Twist of fate

[feelbad]

well, hi twist. Saw you had posted on another thread and just had to ask you how things are going with you.Its been way too long since you have been around.I do think of you from time to time and wonder just how things are going for you these days.please give me an update when you have time, okay? Marcia

[Twist Of Fate!]

Hi Marcia, things are going quite well actually, I took my trip to seattle in April, I have a few pictures in front of laynes condo and kurts bench in front of his house and stuff if you want to see them. Plus the space needle was out of control, I dont know if you've ever been but they have separate rooms in the museum where you can just jam for hours, all professional equipment with FX, it was great. One thing I didnt like was that the restaurant spins!!!!... :uke:: Went to the Red Light district in Vancouver and got lost! someone tried to sell me some dope the second damn day and SOUR!, pencil lead so fate kept me clean and it cost me 100 bucks Other than that w/d symptoms after 6 long months are actually getting bearable, im off methadone for now and in a bit of pain but ive been working out a lot and sitting in the steamer and keeping busy, They have me on Xanax XR and Valium, along with the Remeron, my doctor said to take a break from the Klonopin taper and live for a while, so that's what im doing. Im still devote to working with the younger generation in the future other than on the IT, I mean, im a pharm school drop out and I blow a lot of doctors away as well as the old CADC's The kid's listen to me, im only 25 with 10 years experience and a medical family background as my own so they're kinda pushing me into doing groups. Why not use all this wasted knowledge in this head, right? Other than that, spending time with my daughter, drinking green tea, writing my music, (using the old stuff, lost the creativity with the drugs and booze =( ) moved into a new home, working the IT still (for now) and putting on some weight. I just cant seem to be happy without anyone in my life though. but we'll just see what's to come of that I guess.....

How about you? You've been alright? Sorry I havent been up to date with these boards, tell me how you're doing....

CADE

[feelbad]

Thanks for the update cade,really did miss having you around.i am so happy that you have decided to 'live your life" for awhile.Sounds like you are doing pretty well considering everything that you had to deal with before.are you still actively using something.I only ask because of what you mentioned about getting burned while in that good old red light district.I you don't want to answer, i understand.

Things are still pretty much the same with me,some things are a little better and some things a little worse.I am currently fighting my way to get disability.God what a joke this has been.i based my case on the severe nerve damage,pain syndromes and neuro deficits that resulted from that hit nerve during the spinal cord surgery and come to find out, they denied me.i was absolutely floored.as with all of the documentation that i have (or thought i had)i figured that it was pretty much a done deal.Well according to them i could go back to work anytime now.my dr loved that one.my left hand is severely neuro and nerve damaged(this is also totally documented by an emg done by my physiatrist,along with his dictation that went with it where he more or less states that it is a severe handicap),has significant muscle wasting,and is currently clawing,yet they said that i could use both of my hands just fine!Now what part of all that didn't they get you know?

What really angered me the most about this whole nighmare is when i requested a copy of my medical file including the op notes(the dictation that a surgeon does after every surgery that explains everthing that was done or used,even down to what kind of thread was used to close me up)and also all clinic notes and just pretty much anything that was generated since I started seeing this NS.well the stuff finally arrived and much to my surprise and horror, there was very little info,just progress notes to my primary doc that never explained much, not even the brown sequard syndrome or the central pain syndrome that he diagnosed me with.And as if that wasn't bad enough(hold on to your hat here)there was not one single word mentioned in the op notes about the fact that they hit the nerve, lost on the monitor(this is also the reason for them having to stop the surgery)and had to leave at least ten % of the cavernoma behind still inside the spinal cord!Can you believe that????I was fully informed before surgery that if they attempted to remove the cavernoma i would definitely suffer some pretty significant neuro damage as the cavernoma was situated near the wall of the spinal cord,which is good, but unfortunetly, in that little space between the ca and the cord wall, there ran the nerves that controlled the fine motor function in my hands and the nerves to my legs,so i knew full well what I was looking at before they even touched me with a scalpel.I had to have it done though as it had already bled into the cord at least once already,causing me pain and some slight neuro deficits.but the neurosurgeon told me that if i did nothing and left it in, the chances of having another really devistating(as in paralyzation from the breast level down)bleed were extremely high.So I could just leave it and hope that it never happened or have it removed iunder more controlled circumstances.I just agonized over the decision for about a month and decided to take the risk as i just would not be able to handle the thought 24/7 that at anytime this thing could just let go and i would hit the ground and never get up again.but i was totally informed of everything before I consented.i knew that there would be damage, my NS just couldn't tell me where or how bad.

so it definitely was not a liability issue to not include that.I have no clue as to just why,something that significant was left out of the op notes.but i am just totally p****d.the NS s office (his secretary) really hasn't been much help so i am wingin it all on my own right now.It did occur to me that the neurophysiatrist whos job it was during the surgery was just to monitor my motor and sensory on a monitor would also have had to make his own op notes so i have spoken with his office and trying to track those down but my god, this is almost becomming a little bit too overwhelming here ya know?i shouldn't have to do this stuff.i am going to get a letter from my NS to disability about just why all of this improtant stuff was not in my medical files anywhere.he owes me at least THAT much don't you think?i wasn't going to use a lawyer for my reconsideration process as they end up taking 25% of your back pay,but right now, i don't feel that I have much choice.

as if things in my life weren't difficult enough, I have to deal with this little nightmare.I did speak with a guy in the U of M,where i had the surgery ,in the med records dept and told him the story and he said he would go through the main medical file and copy everything for me and send it to me.I told him that i need EVERYTHING! i want clinic notes op notes and the other drs op notes and if there is anything else in that file that has my name on it and words, i want it.so who knows.what a flippin mess.My depression,which was starting to get just a little better has really gotten bad again,and my stress levels are through the roof right now,which in turn, increases my pain level and the spasticity level in both of my legs.I also was just Dxed with a bakers cyst behind my r knee that is absolutely excruciating.i went and had another MRI on it and am going to see an ortho surgeon as soon as my primary gets the results.so here we go for yet another surgery.This will make four in just the last three years.YIKES!!

sorry about the ramble there Cade, this is just constantly on my mind and driving me slowly insane(i was alredy headed that way, it is just moving it all along a little more quickly,lol)I;ll bet you are sorry you asked just how i was doin huh?But i am glad that you cared enough to ask.Thanks,i just had a really great catharsis.well, don't be a stranger okay? it is really great that you are back.really did miss our 'conversations"Take care, Marcia

[John 3:16]

Marcia,

I am so sorry you are going through so much!

When you say "they" who are you referring to (about your hands being fine, etc.)? Insurance? Just curious~

And, yeah, Cade, a good woman can make life grand, huh? Nice to hear how your doing!

michelle

[feelbad]

Not insurance, disability.I don't think they even bothered to read most of my file as the left hand damage is just so severe and very well documented that it would be impossible for anyone,even someone that is not a dr to read all of that and think that it is totally useable.Every reason that they gave as to why they denied me is totally contradicted in my files.even the explanations from my drs regarding all of the symptoms and nerve damage and these horrid pain levels are documented by my other drs notes,even without all of the neurosurgeons info, they still could plainly see that it would be virtually immpossible for me to actually hold down a job.My sympathetic nervous system took the biggest hit in all of this and just about every bad thing going on in my body right now,all comes from that damage,You can actually trace a little trail when you follow the way the SNS runs throughout the body in comparrison to an impairment of some sort.

I am just so sick and tired of getting nailed with something everytime i turn around you know?my dr increased my lexapro as when i went to see him,I was just soo bummed and pathetic looking.He actually said that I reminded him of a little lost puppy.lol.We really do have a great dr patient relationship,and he is the only person who has stood by me throughout this whole almost three year nightmare of surgeries and all of the devistation that has occured in my life.I just want my life back you know?is that asking too much?it will never be what it once was,but right after surgery before all of these horrid symptoms started up, i was thinkin,hey i can deal with this,this is doable.but then wham, round one began and it has been one hell of a ride ever since.I am going to stop now as i don't want to depress anyone else,sorry.i should find out the results of the MRI done on my knee within the next couple days, i will keep ya posted,could be another surgery lurking just down the road again!!Thanks for caring michelle,I can always count on you to make me feel a little better about things.Marcia