Re: Update on our daughter/Deb

[Guest guest]

In a message dated 6/24/2005 1:51:47 PM Eastern Standard Time,

debbied31@... writes:

Well , I know I havent written much the last week or so,

Joe is doing GREAT back to work (45hours this week) and feels good except

for the neuropathy which we are hoping goes away soon !!

We took our 13yrold daughter Dani to the neurosurgeon on Wensday and he said

that the syrinx ( fluid like cyst in spinal canal) goes from C2 ALL the way

down to the bottom of spinal canal!!

He is 99% sure that the syrinx is caused by Chiari 1 malformation , so she

is going to get Chiari Decompression surgery on July 12th , she will be in the

hospital for 3-14 days depending on how she does.

There is a 90% chance that this will fix the syrinx , if it doesnt than she

will have to go back again and have surgery on her spine

She is naturally terrified to death , as would anyone ,

The doc of course had to mention worse cases scenarios , death , paralysis,

meningitis, brain damage.

But did he HAVE to do that in front of her??

I suppose he did but GEEZ

Not having surgery is not an option , as the syrinx can cause permanent

nerve damage, loss of bowel / bladder control/ and eventually paralysis.

The doc isnt sure if her nerve damage she has already ( numbness in

face/neck/shoulder/upperback) is reversible or permanent at this point.

So we will keep our fingers crossed AND I am going to ask him about B-6

Seems if B6 helps with the chemo neuropathy it may help with hers???

Thanks for listening

Deb

Ohhhhh, Deb.... I'm just now reading this post....so sorry Dani has to go

through this....you and Joe, too!!! My gosh, does it EVER END!!!??? They say

trials and tribulations builds character, but damn how much character do we

need???

No, I disagree... I think the dr. could have been more tactful and told you

and Joe, but not with Dani sitting right there. Did she really need to hear

that??? Sometimes drs. are just so insensitive. Grrr....

Soooo glad Joe is back to work and doing well....a real battle but worth

it...a real success story!!! Tell Joe he is now among the " good " statistics!!!

Still praying for him, tho....I don't trust Cancer at all!!!! Tell Dani we

are praying for her as well.... and you, too, Deb....the Mommy, the worrier,

the caregiver!!!

You will keep in touch, right?? Even if just a quickie to let us know how

Dani is doing?? I know you'll be stressed and tired when you get home from

hospital, but we'll be thinking about you!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn