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

Hello fellow TOSers! So I think an update is due and also I am at another point where I am on a surgeon search AGAIN.

Dr. Ellis basically dropped me as a patient because he said he felt there was nothing he could to do to help me. Honestly, he dropped me because I kept hesitating about getting his heparin injections especially when I had 2 drs tell me that heparin in my neck could cause brain bleeding. After hearing that and after everything that has been going on since my unsuccessful surgery in August, I did not want to risk making it worse with a non FDA approved procedure that 0 other Drs do.

Anyway, this lead to me to find myself a new physiatrist. I was in denial about my TOS (sort of). I mean I have been consistent and vigilant about my daily PT exercises with my great therapists in SF (Red Hawk PT). But just like before surgery, PT only helps temporarily and although my flares do not last as long as before they are still pretty bad and I have new symptoms and am definitely worse than before surgery. I also have been getting worse on my left side.

So my new physiatrist saw me 3 times to decide whether she wanted to take me on as a patient. She ended up doing 4 cortisone injections in my shoulders and I got worse (didn't think that was even possible). I couldn't do my regular PT for several days and even now I have to be really careful with it. I am experiencing a lot of SCM pain and pec minor pain (nerve and muscle spasms) on the right) and I recently triggered more symptoms on my left side while doing a neck stretch. I want to type more details but my right hand is beginning to get very symptomatic. Anyway after the poor outcome of the injections, this DR said I have no alternative and need surgery. I really wanted to avoid it but then I realized I NEED to find out whether Annest should have removed my extra rib and what other surgeons think about that.

If I do go through with surgery too get the rib out and scar tissue, I will also be doing my left side because I know the longer I wait to operate on it the less likely my recovery will be positive. I also need to find ways to minimize scar tissue development since that seems to be a major cause of my recurrence and worsening of my symptoms.

Also, new Dr says my winged scapula is still there and therefore guess what, ANNEST WAS WRONG. He dropped me as soon as he followed up with me realized I was worse and wanted to make sure the nerve he injured was healed even though it is not. It is healing, but not there yet and I had a feeling he was wrong because I still have tons of pain there.

Anyway, long story short, on a surgeon hunt again to have Annest's mistakes fixed and for my left side as well. I wish I had an alternative but doing PT that helps only temp and taking tons of strong meds are not what I want to settle for the rest of my life. Also my time in CA and the US are limited now as I no longer working so I figure instead of trying to go back to work and making everything worse, more surgery makes more sense and then I will return to Canada to recover for a year or so before coming back for work or my PhD (fingers crossed surgeries go well this time in order for either of those to happen).

I am waiting on a few surgeons to get back to me, some want me to fly out and see them in person but travelling is very painful for me so I am trying to do only phone consults first. I am seeing Dr. Jason Lee in person on the 24th since he is the only surgeon in the Bay area I would consider. Then I will go from there. I really like Angle and since he is a very short flight away he is one of my top choices. I am also trying to get in touch with Pearl in Dallas and Donahue in Boston, Gelabert in LA and finally Johansen and Ombrellaro in Seattle. Oh and Brantigan too, took Marc's advice and am trying to get a phone consult with him this week.

If I do go to SoCal I think I should def see Jordan first before going through with surgery but I am also like I mentioned earlier, not working and do not have tons to spend on consult fees as I am paying for COBRA ins and everyone knows how expensive that is.

Any opinions/advice/comments are welcome and much appreciated!

I wish every fellow TOSer the best, hope you are all doing better than me or on the path to living a pain free (or somewhat pain free) life

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.

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...

hugs and love to parbie

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 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

Sorry for the long wait. I actually don't recall why I told you about plancher. He operated on me for a suprascapular nerve decompression in new york after I got misdiagnosed with that in california. Although I'm slightly bitter that he did the unnecessary operation, he wasn't the one that diagnosed me with it, it was others that told me i needed that surgery and that he was the one to do it.

That being said, he is top orthopedic doc. He operates on many celebrities and athletes, and of course he is doesn't take insurance. If I ever needed an orthopedic surgery, and i was in new york, and i had tons of cash, I'd go to him. ha.

I'm not sure he knows about TOS, otherwise he probably would have mentioned it when I flew to see him back in December.

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!

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....