Martha- I have asked that question regarding surgeon....the answer is that they always do procedures together. As far as I know, (and I have asked specifically) Dr Reil is not doing surgeries on his own.

Will he Be Dr Ahn's understudy for this? I don't have an answer. I might bring that up again on monday morning. THere is no way to get one without the other, though.

As for the blocks, I rememebr stardust telling me when she went for her consult with Dr Ahn that Dr. J was just teaching him how to do the blocks himself.

JO- I am honored that these crazy ramblings are to be included in a sticky, thanks


One thing I have always strived for in my life was to become a more efficient and direct writer. Not really there yet, so unfortunately this thread takes longer to read than it might have otheriwse.

Johanna

I stayed in the hospital for 4 days and needed each one due to complications. My surgeon wanted me to stay a 5th day, but I wanted out!! I hope that your experience wil be better than mine as I was at a teaching institute, hence some of the minor complications. But my surgeon was great, and I am pleased in the choice I made to stay close to home to have my surgery doen.

I may have had different symptoms and a more severe case than you, but want to share that it took me 6 months before swelling was down and I could function in a semi-normal capacity. I am 18 mos. post op and vascularly I am much better. Still experience significant pain in wrists and arms, also stabbing back pain. NO relief there!! Also, still unable to function as before.

However you are much younger and sounds like you got a handle on this way before I did.

Good luck to you, and thanks for sharing your research and story. It is a monumental task to write all this down for the rest of us and it is greatly appreciated!!!

Cala

Regarding Dr. Jordan teaching Dr. Ahn to do the scalene blocks: actually I don't know that for a fact, I was just wondering if that was the case, since they work together in the same office, and previously it seemed as though Dr. Jordan had done everyone's blocks....But reflecting upon it further, don't all of the TOS surgeons do blocks and use ncv/emgs as part of the surgical process anyway??

Anyway, thanks so much for all the effort you've put into this. The info you've provided is absolutely invaluable for those of us who are still deciding about surgery!

Dear Johanna,

I also want to thank you for doing such a thorough and fabulous job, and for sharing so generously with us the results of your research and the journey that took you through the thought process and the emotions that went along with it. Absolutely fascinating stuff - an amazing contribution and well done, indeed.

It takes courage to ignore the somewhat overwhelming (and I'm not saying, undeserved) "Denver bias" this board has perhaps inherited from Braintalk roots, and to just go with your gut and what feels right for you and your own case. For each particular TOS'er presents differently, I think we can all agree that has long been part of the controversy and part of the difficulty historically, from dx to tx. We didn't create the problem and we are not going to solve it. Whether and when to have TOS surgery, where and with whom, remains a very personal, very private decision.

The fact that you've shared it here and given us such benefit and insight is extremely powerful and touching. I think it is just incredible.

I just wish you would learn to spell. Have you not heard of spellcheck, girl? How about Mozilla Firefox? (OK, it didn't take long for that left hand to come out, did it. Sorry about that! You know I mean well!)

Also, just a general comment for what it's worth. Drs. Ahn and Jordan are not in practice together, guys. They do have patients in common, that is for certain, and one day a week or so Dr. J. does perform certain diagnostic procedures and intervention techniques (such as scalene blocks, SGB's, botox injections, etc.) both at the C.A.S.T. facility a couple doors' down from Dr. Ahn's private practice and in a shared office at the same address depending upon the particular patient's insurance I believe - but their respective practices are private and distinct from one another. They are colleagues.

I believe it is true that Dr. Jordan showed Dr. Ahn how to perform scalene blocks, at around the time Professor Ahn departed his long tenure at UCLA in April of 2006 and opened the Westwood offices with Dr. Reil et al; however, I can tell you that in certain cases he still refers patients to Dr. Jordan for such blocks. I know this because when it became clear in my own case that I was having complications from the left rib resection performed by Dr. Annest in Denver, rather than doing the scalene block himself (which he well could have done), Dr. Ahn preferred me to see Dr. Jordan for that. Presumably, that was because it was a bit more complicated due to a long a complicated history, extremely delayed dx and the fact that I had already had the first operation. I also, like Johanna, have the extra cervical arteries transversing the BP and cervical bands indenting the C-8/T-1 nerves, which add to the mix. (And by the way, I am not casting aspersions or blame against Dr. Annest or anyone re the complications I have either, it happens in a certain % of cases, unfortunately. TOS sucks!)

Interestingly, and this is just a footnote (and to me a testament to Dr. Ahn's great clinical skill), back in Sept. of 2005 when he first dx'd me in his UCLA offices he did not even NEED a scalene block. Just held my arms and wrists in certain positions familiar to many of you and, having reviewed my history, went "hmmmm" a lot, ultimately saying "Yes! True neurogenic TOS - Very severe! Bilateral. You need surgery (I don't say this to too many people on the first visit; you can go have all the PT in the world, it's not going to help you...)."

And so I rewarded him of course by going to Denver...

Thank you again, Johanna. You have helped a lot of people. Rest now, will ya please?

Alison

I think that is a good idea on this thread too.

Those that have been found to have extra structures or structural anomalies to mention those like Allison did.

Maybe how they were found also?
By imaging?, or during the actual surgery?

Just so that when others are reading this later on for knowledge they will know that our bodies can differ from the norm by having extra parts or the "wiring", or "plumbing" can vary a bit.

Johanna,
Thanks for taking the time to share all of your TOS symptoms, Dr Visits, tests and your personal thoughts with us.

I have many times felt this board and braintalk were a lifesaver, but also the Boards could cause me extreme anxiety in my decision making over what I should do surgically.

It's so refreshing to read all of the details of what you have strived to learn and tell us about TOS and your Medical Evaluations. We all owe you a big thank you!!

Best wishes Monday, Ihtos

All the praises...
Don't let your head swell too much or it will fall off the surgical table.

Ahhh...really
You did a FAB job on documenting, researching and just everything.
I wish you bright days ahead, my friend.
Hypnotherapy works great!

Thanks for the PM!
nit-nit and sweet painfree dreams of floating on an air plillow or swimming like a dolphin in the cool ocean.
XXOO

Johanna,

Thanks for all the information you've provided for all of us TOS'rs. The research was excellent and now you can go into surgery feeling confident that you've done your best to choose the right surgeon for your surgery.
Tomorrows going to be a great day.

Kudos,
Hope

I'd be a lot of nowhere without what i have learned on this forum from all of you.

sweet dreams and happy days ahead, hopefully we'll be better.

Johanna