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

hi allison and welcome to neurotalk.

good luck on your surgery next week. i'll keep you in my prayers.

Curious

Allison hi!

so sorry about the complications, i guess you never can tell what will happen after these surgeries. Sometimes weird things seem to happen.
But you don't have RSD right?? that's a big plus!

It sounds like the 2 docs has clear views of what needs to be done - that is very good.
Glad you found us here and posted, I'm sure more will pop in to say hello "again".
If you have any email for any other tossers send them a link to here -OK? not all of the old gang have found us yet.

So is there a plan so nothing will attach to anything again- I guess if it is all out nothing will be loose to do that huh?

Hi
Hope everything goes well with your surgery and u have a great recovery.

I thought now it was a norm to do full scalenectomy. Don't leave any stub behind. But I guess, everyone is doing it a little differently.

Clean surgical wound, minimal to no blood, cutting away of all bands that might be criss crossing Thoracic outlet is what they are talking about.

Are they going to use seprafilm to reduce the chance of re-adhesions?

Khan

It's good to see you on the forum again.. I hope that you are able to get thru your surgery with out any glitches.. Wouldn't it be a grand Christmas present to have a wonderful outcome.. I think the last time I spoke to you I was going for a rivision of my failed cervical fusion which I had surgery on and am recovering from at this time.. I am still having my headaches and neck pain so time will tell.. I had a repeat neurography in Sept for the right brachial plexus that I had surgery on back in January of this year. I started to have pain and numbness in the right arm again. My report showed developing adhesions and nerve irritation. My surgion told me that he may need to go in and clean up the adhesions and use a double dose of seprafilm to help prevent the reoccurance.. I see him this week to discuss the options.. I still am having problems with the left brachial plexus but that will have to wait..
If you can PM me with your e-mail address.. My laptop went down a few months ago and I lost a few addresses.. And one of them was yours..
Keep us posted on your surgery date...
Your in my prayers..
((Hugs))
Dawn

Alison- I am sorry that you are having to go through a redo.. what a bummer!!! I am thrilled, however, to find someone else working with Jordan and Ahn...I really thought I would run into more like that on this board, since I was led to believe by my orthopedic (Dr. Mealer) that they were real experts in the field. (Dr. Jordan is not even on the reccomended drs list...which had me worried)

I was diagnosed with TOS in June, combination Repetitive stress and sports injury, well, if you can call yoga a sport.... I have been to see Dr Jordan a few times now, had a nerve block and a few weeks later Botox (also at CAST...that place is pretty cool!) done with only minimal success. I think I react poorly to the needles...I get so much pain and swelling from the injections that it masks the benefit of the injected substrances. Did Dr. Jordan give you any idea of ho bad your TOS was from his ultrasound imaging? He doesn't really quantify it..when I asked he said "yeah, it's pretty bad"

I have my second botox follow up with dr jordan on Dec 4 and i think he is going to send me to see Dr Ahn for evaluation. : ( I am not too exicted about the prospect of surgery but i'll wait to dwell on that until after the evaluation. Have also been exploring chiropractor and hellerworker as alternatives. Not sure how far that will really get me but since it doesn't involve cutting me open I am all for it.

What part of LA are you in? I am in the South Bay.

Johanna

Alison,

I'm sorry to hear of this.
I hope it goes well for you - rapidly healing - no complications.

Hope

DEar Allison- My last post to you disappeared as I was typing it--I think I hit a wrong key. Allison, I am concerned for you. Please be careful. Dr. Jordan ruined me with BOTOX. I believe those 2 are making lots of money from it--and from diagnosing TOS and treating it. Be careful. The long term effects of these surgeries is NOT good. I am a case in point at www.sonic.net/bjj
Putting Botox in right after a surgery is NOT a good idea. Jordan makes LOTS of money from his Botox injections. Putting Botox in a prior surgery site is warned about on the label. Dr. Jordan needs to be stopped. I had a website devoted to his BOTOX damage--as he used unlabeled Botox on me from his Refrigerator--each patient is supposed to have own Botox vile--with a LOT # to track it down if a problem later. Jordan--Ruined my prior surgery outcome by BOTOXing it. He botoxed muscled I asked him NOT too--like my TRAPEZIUS--causing my mildly winged scapula to drop on the airplane next day coming home, causing BONE crushing pain down arm for MONTHS, causing me to seek another surgery to try to FIX the RUINED BOTOXED area 1 and half years later cuz I couldn't recover.
Please stay away from Dr. Jordan is my advice. If he harms you --that is it--It is FAR too radicle to BOTOX a patient like you or anyone after a TOS surgery. I have NO respect for Dr. AHN or Dr. Jordan. It think the Medical Board should STOP Them and put them both in JAIL. TOO many lives are ruined by them. They are making far too much money hurting people in my opinion and people I know who have had surgery by them. Please don't be their next victim. Is Ahn still doing surgery at UCLA with his new private practice or did UCLA kick him out yet. Do you know UCSF no longer performs neurogenic TOS surgeries due to 15 years of NOT very good results????
Please stay away from Denver too. Can you call Peter Edgelow?? I hear he is having better results with conservative therapy in Hayward Physiotherapy Associates. Please think about this surgical path---if you must you must if you might lose your arm--but UCSF is only doing Vascular TOS surgery I heard...and Messina has left. Best, Triste---P.s. my neck is so damaged by TOS surgery with G. James Avery at Ca Pacific Hospital that now my soft pallate/neck/ throat is collapsing in on itself and my breathing is obstructed. I may now have to have a tracheotomy to stay ALIVE. BEware of these surgeons please. Get some opinions from someone who has seen a lot of these surgery outcomes but is not involved in the PROFIT of them. Best to you. I know you are uncomfortable--but please don't end up like me.

Wow, thanks to everyone who read or responded; it feels so good to hear from people who understand what you're even talking about with this TOS monster! I want to see if I can answer some of your questions because they really help me to think these things through, and maybe they'll help somebody else as well (or at least give me an excuse to keep whining, ha ha):

Jo55 -- I do carry the diagnosis of CRPD but shhh...quiet!!...so far it's been behaving itself, no better no worse since my surgery a year ago. As far as the doctors having a clear view, I wouldn't want to risk stirring up this nice new board but girl, I could sure tell you some stories about the controversies I've run into with different TOS docs this past year. Some of it is political, as in the UCLA vs the Cedars vs the Denver docs vs some lone maverick doc in Montana, some is professional, some is wicked personal, and all of it is of course very counterproductive to the poor patient. And confusing!

Khan -- You are so right, everyone does do this thing a little differently (that's probably an understatement if you're talking about the surgeons!). But as far as I know, having a complete scalenectomy done the first go-around would be pretty radical and, therefore, unusual (am I missing something?). I do know that Dr. Annest (who did my first surgery), using a transaxillary approach, routinely cuts only as much of the middle and anterior scalenes as he must in order to take out the first rib, and then reattaches the cut end of the middle scalene to the cut end of the first rib in order to leave a smooth surface for the nerves to glide on. Dr. Ahn cuts about 25% of the bottom end of the scalenes and leaves them both to atrophy up the side of the neck; otherwise they're pretty similar. Both surgeons are very careful to remove as close to 100% of the rib itself as they can get, as leaving a stump can cause it to grow back and foster a recurrence of problems. Then there's Dr. Filler (Dawn's surgeon), who, unless I am mistaken, is more likely to perform lysis and neurolysis with partial scalenectomy as indicated using a supraclavicular approach, leaving the rib intact. But what the heck do I know, really? I'm just a patient, and each case I'm sure has to be evaluated on an individual basis. Thanks for asking about the seprafilm; I'm putting it on my list of questions for Dr. Ahn.

Dawn -- So sorry to hear you're still having trouble with those horrible headaches and intractable neck pain. Those are two of my worst symptoms, too, and I'm working with Dr. Jordan to try some new things, as it's doubtful the TOS surgery's going to break the cycle. He did some facet injections at C-2, C-3 and C-4 a couple of weeks ago, which didn't do anything but did tell us that we're dealing primarily with muscle pain. So I guess Botox is the next step. Hey, I read somewhere that they have to throw the vial away once it's opened, so I'm going to ask the doc to inject any leftovers into my forehead wrinkles instead. I can do that, right? Or just turn around really fast and say he's got bad aim? It's waste not want not, darn it! I need your phone # - going to email or PM you my info, OK.

Johannakat -- So nice to meet someone with docs in common! I've been hearing about Dr. J. for a long time, but always was told he didn't take insurance, so I never contacted him (which turned out to be me, outsmarting myself once again). Came to find out he does take workers comp cases, and Medicare as well... but the best thing as far as I'm concerned? He's a pain management physician AND he understands TOS! I've been looking for that combo for over a year now; it's not easy to find, even in a big city like Los Angeles. So, Dr. J. definitely belongs on the list of recommended doctors, assuming he has no objection to having his infomation posted on this site of course. Also, Dr. Ahn's and Dr. Saxton's information needs to be updated, as both have left UCLA and gone into private practice. I think I'm about to have a whole lot of time on my hands recouping from surgery, so maybe I can get that together for Mark via email. After the holidays you and I should try to get together for coffee or something - I'd love to meet you. Maybe we could schedule doctor's appointments on the same day and roughly at the same time or something (I live in Sherman Oaks but most of my M.D.'s are on the West side) and hook up after that. No, I know! We'll hook up before our appointments, be late together and keep the doctors waiting two hours like they do us! Right? (kidding!...I'm only kidding!!...)

Hope everyone enjoyed the long weekend and is feeling relaxed and relatively pain-free.
Alison

I have seen Drs that were posted in threads that were not covered under the Drs. Sticky List at the top of the thread page... it is difficult to find/monitor all threads for new doctors that need to be added to this list and I ask if you would send this info. directly to me via. a PM to DDayMBB,
when doing so I ask that you provide Drs, name, specialty, address, phone number and E-mail address if known thank you DDayMBB it would make it quicker and easier to get it up on the board quicker also one other request is to make sure the Dr or PT you want added is not already up on the board, unless there is a change of address, phone number etc. again please PM this info. to DDayMBB


~~~Mark-n-Goober~~~