Surgery scheduled - Diplomyelia

[Guest guest]

I met with my original Neurosurgeon yesterday. For those of you that

have followed my story you already know I wasn't crazy about him at

first. I have seen at least a dozen DR's since he diagnosed me, and

every single one of them remarked that he is highly renowned in this

field. I liked him much better this time. Probably because I am so

much more educated about my condition and understood every single

word he said. Lets face it, surgeons are not known for having the

best bedside manner.

While discussing in detail what would happen during surgery he

mentioned removing the fibrous tissue between my two spinal cords. I

asked if there wasn't bone between them and he said " No, you don't

have a diastematomyelia, you have a diplomyelia. Your cord duplicated

itself, not split. Theres a very good chance you also have two filium

terminale. " He said he would open the dura and repair the split first

and if the cord were still tethered he would go down and work on the

filium terminale(s).

Who knew!!

All of my MRI's have said something like " Diastematomyelia without

evidence of bone or osseous spur " . Duh. So the Neuroradiologists

had it kind of right, just used the wrong term for the type of split

cord malformation I have! I KNEW there was something wrong with those

reports. This is just more proof you absolutely HAVE to be your own

advocate.

Because of where my split is located He said I am very very lucky

that I still have control of my bowel and bladder, and that one of

the risks involved in surgery is that I could lose control, but that

it was a very very small chance. The more common complication is a

CSF leak but I will not be allowed to move for at least 24 hours

after surgery. He said sewing up the dural sac is like trying to

stitch up a water balloon.

I think at last count there were about six of us that had a split

cord malformation. Is there anyone here that had a diplomyelia

repair??

I'm thrilled about the prospect of getting my life back, getting off

the narcotics and not being in pain anymore. But scared about the

surgery itself. I'll probably have a zillion questions for everyone

that has been through it after the reality of having surgery sets in

a little more.

Phew... this is getting long. Thanks for listening! I'm SO grateful

for this board and everything and everyone I have met here

in Arizona.

(I had to distinguish myself since there have been so many s

here lately!)