post decompression symptoms?

[Guest guest]

Question for all of you willing to read this. I was decompressed May

06, and have been having ongoing problems since then. Some of my

symptoms did go away or improve, but I still have symptoms that either

did not go away, or have appeared since then that the Drs. have not

found a cause for.

I am not a person that wants to chalk everything I have up to being a

chiari symptom. One reason for that is we thought the " dizzy

disorienting " spells I was having were chiari related even though hey

did not go away post decompression. We were wrong. They were

seizures-got worse-and led to a grand mal. I now have intractable

complex partial seizures and am very likely going to have temporal lobe

surgery to correct that. Some of my symptoms are compounded by

this--but some are unrelated. Also, I have on my journey met people who

have made chiari their crutch--they refuse to fight what is wrong with

them and it has become their excuse for everything--I won't be that person.

The following symptoms have not gone away, how likely is it that are

still attributed to the chiari and will simply be long term issues:

Neck/shoulder stiffness and aches even with no physical activity. Left

side weakness and pain, the pain is dull some days just bearable others,

it is never enough that I feel like I need anything more then Aleve to

make it dull again unless I have done too much physical activity and

then I just deal with it (I dont like taking more then over the counter

pain killers because I react strongly to anything else). The right side

is a dull ache about once per week though that tends to be if I go up

and down the stairs several times a day. I still cannot walk very much

in a day. I can go to the store and shop since it is stop and go and

slow pace, but I cant go for a walk because the continuous walking just

does me in-even physical therapy didn't help this. I have to choose my

activities. I can do A but not B and C and so on. Some of my fatigue

my also be related obviously to my daily seizures as I have anywhere

from 2-3 every day to 4-5 on a bad day.

Symptoms that have come since my decompression that are not related to

epilepsy, side effects of meds, and that I have had tests for, and the

Drs cant give me a cause for: Numbness in hands and feet that comes and

goes--it is like a " play dough " feeling in spots on my feet--my hands

will just feel weird and I will shake them-not that I think it helps I

think it makes me feel like Im doing something! When the Dr poked me

with a pin in my feet a actually didn't twitch until she was about 4

inches up my shin! I could feel it it just didnt hurt. I had a nerve

conduction test and it was fine and I do not have diabetes. I have also

developed a very occasional " floating left arm " It has happened only a

few times but it is strange. My arm will just go off and do its own

thing....one time it just raised by itself one time it pulled a paper I

was writing on to the right on its own and one time it raised my seat

belt up so I couldn't buckle it. I will also suddenly just drop

things--not because I slipped or ran into something or wasn't paying

attention--they will literally just fall out of my hand as if I let them

go even though i didnt! I have dropped whole plates of food, packages

of macaroni all over the floor, and my fork so many times its gotten

funny. The last symptom is visual--I get a " tracking " in my vision. I

will literally see the track of where things have been when they move.

This does not happen all of the time it happens in spells. The best way

I can describe it is this--you know when you take a pencil and hold the

very end of it and wave it really fas tin front of your face and you can

see it a bunch of time in front of you, you know which one is the pencil

but you can see the outline of where of the pencil has been--its like

that. It will ahppen with everything..so if something si moving I will

see several outlines behind it or if my head moves I will see the

outline behind everything as my head moves the image.

I've had so many tests its crazy. I am beginning to just want to say

" Its the chiari " but I cant just do that because I was decompressed and

I don't want that to become the excuse and miss some other thing that is

going on with me. I have had so many tests its crazy so I can't believe

they would miss something!!

If you are actually still reading this thank you. If you have something

to say thank you. Any ideas would be valuable. I know whatever all of

you come up with would be worth looking into.

kelly

decompressed may 06