Roxanne update

[Guest guest]

Rox and I just got back from our visit, MRI and a good old chat with the

doc's.

No great news for us with the exception that her gigantic syrinx has not

grown,

small mercy with the other stuff.

Her posterior fossa looks as tight as ever, no flow and when I yell for help

we will go in for the fifth time. They initially were getting ready for

tackling

it sooner than later but I feel that she is not that ill although we do have

significant stuff going on.

So at least I know that next year may have its challenges and I can put

getting her

to pre school, our lives and my work into perspective. Knowing is half the

battle

and maybe things will remain relatively calm..fingers crossed and toes.......

Next time will probably entail a bigger patch on her patched dura and

hunting down

that regrown skull again, although we are unsure until 3d CT how much of an

issue

this is. All unknowns really until we scan bone and then open her up and

see what is

possible.

I'm fine, after so long and living the hard end of Chiari nothing much

surprises me

just grateful that the scan can look so bad and she is not so bad in our

context,

and most grateful for our doc's who provide us with expertise, compassion

and still

options.

So here's to Rox, Chiari fighter 4yrs, 4 decompressions, hydro, syrinx,

tethered cord

and probably next year 5yrs and 5 decompressions.

Kym

ps. I will send articles when I more settled.