of my surgery that my c-rib SHOULD have been taken out, I chose a surgeon who said he would do so for a reason. Anyway, it happened, now I have to figure out my next step. I am also worried about how I can minimize the recurrence of scar tissue formation the second time around. Marc, what are you and Dr. Angle doing to work on that again? I recall you mentioning that in your thread.

I have an appt also coming up with an orthopedic surgeon who I was initially going to see about my knee (knee cap is loose or something :S) but now that I am realizing my entire body is experiencing myofascial pain and spasms, I am going to see him, but for the labral tear I have in my shoulder and see how much that is playing into my whole condition. My last physiatrist also diagnosed me with "Impingement syndrome", so now I have True Neurogenic TOS on both sides, Pec Minor Syndrome, and Impingement syndrome, as well as a Right shoulder labral tear and winged scapula. I really hope there is nothing more coming...

Hi Parbie-
Let me know if you come to L.A. I really like Dr. Gelabart-but I dont know how well they deal with out of towners. I would add Dr. Thompson to your list-he is considered one of the tops in the country and he takes everything out superclavicularly. I love Dr. Jordan-but he is expensive and he just does injections- Its true they are impossible when it comes to insurance , I am still waiting for them to approve facet block injections which may or may not help. Have you tried Botox? It didnt work for me but it is definatley more accepted then Heparin.Keep in touch-
JKL

Are you located in NY? If so, going to see Dr. Donahue would be so close and there i no question how professional and kind he is. Just think you'd be closer to home. I was with him the other day for surgery I am having on 5/21. Unfortunately, I just had to postpone it. He is so amazing. I told him I had a mammo scheduled for after the surgery and changed it to before the surgery so I would not have to deal with it. Turns out the ins. co. won't pay because my last appt was in June and it has to be a year. He said, the tos is important, but the mammogram screening is more important and I definitely would not want the mammo after the surgery unless it was several (5) or more months after the surgery. I thought the same thing because of where the op. will be on my neck and the pulling and stretching done with the mammo in that same area. This is who he is, so caring. He didn't have to say that, he could have said, get your ins straightened out and reschedule. Altho, he told me I will hate him for awhile after surgery because of the pain I feel sooo fortunate that he has my back and shows it. If you want to know anymore about him just post or you can do the personal post by clicking on my name and choosing. I feel for you and also wonder how much you might be missing people in Canada while you are not feeling well. Good Luck and let me know how you do.

Irisheyesmilin

Hi JKL, I will def let you know if I come down. I have faxed my paperwork to Gelabert's asst and spoken with her a bit so hopefully he calls me back soon. The only thing is, from what I remember Marc saying the UCLA system is slow, and because my time is sort of limited, I would most likely go with Angle over Gelabert if Angle believes I need the second surgery and that he can do it. I still remember the long convo I had with Angle last year and I really really liked him. I just chose a more experienced surgeon (and look where I ended up *sigh). I am not considering Thompson because I spoke extensively to his assistant last year and because of all of the negative followup experiences some patients have had with him, and because they want you to come in and do all the same tests over again even if you have done them already, and because I already chose a surgeon who is well known and deals with lots of patients and ended up having a negative experience with him....lol several reasons personally, but at this point, I would rather consider a Dr who has slim to none negative outcomes and great patient experiences despite the years of experience he has over a Dr who has years of experience and does not "individualize" his patients even if he initially says he does.

The thing with me and injections etc is that I know these are only temporary fixes and I am already experiencing a temporary fix with my physical therapy and am worried about all the meds I am on and how long I've been on them and what this is all doing to my body in the long run. I have not tried Botox but is that also temporary (a few months at most)? Who would be the best person to contact about that procedure? I don't know of anyone in the Bay area that does it. Also, how have you been doing? PM or email me I'm sorry I haven't kept in touch so well, just so much up in the air right now but I guess that is the same for all of us in one way or another
-Parbie

Hi Irisheyesmilin,

Thank you so much for sharing your experience with Dr. Donahue. I am definitely considering him, trying to get a phone consult first but no I am not in NY anymore, I am now in California. I did not choose him last time because I was already scheduled with Dr. Annest by the time Dr. Donahue got back to me and he insisted I see him and I just did not want to change my mind again after I had finally come to a decision last time. Looking back, I do wish I had gone to see him and now he is probably in the top 3 of my list because of all the positive experiences I have read about him, because he is selective, and also because he is close to Toronto so it would be easy to fly home after surgery and fly back for any follow ups.
-Parbie

Parbie, Here in L.A. Dr Jordan does them, thats who did mine- but too expensive Dr. Williams at Kerlan Jobe does them , neither marc or I cared for him, but they take insurance and I also think Dr. Molly Josephs who is Dr. Jordans shadow does them at UCLA. And if you are in O County- Marc has someone he gets them from. I would see the surgeons first and see if they suggest it or just go for the surgery. It might be something you can do for relief if you have to wait for surgery. i m' so sorry you are going through all this after the surgery.I didnt know that about Dr. Thompson. I think going to see Dr. Donohue would be a good idea, especially since it is close to your home. He is on my short list if I were going to do surgery. I have a good frend there and my family is in New York. I will send you an e-mail update on me soon.

I can totally understand where you were in your decision making last time. However, if you do decide to see Dr. D you will be closer to Toronto and to family and friends. I am so sorry for your stress and hope soon you will be relieved of at least some of it. I try to think ahead sometimes. So, just think, this time next year things could be totally different. I send you lots of hugs and love and hope to hear from you soon.
Irisheyesmilin

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.