[dawn3063]

Beverly,

Welcome to the TOS board... You have come to the best place for support and information... I've been here for a long time and I have made some of the greatest friends or I should say family... I have also been thru 3 surgeries in the last 2 years and also have bilateral TOS. I had a cervical fusion that had failed and had been repaired Sept last year. My TOS surgery on the right has been done twice now and I am now being treated for RSD in the right arm...
I have also applied for SSD I was turned down twice. After my first denial I had obtained an attorney I was turned down again and now I have my ALJ hearing coming up on the 14th of this month. My attorney said that I have very strong medical evidence and I have a very good chance of winning my case. SO if you don't have an attorney... Go obtain one now... It cost nothing unless you win and Boy is it worth it... I am so glad I didn't have to deal with paperwork etc with surgeries and pain...
Keep us posted on your up and coming surgeries and procedures and Best of luck in your other hearings...
I am sorry to hear of your financial hardships... TOS sure hits hard if not one way it does in another...

Many Hugs to you
Dawn

[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.

[Peg24]

This is sure a fattening thread, but I will stop and say Hi and then go out for a walk!

Peggy

[johannakat]

Alison- thanks for your encouraging post. It is certainly true that the body works to heal itself, and the best we can do is put it in the right environment for it to do so. I have all my fingers crossed for me (and you and dawn and everyone else, too!!!)

stardust- yes, my mom left today. You have a good memory.

Such a strange feeling to be here in my home, where I am usually the supreme caretaker, and be so helpless, My mommy was here baking cinnamon buns and chocolate cakes for me in between carting my kids to school, doing all the laundry, the cooking, and the cleaning..and above all making sure we were stocked up on mint chocolate chip ice cream.

she was ready to go and i was ready for her to leave, but I really felt lonely today once everyone went off to work and school...as all the days were very full while she was here. It was the best visit we've had in a long time. I forced myself not to do too much...cooked a frozen dinner and slept on the couch a bit.

as usual, rambling with no real purpose.

got to go

johanna

[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

[Dmom3005]

Hi, I'm Donna and I'm just trying to learn about this disorder and more things.

I've got all kinds of issues with my health and I believe it was Shelley that lead me here to this forum. So Forgive me if I seem to be stupid at times, with some of my questions. Because I'm kind of lost.

But I am finding this a very informative group and I am learning a lot from you all.

Thanks

Donna