We're back from TCI....

[Guest guest]

Hi everyone,

My daughter and I got back from NY at 12:30a this morning. I wanted so badly to

get on the computer at the Mc House and post how our appnt's were

going. But I was too tired every night to type any posts.

Our appnt's were the 8th and 9th. They were our F/U from 2007.

She had her MRI's (brain, cervical, and Lumbar) done at the Manhasset Diagnostic

center, and 3 hrs. later I had my urodaynamic test done. Yeah, I don't have a

urogentic bladder! But I still have to see a urologist here in

Ohio(bladder/bowel dropping, strss incontinence, urgency, frequent urination,

etc). Due to my EDS dx, my bladder has shrunk and is not able to hold much

urnine.

On Fri, we saw Dr. Shalat(neuro) and then Dr.B, after. It was a very possitive

experience. We met with Andre (nrs. prctnr.) and she was awsome......she

just joined 11 mo. ago and boy, she really ads to TCI and is SUCH an integral

part of our treatment.

Dr. B has changed ALOT! He is so alot more personal then he was in 07, when we

were there. My dauhter and I had the pleasure of meeting with him in his office

for over an hr. And what a visit it was.....

He was funny(as usual) but really took the time to answer ALL my questions.

It turns out, that my 9mm chiari is a very thick " monster " chiari(Dr.B's words)

that needs to be oporated on. My daughter's 5-7mm is causing the same affect on

her, and she needs to have decmprssn, too.

Dr.B said he has figured out a new technique for EDS pts. who suffer from

instability AND need to be decmprssd. It's called : Modified Subpial Retraction.

He said a C1 laminectomy(removal of part the C1 vertabrae) was NOT performed(due

to the high risk of postoperative craniocervical instability raised by her EDS

dx).

I have been so resistant to the cervical fusion, but more willing to have the

dcmprssn. He said he wants to do the dcmprssn. first and then later on if

symptoms persist, we can do the fusion. I was exstatic!!

He explained how we would be laid on the operating table face down, and then

forcepts screwed into our head, to stablize us. Then we would be shaved(the sz

of a lrg grape fruit) and an incision about 5-5 1/2 in. would be made. It would

take hr. & 1/2 for preperation and 6 hrs. for the srgry.

He said the scull would be drilled out, and he would then go through the dural

membrane, and then take a coderizing tool and make and incision at the bottom of

the cerebellar tonsils and then he would " cook " the brain. He and my dughter

laughed. I laughed too but, didn't think it was funny.....but I guess it is,

kinda.

He said the herniated part that gets coderized is none-functioning. Kind of like

fat on a chicken. I asked how he knows where the non-functioning stops and the

funcitoning starts, and he said it looks completly different.

I asked alot of questions, and he answered them all. My daughter is going to

have her srgry after mine, in Sept.

I hope this inlightens those of you who are wondering , as I was, what happens

during the dcmpresson. srgery.

I'm very excited and scared.........But it's time.