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
