MS and Chiari I
So many things are making sense to me now... so many things.
It's rare that I can manage to write all that much anymore, and reading too is slowly but surely becoming more and more... all but impossible. Reading and writing... two things which are at the center of my being.
When I got the MS diagnosis, a lot made sense, and I was simply amazed. As I researched though, and came in (cyber)contact with others diagnosed with MS? Something was still not right. Either I'm the biggest PUSSY to ever have MS, and the most horrible person who ever existed, or MS isn't the main problem.
"MS symptom" after "MS symptom" seemed to be "unique" to me... even Neurodude called me "atypical"... and one symptom after the next I could trace back to having started when I was very, very young ...a baby, in fact.
Now, here I am with this info. I have a Chiari malformation. So, I research it... and day after day I feel like crying (tears of relief), even as I struggle to read ...the "stories" of others with the same thing. Even more so than when I got the MS diagnosis, the Chiari I malformation... IT'S THE LAST PUZZLE PIECE.
Joy. It has made me feel JOY! I finally make sense to myself. It all makes sense. ALL OF IT.
Yes... and then quite a bit of fear. I am getting worse and worse. The only thing which seems to help people with these "malformations" is surgery. Surgery. Fucking BRAIN SURGERY.
Would it be worth the risk? Depending on the day, I'll say "yes" or "no". Worth it or not though, I have no one here. I have no one to help me aside from "RavensWings" ...and this whole surgery thing isn't something a few hours, one day a week, from RavensWings will cover me for.
So, I don't know whether or not to push. I don't know if I should go into my next Neuro appointment and insist that she get moving on hooking me up with another Neuro who knows something more about these malformations. I don't know.
First, they wanted to write it all off as my being "mentally ill". Then, it was all about my having "MPD". Then, it was all about my having "MS". Now, here it is... the beginning of it all. The root of it all. The STEM of it all.
Yes... "The Way Home" indeed.
...and here's the front door. On the other side is Heaven or Hell. It could be either. I DON'T KNOW whether or not to open it.
It really hurts sitting out here on the ground though, and I know that I'm no "pussy" when it comes to pain. So, I best decide soon.
posted by: dstar (reply)
post date: 02.25.08 (10:48 am)
I am very happy that you got to feel some joy! I agree with wolfen, though. The big question is how much the surgery would fix. I wish you all the luck in the world on this one.
posted by: Barnabus1 (reply)
post date: 02.25.08 (2:05 pm)
Really good to see you posting again Cutter!! I'm glad a piece of the puzzel finally fell into place, and if it will help or give you a better life, then Id go for the surgery, possibly even if it would just make you feel better!!
I am rapidly losing the ability to walk, and it's scary as hell!! I try and 'exercise' and fight it, but I'm losing fast!! My Doc prescribed codein for me, but I only take it on weekends, so I can go out with my friends!
posted by: fallensnow (reply)
post date: 02.25.08 (10:46 pm)
I wonder how many patients have lost their lives due to wrong diagnosis and prescription.
I'm really glad that after all these years, you've managed to find out what's really wrong, and I'm crossing my fingers for you that if you decide to go for the surgery, everything would turn out well and good. I really really hope that you'd be well. You more than deserve it.
posted by: Cutter (reply)
post date: 02.26.08 (2:54 am)
Reply to: wolfen
I have no idea really, and I fear too that whatever good the surgery might do, the MS monster will mess up for me anyway. Maybe the surgery will give me my balance back just in time for the MS to take my ability to walk at all away. :(
posted by: Cutter (reply)
post date: 02.26.08 (3:11 am)
Reply to: fallensnow
I think that some of the problem, in my case, is that there's more than just one thing wrong. It's not just MPD, or just MS, or just the Chiari malformation... it's all of them, and so I don't "present" as a typical case with any one of them. This makes me a great "teaching case", but being such is not exactly too much fun for me.
I do appreciate your well wishes. :) I can only hope that in time things will get a little easier for me. We all deserve good in our lives. ;)
posted by: fractalmom (reply)
post date: 02.26.08 (6:35 am)
well. i do in fact know one person who has had chiari malformation, AND the surgery.
He was in intensive care for two day. then regular care for about 4 days. then discharged home. he walked and talked immediately. was a bit under the weather, so to speak, low energy levels.
the surgery, although brain surgery, isn't acutally that traumatic on the body, it isn't as bad as say, a gall bladder surgery, or hernia repair, or, um...appendectomy.
how weird is that? there will be about an 8 inch scar on the back of your neck, going up into your head. starts at the top of your shoulders (bottom of neck) and proceeds upwards. looks rather weird if you shave your head.
if it were me, and it's NOT....and it is looking like chiari is responsible for alot of your misery, i think I would go for it cutter.
but, it's your body, and YOUR quality of life. you are the only one who can decide.
can you qualify for home heath care?
posted by: FinalyFree (reply)
post date: 02.26.08 (8:26 am)
Whether you have the surgery or not it has to be a HUGE relief to atleast have some answers and that puzzle piece!
:)
posted by: ggirl (reply)
post date: 02.26.08 (12:34 pm)
Tough decision. Home health care sounds like a good suggestion, but I know how hesitant you are to have lots of human interaction. Knowledge is power, though, and now you have a lot more of both. Take care.
posted by: thejongleur (reply)
post date: 02.26.08 (1:21 pm)
Cutter,
I noticed that tblog isn't currently keeping track of visitors, so I wanted to leave you a note letting you know I've been here, and been reading.
I know that this post means there are many more questions that need answering.. but even the briefest moment of relief and peace of mind seems to me to be very significant.. and absolutely the very least you deserve.
ams
posted by: Cutter (reply)
post date: 02.26.08 (2:57 pm)
Reply to: thejongleur
Thank you, my friend.
Your caring means more to me than you know.
posted by: doeeyed (reply)
post date: 02.28.08 (7:12 am)
I wish you the wisdom you need to make this decision. I don't envy your situation.
I hope and pray something can be done to help alleviate the pain.
I'm pulling for you.
posted by: lorischuster (reply)
post date: 03.01.08 (7:25 pm)
I am so happy that you have found the piece of the puzzle that has been eluding you. The frustration must have been unbearable. I imagine that whatever gives you the best possibility for the best possible quality of life is your answer and is probably worth the risk. But, whatever you decide...the joy that I read in your words today is evident and makes my heart glad for you. I don't know your pain, but I know it hasn't been easy. You are right...it is time for good things to happen to you. I am sorry that I am so far away and not able to help. As always though, I'm thinking about you and wishing you the very best.
posted by: nightbreed (reply)
post date: 03.03.08 (2:28 pm)
i just looked that up and my heart goes out to you..
posted by: mattblack (reply)
post date: 03.04.08 (3:12 am)
I think it helps if we can know the *why* of suffering, instead of being bewildered by it. That's true for me, anyway.
When that *why* opens a path to some relief and resolution...even better.
I hope very much that if you do decide to have the surgery, the results are good and the recuperation smooth. You so deserve for something to go *right* for once!
