[Sea Pines 50]

i remember dr. steve annest telling me this was the number one risk of the transaxillary approach, or perhaps just the TOS surgery itself (frankly, i was so gung ho @ that moment i probably wasn't listening to him all that closely, more like "yeah, yeah, sure, sure...and could your eyes BE any more blue, d'yuh think dr.?" - but alot of patients end up "numb" in that area, or can have the type of hypersensitivity you are both describing, i think.

obviously, dawn is a little further out in the healing process than is johanna. but we TOS'ers want what we want when we want it, don't we? we simply don't rock with the snail's pace at which these nerve injuries insist upon healing themselves...

i am far from expert in the area. but i am a shivering wreck, as the brits would say, so i suppose i qualify from within, if you will, on that basis alone. nerves grow back v e r y slowly. di used to post about this, frequently (help me out here, friend di - is it only the ulnar nerve that grows at a rate of 1/8" a month, or something along those lines?) rate could be even slower, for those teeny tiny ones, and i would think the worse the injury or compression, the longer the healing time, too; the ulnar is one of the "big 3" we're all familiar with (and for the WRONG reasons, i might add!).

there is a very kind radiologist originally from new zealand practicing in beverly hills by the name of dr. david campion. (i call him my champion, for it was he who raised the reg flag in my own case and queried in a set of electrodiagnostic tests ordered by a certain pain doc at cedars who will remain nameless "has anyone ever tested this woman for neurogenic TOS?" and thus began my journey to ahn to annest and to you good people... but i digress). dr. campion very gently said this to me when looking at my wasted hand:

"don't EVER give up on your nerves."

and that's what i wanted to pass on to you guys today.

that is precisely why i don't listen to doctors like weaver when they say negative things that try to take away my hope, things like "your nerves aren't coming back, you know, ms. ayers...". because of my champion and because of the simple fact that the human body is amazing, he is absolutely right; your body WANTS to heal.

it is your job to give it the right environment, the proper hydration, nutrients, rest, massage, nerve glides (gently, now!), desensitization techiques (soft flannel to terrycloth to lufa to different grades of brush; lots to read up on), whatever you can do to encourage the natural healing process along.

oh, god i smell another thread coming from hojanna now.

people, we've created a monster...

alison

i'm not judging! i'm just saying!....

[dawn3063]

Originally Posted by Sea Pines 50

we TOS'ers want what we want when we want it, don't we? we simply don't rock with the snail's pace at which these nerve injuries insist upon healing themselves...

Alison,

You sure hit the nail on the head with that comment!!!!
Thank you for all that information... I know they said that the nerves regenerate and grow very, very slowly sometimes over years...
I guess as the old saying goes "Patience is a virtue" Ugh..Sometimes I hate that saying...


Many Hugs and Thanks again...

Dawn

Oh, Ya.. I start Bio Feedback tomorrow... Yea...

[redjpwranglergirl]

I haven't had the TOS surgery and hope I never have to but I can add something here as far as nerves coming back after surgery- this isn't to discourage anybody! This is just what I've found to be true for me. I had a surgical procedure back in 1991- I still have completely numb spots in that area....On the same foot that I had surgery on in Apr. of this year, I had my second surgery on it back in Apr. of 2005, and the area around one of the incisions is still completely numb. I can sympathize with all of you having this nerve pain after surgery because I had a very tough to go through abdominal surgery in Feb. of last year and not only were nerves cut but the areas where I was held "OPEN" with those clamps were excruciatingly painful for several months- in fact, more painful than the surgical incision itself and part of that area is still numb.

[Sea Pines 50]

please, please, please re-read my PM to you. i am so glad you've found us. but i want you to take very seriously everything i said to you in that message. i stand by that and i will say more here publicly on this forum, as i am VERY concerned about you now. i am also angry - not at you, bev, not at you, but angry nevertheless - just so you know.

i don't wonder you're confused. but i need you to hear me now. the decision to have TOS surgery is never one you want to make when your pain levels are this high. no way. it's supposed to be ELECTIVE surgery and carries major, major risks which you need to educate yourself about so that you can make an informed decision (including but not limited to, the best surgeon to do the operation on you). these jokers are feeding you a line of pure bull, in my eyes.

you need to get yourself to a top PM doc ASAP (that is, a pain management specialist). what part of the country are you in? this is a very important question and i do not ask it lightly. please answer, so that we can get you some proper care. are you near a major teaching hospital of some kind? perhaps there is a big pain clinic attached and that might be a place to start or a good jumping off point. if you've ever been in physical therapy and have a trusted therapist that person may be golden - they usually know who the good PM docs are.

surgeons are not only knife-happy but they stick together. bigtime. if these guys are so damned good, i'd like to know how come they're only just now figuring out that you have a set of cervical ribs big enough to cause neurovascular compression serious enough to make you this symptomatic. wasn't a simple cervical X-ray taken, for god's sake, before the fusion? TOS can be a controversial dx, granted, but if your all-of-a-sudden, brand-spanking-new medical dx is "true neurogenic TOS,"...well, my new friend, then you do NOT have the disputed form of TOS and ALL of these so-called "great" surgeons are doing nothing but dancing as fast as they can.

WHAT makes anyone think your poor body is healed enough from any of the major surgeries it's been subjected to for the MISDIAGNOSED problems over the past two and a half years to undertake something as major and as risky as a cervical and possibly a first rib resection and a partial scalenectomy, pray tell? what is the name of this "great" cardiovascular dickhead surgeon? spill it, beverly, c'mon now! (we're going to get you to the best, most experienced, most wonderful top TOS doc possible, so don't even worry for a moment, i am just venting here... you don't know me very well yet - i'm just mad for you, not at you my dear!)

ask yourself this question: why was this not seen before a 3-level cervical fusion was done, beverley? (and out of curiosity, when was that surgery performed, in the 2.5 year nightmare you are describing?) now, i don't want you to feel bad, there are lots and lots of us who have had unnecessary carpal tunnel and cubital tunnel releases as well as cervical fusions before FINALLY getting dx'd with the actual culprit, dread TOS. unfortunately, those prior surgeries do nothing to increase the odds of success of tx for the TOS, whether that be a surgical or less invasive intervention by the time the accurate dx is ultimately made and competent tx able to be undertaken with knowledgeable practitioners on board. let's be honest, they mess with success.

you've just had an ulnar nerve decompression with transposition 3 weeks ago (!), and i hear you saying the neurosurgeon who did you that great disservice thinks a rib resection sounds like a wonderful idea. bet he plays golf with your CV surgeon. this is madness, i say, pure madness. the ortho guy is in on it, too, believe you me...they're all running scared and gonna back each other up hoping you don't wake up at the switch. this just gets my back up, something fierce! i hope i'm wrong, but i don't think so.

it's counterintuitive for you to commit to more surgery right now. it's way too soon and you haven't healed from the last one. i know you're in a great deal of pain, beverley, i totally believe you, really i do. but something stinks here. but first things first. let's get the pain under control, then we'll see where you're at. does that make sense?

your statement that you "want to die" is very telling to me and extremely troubling. i want you to know, i hear you. i think many of us on this forum hear you LOUD and CLEAR on that one. we are here to help you through this. we are RIGHT HERE. you also state "i am out of my mind in pain." i, for one, know exactly what you mean when you say that; i've felt the same way myself many, many times. my TOS went undx'd for almost 3 decades. i've been to hell and back with this thing.

please don't rush into surgery. it's not a guarantee of anything, and certainly not of pain relief. if anything, the opposite is true. they're no doubt promising you the moon right now, beverley, either that...or that's what you're hearing, because you are desperate.

don't do it. let's find you a PM doc. cancel that surgical consult. you're not strong enough yet emotionally or physically to withstand TOS surgery.

and i for one am not buying what they're trying to sell you.

you deserve a lot better than this.

and better is out there, beverly. please trust me on that.

i am not trying to take away that glimpse of hope you spoke about. actually, quite the opposite! this is a really good place for you to be right now. i want you to call the number i gave you; i have so much to tell you.

and stay close to the board. it's going to be a bumpy ride.

alison

[johannakat]

Beverly- I have to agree, that it does not sound like you are prepared to handle rib resection surgery at this time...

Having just done it myself and going in with "excellent" prospects and absolutely no other complications...I still feel like a train ran over me.

If you can share any more details about your experience, maybe it will make more sense, but something does sound odd.... surgery decisions like this require sound thought and thorough understanding of your personal situation (maybe you have this and I am mistaken). I Second the advice that pain control is an excellent first step. there are many here who have made hasty surgical decisions while in severe pain, and lived to regret them....

[Jomar]

Beverly -I pretty much agree about not having another surgery so soon.
You need some decent pain control for starters - so you can think over your options and the pros and cons of another surgery.

SeaPines makes some good points about those doctors possibly taking the long route to finding the real problem for you. Are they all in the same area, office, hospital or friends?
Perhaps a second opinion from an outside doctor?

The risks of more surgeries are possible scar tissue problems and a possibility of RSD.

Some thoughts-
do you think you had TOS before all of those surgeries?
OR could any of those other surgeries caused TOS or aggravated your TOS?

Pain management-
yes - your pain is not being controlled at all - that is the # 1 thing they need to do for you right now - so you can step back and really think about the surgery options- pros and cons.

[dawn3063]

Alison has given you some very good advice. I have known her for some time now personally and thru the forum and she has helped me thru some very difficult times. It is so hard to make a decision when you are in such pain. I know I went forward with my surgery at a blink of an eye and with a very reputable surgeon and if I could go back I would have tried a few other options first like finding a good TOS physical therapist, pain management doc etc. Now I have two TOS surgeries done and I once again per my PT have large amounts of scar tissue building up under my axilla and her comment is no wonder your ulnar nerve is so irritated. It looks like I am very prone to scar tissue and my surgery was the end of January. I am also being treated for RSD and many TOS pt's that have surgery run the risk of RSD so please be cautious RSD is not something you want to develop. If you think TOS is bad RSD is its arch enemy.
Please head the advice of my forum friends and seek some further consults...
Johanna went to many doctors prior to her surgery and she did a great thread on them: http://neurotalk.psychcentral.com/sh...p?t=135&page=2
In the end you will be glad you did...
Best of luck to you...
Dawn

[Jomar]

For Beverly-

our useful links thread - http://neurotalk.psychcentral.com/showthread.php?t=84

drs list thread- http://neurotalk.psychcentral.com/showthread.php?t=135

[Stardust]

Like G-Mom, can't spend much time on the computer anymore, so will try to keep this brief. (Isn't it funny how TOS affects us all differently, and some can use the computer and some can't?)

Am still trying to control my pain with exercise, yoga, hot baths--and most importantly staying away from the computer.

Dawn and Johanna--So sorry to hear you aren't feeling better than you are....I think about you (and the others here) and look for your posts as often as I can to see how you're doing. Dawn, it's so disappointing to hear that the blocks haven't helped. Are you giving up on them now? Johanna, did your mom leave today? Hope you're holding up okay. And DiMarie, Horizontal, Beverly....thinking of you all.

Trix, it's wonderful to hear about a surgery that has been so clearly successful! And to think that you can even consider going back to work--truly amazing. I'm so happy for you.

Allison, thanks for the reminder about nerve regeneration....And you're the second person I've heard say wonderful things about Dr. Campion.

Jo, thanks for the link....you're just incredible.

And to everyone else....hope you're doing well.

So much for keeping it brief.