Having Tethered Cord surgery 5/15

[Guest guest]

Hi, All:

I just joined this group (thank you moderator for allowing me in!). I'm just

shy of 50 and was recently diagnosed with:

Ehlers-Danlos Syndrome (Classic + Vascular mixed)

Cranio-cervical instability

Chiari Malformation I (major symptoms with minor herniation)

Tight Filum terminale (occult TCS)

Plus: a Pseudomeningecele (DOES ANYBODY HAVE ANY INFO ON THIS?)

I first went to see Dr. Clair Francomano who is at the Harvey Genetics Institute

at the Greater Baltimore Medical Center (fabulous doctor, really " gets

it " ---she's a specialist in heritable connective tissue disorders) and she

suspected TCS and Chiari...so she sent me to the Chiari Institute in Long

Island, NY.

I was up there for eval on 3/11, and will be having surgery to release the

tethered cord and also they will do Invasive Cervical Traction while I'm there

to decide the degree of Functional Cranial Settling there has been.

The surgery will be on Friday, May 15th at 7:30AM. I would like to ask for your

prayers that morning that the 2 neurosurgeons, Drs Bolognese and Milhorat, do a

perfect job and that all goes well.

Also, would love to hear from anyone who has been through either or both of

these procedures,or the Posterior Decompression and Cervical Fusion of C1-4 that

may happen later this year.

THANKS TO ALL AND GOD BLESS!!!

Cate from Miami