New member introduction

[Guest guest]

Just wanted to introduce myself to the group.

I had joined another AMC online group back in early 2004 when I was

diagnosed with ACM. Reading about other peoples's experiences helped

get me ready to face my own decompression surgery.

I was not one of the lucky ones. I did not have one surgery and I was

done. After the decompression I had a sneezing fit and broke my

patch. I think it would have broke eventually even without the

sneezing. I had developed hydrocephalous after my decompression and

the pressure on the patch was just too great. I ended up having a VP

shunt placed and several revisions to repair the patch, it broke 5

times. I also had to have my shunt revised once because the tube in

my side pulled out of place. In all, I had 7 surgeries in 6 months in

2004.

After the 6th surgery I developed a staph infection in my head and

spent most of October of 2004 in ICU quarantine with a spinal tap

trying very hard not to die.

Now to give you a good idea of my state of mind at the time I also

had to deal with, among other things, gaining up to 307 pounds, my

grandfather dying, putting my 18-year-old cat to sleep, my father had

a pace maker put in, and my fiance never visited me in the hospital

that last month in ICU...instead he had an affair saying, " I had to

distance myself from you emotionally just in case I lost you. "

Yea...I didn't buy that crock either! LOL

At the time, I was not emotionally ready to help anyone else deal

with this condition because I was so totally lost myself. Since then

I have gotten my " poo " together. I dealt with my losses, lost about

110 pounds, kicked the loser to the curb and never looked back. Now I

am dating a very nice man who is completely supportive and

understanding of my condition. He even looked it up online to learn

about it before he ever asked me out. The man doesn't even have a

problem touching my shunt tube when I can't even stand to do....God

love him!

The point is I've gotten into a good place now. I think I can be of

help to those who will come after me and I wanted to join this group

so I might help others the way people helped me when I was first

dealing with all of this.

My name is Shari and I was born and raised and still live in Wichita

KS. I recently turned 40. I was decompressed in April of 2004, had a

VP Shunt placement and Chiari revision to fix broken patch in 6/04,

had to have shunt tube moved back into place in 7/04, two more Chiari

revisions to fix broken patches in 8/04 and 9/04, I developed a Staph

infection after the September surgery and had a final Chiari revision

in 10/04. By then I was so weak and sick of being in pain I told my

doctor that he had to get it fixed this time or kill me because I

couldn't take anymore. That time he got it fixed...I guess I should

have said that to him sooner! lol

Recently I've had an onset of a whole set of new neurological

problems and I am being tested to find out if I also have MS. After

two years of me trying to work more and my doctors telling me to give

it up, it's not going to get better...I have given in and filed for

disability. Though I refuse to quit working all together! I still

work 20 hours a week at a local bookstore.

One thing about dealing with all of this is it makes me glad to wake

up in the morning. And if I don't have a headache...it's a day

straight from God! I wouldn't change anything I had to go through. My

life means so much more to me now. I refer to that year in hell as my

B*tch slap from God. I used to be so neurotic. I worried about every

little thing until I made myself sick and everyone around me

miserable. Now if I wake up, I have hair, and nothing is

leaking...It's Damn Good Day!!

Anyway, I just wanted to introduce myself and say I hope I can help

someone the way others helped me when I needed it.

Good luck to all and God Bless!

Shari

Wichita KS