Quote:
Originally Posted by Sea Pines 50
Hee hee, just wanted to get your attention for a moment!  I am scheduled for an angiogram with Dr. Sam Ahn tomorrow in Los Angeles, and just wondered if any of you have had that procedure done, for diagnostic or other purposes…
Trying to decide if I should go for (i) a re-do on the left (had a first rib resection in 2005 with Dr. Steve Annest, which has gone south) first, which would include a complete scalenectomy of the anterior and the (reattached) middle scalene muscles, as well as, I'm sure, a great deal of lysis and neurolysis to address all the scar tissue and adhesions which have built up over the last ten years; or (ii) a first rib resection on the right, to try to "save" my right hand from the severe atrophy of the thenar and interosseous muscles which my left hand suffered in the decades it took to get my 'true' nTOS dx. Don't harbor any hope at this late stage that TOS surgery is going to do squat to lessen the severe chronic pain, which became centralized a looooong time ago. But hey, if it does, I'll be pleasantly surprised! 
I'm hopeful that the angiogram (and Dr. Ahn, of course) will help me to decide which TOS surgery makes the most sense for me at this point in time. I have sx on both sides, although there have always been more obvious visible signs of neurologic deficit on the left, due to the appearance of my hand on that side. But I'm right-handed, and the thought of my right hand becoming anywhere near as useless as my left scares me. A lot. 
The other question I need to decide is whether to go with Dr. Ahn or Dr. Hugh Gelabert.  Does anyone know their stats on re-dos, by any chance? Although my case started out neurogenic, it has morphed into neurovascular TOS. While I don't personally subscribe to the notion that TOSers need to see vascular surgeons for vTOS or aTOS, and neurovascular or thoracic surgeons for nTOS, I would be interested to hear what you guys think.
Traveled to Denver for my first TOS surgery, simply because better aftercare was offered there at that time. Now that I know how to put that piece together myself, I think I'd prefer to have this next surgery where I'm going to be recovering. (And where my pain management guy, Dr. Sheldon Jordan, is!  )
For all you Angelinos out there, do you have a particular PT you've used post-op for TOS that you like? I'd love to hear about the protocol they used, if you wouldn't mind sharing that. I live in Sherman Oaks, so Orange County is too far to commute for PT on the daily… but I am looking for recommendations within LA County for bodyworkers, PTs, etc. to see after the surgery.
Thank you so much! Wish me luck tomorrow.
Alison |
hi Alison,
Well you certainly have my attention with your cervical lordosis! Sorry can't add be much help with information as I'm from Australia. I have had an angiogram for diagnostic purposes, sorry to say it was very painful but I think that's probably because of my CRPS and spinal pressure. They were looking for an spinal arterial venous malformation which seemed to be presenting on MRI. I'm in a similar situation to you with my RHS TOS, however a redo would not be an option here as I believe it was the surgeon's lack of skill that caused the failure in the first place and he was recommended as the most experienced available.
Regarding the benefits of surgery when you already have central sensitisation, I think there can still be benefit in interrupting negative feedback loops. For myself, on the LHS I had TOS and long thoracic nerve palsy with nerve entrapment at the front. By the time they operated removing part of scalenes and rib, I'd had undiagnosed CRPS 3yrs,16 yrs ago. The operation did help reduce the pain caused by the entrapment a the front triggering the CRPS. So while the CRPS and long thoracic nerve palsy remained the brachial plexus was no longer entrapped. I suppose the important question is how much benefit is likely from a redo if there is no likely entrapment? For me, my NS put the case for a SCS partly because of central sensitisation. Also, we don't have the range and quality of surgeons doing TOS that you do. If you have the chance at a redo where there is a likelihood of a good outcome that would be great!
The prospect of losing more function in your right "good" hand I imagine is very scary for you. I was in a similar situation, but unfortunately my putting off the surgery a further 13yrs ultimately only added to the degree of difficulty. By the time I had the surgery the rib had been pulled right up and there was little room to work in contributing to the ultimate outcome.
Good luck and please keep me posted! I would love to hear how you get on.
Hope your surgeon has the knowledge and skill to answer all your questions.
Booklover