[Sea Pines 50]

Hi, you guys, it's Alison from the old Braintalk site, aka Sea Pines. Boy, have I missed each and every one of you --- I was freakin' last summer when the board crashed. Can barely type with my left hand these days, so bear with me...

For those who don't remember me, or maybe we haven't had the pleasure of meeting up yet: I've had true neurogenic TOS for many,many years, but the diagnosis was missed, delayed, not taken seriously - you name it!! - until I finally ended up in Dr. Ahn's office a little over a year ago. He diagnosed me on the spot! Said it was very severe, PT would get me absolutely nowhere and that I needed surgery or I would lose all function in that left hand.

Some of you might remember my story, or a least parts of it. I have Gillett-Sumner's hand on the left (severe atrophy), so it seemed logical to perform the first rib resection/partial scalenectomy on the left. The exciting part was, Ahn said he was 90 - 95% sure he could "save" my hand (keep it from getting any worse, and maybe, just maybe make it better if certain muscles could be reenervated and start to grow back...who knows?)

I felt confident in Ahn's abilities as a surgeon (and still do - he has an excellent reputation); however as a single person living on my own I was drawn to the excellent perioperative care systems certain of the Denver docs seemed to have in place, at least at that time (late 2005), and so I ended up having the first surgery done with Dr. Annest.

Anyway, long story short, the operation performed by Dr. Annest on me last Nov. failed after approximately four months. I have had an MRI/MRA performed by Dr. Collins at UCLA, which according to his report showed the cut end of the anterior scalene has reattached to the subclavian artery; also compression of the subclavian vein;oh and my personal favorites - little pieces of left first rib and tiny metal clamps seem to abound in there (tongue is implanted firmly in cheek right now as I do not believe Collins is a member of the Annest Admiration Society - au contraire, mon frere! I regret to say...)

Also had a scalene block done by Dr. Jordan done at C.A.S.T., the brand new surgical center right next to Dr. Ahn's new private practice in Westwood. As predicted, the results were positive and do indicate surgery, but the good news is that no blood clots or aneurysms were found in the subclavian vein or artery, respectively. Dr. Jordan did note that part of my problem is that there is a large transverse cervical artery that cuts through the elements of the brachial plexus. This test was really interesting. I hadn't realized that they go by sound as well as visual and what is being reported by the patient.

Sorry this post is so long... I will know what my surgery date is next week, to have the re-do (which is actually a complete scalenectomy) done before Christmas. Part of me wishes I could go back to Denver, maybe to Dr. Sanders, but I dont have anyone to go with me. But beyond that, Sanders and Ahn have a very, very similar mindset when it comes to this type of surgery.

If anyone has any thoughts they want to share I would love to hear from you. I'm getting pretty nervous about the whole thing, but I know I need to take an action. Been putting this off for months and the symptoms just keep getting worse. Dr.J. is going to give me Botox on the right side to hopefully calm that side down while giving the surgery and aftercare a chance to work.

Sorry I've been away so long; I have been struggling this year and trying hard not to fall into a depression I can't bounce back from. My natural tendency to isolate when I'm in pain really is not helping!! So not helping!!

Hope you all had a lovely Thanksgiving and are enjoying a nice long weekend.

Alison