Hi all..still here. I check in from time to time, but haven't been posting. Doing okay...still trying like everyone else to find the balance between staying active and flaring things. RSD sx seem to be ramping up a bit, which is scary.

Dawn, are you around? Alison? How are you guys doing?

Finally got through the insurance settlement and started with a remodeling project, which includes an air jet tub. I'm really enjoying it, but have to keep it on low or the bubblemassage is too strong.

My headset microphone doesn't seem to be working, so I'm not able to use my Dragon...may need to get a new headset one of these days.

Nice to "see" everybody! Mark, I'm glad you got your implant! Yeah!

Donna

i guess i should check in before august gets away from me! can't believe how fast this year is going by, you guys.

still on the fence about having a re-do. even though chelsea's been given a reprieve on the hep 'C' front... at least for now, and won't have to deal with this again in the foreseeable future (unless she meets that "perfect" guy and decides to make me a grandmother, that is!.

the decision to have the rib resection was a no-brainer, given my dx (true neurogenic TOS) and the fact that i have end-stage hand atrophy. plus the pain levels are majorly unbearable - but that's been the case for many years, so i think i just busted myself in another vital lie. somehow or another, i bear them don't i.

i just do not relish the idea of going back under the knife, knowing that it will not do anything to address those pain levels. guess i need more information as to whether it will improve the odds on saving my L hand. according to dr. weaver, there is no hope for either the intrinsic muscles OR the nerves ever coming back. the other top TOS docs i've seen have given me hope for at least the nerves to regenerate after the BP release.

so now the question is, are these complications making the hand worse? it will be 2 years in nov. since i had the rib resection. of course, i did have that unfortunate TV episode 5 weeks post-op and that didn't help anything... but since i couldn't get anyone in the ER to image my BP or even look at the goddamned surgical report from denver i suppose i'll never know, will i.

i have the collins study from a couple of months after that incident, but his abject hatred of my surgeon is such that i have a hard time trusting the contents of that novella. plus, the man doesn't seem to have the courage of his convictions... he talks vaguely about "residual rib" in the body of the dang report but states nothing definitively in his conclusions. i don't believe ribs grow back that fast, and i really don't believe steve annest is that careless!!! i just don't.

(collins also states in one sentence that my left shoulder is higher than my right, then a few lines down that my right shoulder is higher than my left... so perhaps i got him on a bad day. never did get a final version of the damned thing! - nor could i seem to get anyone other than the prescribing physician to even look at it, despite it's very hefty pricetag.)



but here's the thing. there is something else going on which i will probably continue to explore while i am gathering second opinions and making plans for an autumn trip to denver.

i have been seeing an energy healer. her name is maria, and she specializes in trauma. i put a post up about it this morning in the spriitual sanctuary forum, if anybody is interested. not sure what to say about it here, other than what is left of my mind is pretty much being blown by this person.

now i don't want anybody to get the wrong idea here! some of you know parts of my story. and maria herself did tell me that she doesn't think i should go on oprah and say that TOS is caused by trauma, or anything like that... but she is wondering whether in MY case (and given some of the losses i've shared with her in our sessions) some of my high, high pain levels aren't related to unprocessed grief. because let me just tell you, i've had some stuff happen in my life and no one there to really help me with it - especially as a child. zero coping skills. can't say i really developed them as an adult, either, until maybe relatively recently. survival skills, yes. coping? nah!

so i have to put my stupid medical file back together again because i lost that. then i left my brand-new notebook that i just bought - which had some great stuff in it and a lot of people's numbers, etc. (including maria's!) i think in shelley's hospital room when she had her thyroid yanked out last month and we went to visit her.

i lose everything that means something to me. what is up with that? my life has been about loss and pain, pain and loss. good grief! i'm a soul survivor.

is it september yet? i figure if the leaves can change, then so can i.

alison
"Be Brave"

Hey all! Very thankful kids are back in school as fewer demands on "Mom's Taxi Service", LOL. I love living out away from town for the peace, the wildlife, the natural beauty, the wonder of seeing the Milky Way in the night sky - but with TOS and RSD the driving has become really difficult. My oldest has her permit and is 16, but has a long way to go to complete her hours behind the wheel, which requires Dad's assistance, as younger daughter isn't allowed along for practice driving and I prefer not to leave her alone very often - you never know WHAT she'll get up to!!

Overall, SCS continues to keep pain at manageable levels, MUCH better than prior. However left arm pain continues to increase, hand atrophy visibly progresses, and I am dropping objects with my left hand as often as I do with my right (surgical side). I wish I knew the right course of action. With RSD, it's best to avoid surgery if at all possible. And Dr A. advised me 3 years ago not to have the left side done unless the pain got unbearable. The
TOS surgery was successful but made my RSD (which I had due to my injury) spiral out of control; the pec minor surgery 7 months later caused the pain to get even worse.

The SCS keeps the arm/hand and underarm pain to about a 4 as long as I don't overdo. If I were to have surgery, the SCS would have to be removed, as it's in the epidural space of the spinal canal, and any risk of infection is to be avoided - so it comes out if you're to have major surgery. The thing is, a scalene minimus was found wrapped around the brachial plexus and under the vein when Dr Annest did the TOS surgery on my right - and he said in his opinion I would never have gotten better without the surgery because of that, no amount of therapy would have helped. There is a very good chance I have a scalene minimus on the left as well, I think it is very possible I do and that it is the main problem there as well because the locations of pain and the pattern of atrophy in the hand are exactly the same as I saw with the right.

The difference is this side has developed slowly, while the right came on very fast as a result of trauma. I have seen some recovery of some of the muscles in my right hand, while other muscles have had NO recovery at all. The longer the left side compression remains, the fewer nerves will be able to regenerate when/if the compression is released, and so fewer muscles can return. How long/far is the point of no return - where a thumb has been so damaged it can't be returned to a functional state?

I saw Dr T last Feb for a full work-up on the left arm - it tested actually WORSE than my right on several measures. What the HECK am I supposed to do with THIS???

Feet and legs have been much better lately (knock on wood). I think the RSD sometimes just flares the sacral nerve and then walking is agony. Feet burn if I am on them too much, but that has happened for so long I am mostly used to it.

I had yet ANOTHER phone conference for my vaccine injury case yesterday. Still have not seen a counter-offer, the DOJ atty has wasted this whole summer just dragging his feet. Supposedly we are to have one in the next 2-3 wks and at long last can start negotiations. Thankfully it seems the judge has lost all patience with this toad as well. The atty is leaving Vaccine Court for a year's assignment elsewhere within the Justice Dept starting Sept 10, but says since we are so close he will try to finish our case himself. I HOPE so - if not, we will be on atty #3 since this began July of '04. It is now almost 14 months since we were notified that the decision was in my favor. I wd be beside myself with joy if we could get this done before 2008 - but not holding my breath!!

Am to get blood levels checked as I'm "looking anemic" - no surprise there, but mighty tired of getting poked. And on the hunt for a pain psych/counselor who understands NEUROPATHIC pain as opposed to only muscular or a general counselor who deals with multiple issues. I find it too easy to wear a mask and say whatever they want to hear if the person has no understanding of the complete nightmare of chronic neuropathic pain - waste of our time and doesn't help me a bit.

That's it for me - good luck to all going in for surgery! And Anne dear, my very best to you on the L-U-V situation!!

beth

Hey Ozzy here, Im doing o.k. Had the flu for a week. Everytime I cough feels like my head is going to explode, time to think about getting discs in neck fixed i suppose ahhh I hate surgery. Still waiting to hear if im being medically retired from my office job. Hope all is well with everyone. Cheers, Ozzy

Beth: You really gave me a idea. Whoever I see as a health care professional for whatever should have been through some sort of painful experience similar to mine. I know from my day to day experiences its very hard telling people just how much pain I'm in. Scratch hard, impossble. It's not a tangible thing to most people. Chronic pain? It sounds bad. Finding people that can relate and understand is certainly hard. everyone ive seen so far just sees a healthy looking man in front of them and probably hasnt experienced anything like this.

Okay everybody,

I just wanted you all to know I am still here too mostly reading arms are so weak most of the time I don't bother to type.
But did want to tell you all I will have a NEW 1st granddaughter in JAN I am so excited!
I hope to have some strength in my arms by then or someway to hold her.
You all are in my prayers,
G-MOm