Leaving on a Jet Plane

We are on our way to Maryland for Shira to have surgery that will hopefully give her back her strength and feeling in her legs, take away her back pain , improve her scoliosis and hopefully improve the sensation in her lower legs and feet.

The surgery Shira will have on Tuesday morning Sept 18  is to release her tethered (“tied down”) spinal cord. In my layperson’s understanding, your spinal cord is attached to the bottom of your spinal column by a piece of connective tissue called the filum terminale. This tissue acts like a rubber band, keeping the spinal cord in proper tension as the body grows in childhood. In patients with Ehlers Danlos this piece of tissue often malfunctions, creating too much tension on the cord. This can cause many neurological symptoms, including back pain, leg pain and weakness, numbness, tingling, etc. So, our wonderful neurosurgeon, Dr. Henderson will open Shira’s spinal column through the sacral spine (the lowest part of her back), make about a 3” incision, cut out some bone to expose the cord, open the dura (the tissue that surrounds the spinal fluid and spinal cord), and snip the filum terminale thereby relieving the tension on her spinal cord.  Shira will have the surgery at  Shady Grove Hospital.  She was originally suppose to have the surgery at a different hospital but on Thursday evening, Dr Henderson called to tell us that the other hospital said Shira was too young to have a surgery on her spine at their hospital.  Luckily for us, Dr Henderson, who is beyond amazing, made arrangements for her to be operated on at  Shady Grove Hospital which recently did away with their Pediatric ICU , so Dr Henderson has stopped doing surgeries there.  He doesn't feel that Shira will need to be in the ICU and convinced the powers to be to allow him to operate on her.  He called us this afternoon, Saturday, to tell us to get on the plane and he will make it all work out.

I will try to keep this blog updated as we are truly blessed with so many caring friends and family who are holding such good thoughts and praying for Shira's health to improve.  If love could heal, Shira would be so very healthy.  Shira is also doing a blog and her blog address is