TOS-finally diagnosed need real info
 

I was diagnosed with TOS in January of 2007, have gone through all the testing,(since Sept. 2005) been through the "shuffle" (and still going through it). I was finally referred to a Thoracic Surgeon here in L.A. (one of the top guys) who stated that I was a canidate to have my first rib removed and if I wasn't ready for that was also eligible for Botox injections (bilateral). I left his office very frustrated due to lack of information given. I have since tried to get info on the Scalene Botox injections and am having a hard time finding consistent, reliable info. I would love to hear from someone that has had the bilateral Scalene Botox injections. I was told they last 5-6 mos.???
I have also read in another TOS forum that there is surgery without removing the first rib? This has not been explained to me, I was told the first rib should be removed and then in 3-5 years another surgery would be performed from the top to remove what couldn't be reached through the armpit????
Also..has anyone tried acupuncture and medical message for pain relief?
I would greatly appreciate opinion and input... Thanks.

Welcome and someone should be around soon to get you to the TOS forum.

i'm afraid I can't link you.

But I wanted to welcome you.

Donna

Hi Mimi! Welcome to Neurotalk!:)

hi mimi

here is link to our tos forum.

http://neurotalk.psychcentral.com/forumdisplay.php?f=24

a great group with unfortunatly lots of exeprience dealing with the sureries and therapies for tos. i'm sure they can help you.

Hi, Mimi! Welcome to NeuroTalk!

I don't know much of anything about TOS, but I do benefit greatly from therapuetic massage. It may be worth trying just to see if it can offer you some relief.

The surgical options see so extreme to me, I think I'd be willing to try almost anything else first.

Hello and Welcome
 

sorry to meet you like this, but i do hope to see you over on the TOS board. you will find lots of information linked to that forum, including answers to the specific questions you've asked in your post.

i live in los angeles, too, as do a few other members (all of us have had TOS surgery) - and yes, of course it is a last resort... but by no means is it the end of your tx, either! so you'll meet people who can give you some excellent local referrals, to bodyworkers, PT's, OT's, top TOS surgeons for second opinions, the whole 9 yards.

speaking of which, i have to say, i mean no disrespect to your surgeon but i am not aware of any thoracic surgeon practicing in LA who is considered among the "top docs" doing TOS surgery... or in the western part of the US, for that matter. it is a VERY exclusive club and an extremely short list. i can think of 3 here in LA. and they are all vascular surgeons. again, i mean no disrespect to the one you saw.

there is an excellent PM doc in santa monica with a background in neurology who does the botox injections. he specializes in tx'ing TOS patients and we just adore him for the amount of time he spends with us answering our questions and for the tremendous breadth of his knowledge. i personally have a terrible crush on the guy. but shelley is trying to steal him away from me. and she is MARRIED. :D shameless; good thing those pesky medical ethics (and his own happy marriage) get in the way or hair would be flyin' - i'm telling you!

the type of TOS surgery generally depends on the surgeon and, one would HOPE, where the neurovascular compromise is occurring in your particular case. some take the first rib using a transaxillary approach; others use a supraclavicular entry (just over the collarbone). in order to resect the rib the anterior and the middle scalene muscles must be divided as well because they are anatomically attached to that osseos structure. most surgeons will leave those muscles to then atrophy up the cervical spine, but my surgeon (dr. steve annest, in denver, CO) reattaches the middle scalene, to leave the nerves a smooth surface to glide on he said...).

the additional operation you are talking about is a "re-do," comprising a complete scalenectomy. if the first rib resection is your first TOS surgery then you would only have that done if you have a relapse of sx. and vice versa. however, there is one top doc in LA who i believe goes ahead and takes both the first rib AND the scalenes out with the first surgery. the man abhors redo's! they are very difficult operations, due to scar tissue... the enemy of every TOS'er. dr. richard sanders in denver is the guy to see if you're interested in exploring a scalenectomy versus a rib resection as the first line of attack from a surgical standpoint. he WILL take the rib if he sees it as part of your problem once he's in there, though, so know that...

but if you'd like to avoid surgery or at least buy some time while you are absorbing information and garnering needed support, mimi - you have come to the right place. we can hook you up with a TOS-savvy PT (this is KEY, as the wrong one can actually do you more harm than good!:() and help you to add other elements, like postural work and breathing techniques to that program - i think you will be surprised. even if you do decide to go under the knife it will all stand you in good stead at the end of the day ;).

well that's enough outta me and i do apologize for boring everybody else :rolleyes:, but i wanted to give you a taste of what you're in store for if you do fall by the TOS forum. and we would absolutely love to have you!!! PM me and i'll give you my phone number. i am so sorry you've had to struggle with this nonsense. all the testing, fighting to get clear information and so forth on top of the pain and other sx of TOS i know from personal experience is just SO not fun.

but you will find some good support here and great access to information. if you can stay away from shelley that is. that girl is just t.r.o.u.b.l.e.!! don't tell her i said that. she is sooooooo sensitive, mimi.:o

:welcome_sign: :thud: :Wave-Hello:

alison
"Be Brave"