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

Good Luck! I live in L.A. and I have seen both Dr. Ahn and Dr. Gelabart for consultations. I liked Dr. Gelabart much better, and would probably go with him myself,HOWEVER Dr. Ahn is the only one doing the angiogram for diagnosis and if it can accurtely diagnose, then it seems helpful. Dr. G says his outcome is 90% successful which sounds high. Not to scare you but I have heard some horror stories about Dr. Ahn. i think you will get more of a sense after you do the angiogram with him.
There was a fellow on this site that went with Dr. Ahn and got pec minor surgery with him. He was planning to go back to work and I havent heard anything from him since-JuniorCorey was his name. i have tried sending him aPM to see how he is doing but never heard back. I am guessing/hoping he is doing better since he hasnt been here. You might try to PM or send him an email. I have seen MANY PT's here although I havent had surgery and would be glad to tell you about each one. I love the one I see now-in Santa Monica, but it is not a traditional approach-(functional medicine)she works on relaxing my nerves and muscles for a full hour. She is out of network with insurance though.
I have seen Dr. Jordan too in the past. Have you found any protocol that works for you pain wise?

Hi, and thank you so much for your responses. Wish I could say that I had more clarity after meeting again with both surgeons, but the truth is I have more questions than answers still. It ain't over until the fat lady sings, I guess.

Dr. Gelabert gave me the corrected version of the written scalene block test results, which say that I flunked that test and would not be a good candidate for a R first rib resection (the one Dr. Jordan gave me was for the wrong side of the body [!] and says that I would be an excellent candidate for this surgery… Sheesh!) At any rate, I explained to him (again) that I did not really expect TOS surgery to offer a reduction in pain for me at this late stage in the game; that my concern was solely with saving my right hand from the neurologic deficit suffered by my left.

Dr. G wants me to explain this to Dr. Mollie Johnston (the neuro who administered the scalene block, simply because Dr. Jordan does not take insurance), and have her do an EMG/NCV study, to see what that showed. I told him I would only submit to that if she agreed to test all the way up behind the neck, to the C-8/T-1 nerve roots. When I met with Dr. Jordan for my regular follow-up and told him about this, he was very unhappy. Says an EMG/NCV is not a good indicator for TOS surgery and would be a complete waste of time. I tend to agree with him, although I reminded him that I've never had a normal EMG/NCV on the left.

Next appointment was with Dr. Ahn, for the angiogram. Procedure was not too painful, they administered propophyl (sp) and verset so was kind of out of it, but I know that he inflated several balloons - which means he found vascular compression in the draining veins of the neck, including the subclavian vein - and I overheard him saying "I'm not impressed" a few times, which as it turns out meant he did not find anything life- or limb-threatening, like a blood clot in a vein or an aneurism in an artery.

Surprisingly, Dr. A wants me in PT for a month or so, to try to address the considerable compression he found in the pec minor muscles bilaterally at the level of the collar bone, before doing pec minor tenoctomies. Still up in the air as to whether I should have a redo on the left first, or an FRRS on the right. The angiogram showed that the left side is definitely still the worst, even though I've had an FRRS on that side (it's been close to ten years ago now, however).

This process of selecting the right surgeon can be so difficult! To tell you the truth, I'm not feeling particularly confident about either doc right now. I may travel up to UC Davis to see Dr. Julie Freischlag once I have the results of all the tests, to get her take on things.

For now, Dr. Jordan is doing an excellent job of keeping my pain semi-manageable (between flare-ups). He would like me to try something out now called Alpha-2-Macroglobulin. Have any of you tried this, to knock out inflammation? It's a broad spectrum multi-purpose protease inhibitor with a "bait and trap" mechanism, which captures and inactivates the bad chemicals damaging your brachial plexus (I think) and causing pain. Once these chemicals are trapped by the A2M, the body eliminates them through natural mechanisms. Dr. J says he is having great success with this procedure, using it as a brachial plexus block on some of his pain patients. He even used the "C" word. (c-u-r-e) But I am a skeptic from waaay back, and this also runs smack dab up against his no-insurance policy, and cost becomes a factor.

If it works, then I might not need surgery (so says Dr. J). But somebody's going to have to explain to me how PT or A2M is going to address the strong possibility that there is a cervical band compressing my right-hand T-1 nerve root in a huge "dent," as was found by my surgeon, Dr. Annest, on the left-hand side back in 2005. It was his esteemed opinion at that time, that the exact same thing would be found mirrored on the right side of my body if and when I had an FRRS on that side. I also don't get how either is supposed to address the significant amount of scar tissue and adhesions that have built up in the thoracic outlet on the left, or are just there "naturally," on the right…

Maybe what I need to find is a really good hand specialist, to do a proper evaluation of my right hand. See how much danger it's really in of developing muscle atrophy, ulnar nerve damage, etc., from compression in the neurovascular bundle at the level of the outlet. Sigh. Why do I feel like I'm on my own here?

Onwards and upwards.

Thanks for reading; saga is to be continued!

Alison

I have had 2 EMG/NCV and neither of them showed anything related to TOS. They showed nerve problems stemming from my neck C5-6 which is finally why I did an epidural.Unsuccesful. Your case is complicated and couldn't begin to advise you. You might want to talk also to Cyclist who has seen all 3 of those surgeons. Did Dr. A refer you to DR. Chan in his office for PT ? I tried him for awhile-not impressed, but I suppose it couldn't hurt to follow up.

I have been thinking about trying Mollie Johnston also for insurance reasons, what are your impressions? it sounds like you are still seeing Dr.J for primary PM. I stopped for awile-just too pricey and didnt seem like he could do anything else for me at the time.I havent heard of A2M but am curious and will research it. I havent had much luck with anti-inflammatories. Has he had success? I am looking for something to prevent flare-ups if there is such a thing. I have an appt with the PM dr I have been seeing-Dr Aufiero at Orthohealing on Wed. morning, I will ask her if she knows anything about it . she does Prolotherapy and PRP etc and is usually up on the latest techniqus and knows Dr. J. If you want more PT info-PM me and we can also talk by phone.