LONG NIGHT

Sorry not to have posted earlier but it has been a long night.

Surgery was a success, in that Shira's spinal cord was badly tethered and when the Neurosurgeon released it, it spang right up.  The reason we had to come cross country for this surgery is because on the MRI's and the other testing that was done, there was no proof of a tethered cord.  For people with Ehlers Danlos, the cord can be tethered but not show up on an MRI, so most Drs aren't able to diagnose  it and/or willing to treat.  Finding a neurosurgeon who knows Ehlers Danlos and is willing to operate based on clinical findings rather then is radiologic findings is a very rare species.  Dr Tye, while willing to do the surgery told us he wasn't sure he would find a tethered cord, but has worked with enough Ehelrs patients that he has seen it.  Therefore, when he told us post surgery how tightly she was tethered and how the cord sprang up when he released it, we were all thrilled. He also is now more of a "believer" in this bizarre phenomenon in Ehlers patients.

Now we just need to wait and see what results she gets from the untethering. We remain cautiously optimistic.  The Dr said that he felt the strength in her feet was better post surgery then pre-surgery :) Also, she is feeling some sensation in her lower legs, which have been numb for almost 3 years:)

Last night was rough, her pain wasn't controlled by the morphine, so they switched her to Dilaudid and gave her a pump.  At one point I was sitting by her bed, holding her hand with one hand and her pump in my other, pressing it every 15 minutes so she could try to sleep.  Of course, Shira being Shira, even as doped up as she was, kept telling me that I needed to sleep.  Little sleep was had, but we have gotten through the first 24 hours post surgery.

Shira has spiked a fever, so hopefully it won't be anything.  Right now the plan is that she will be in the hospital for 5-7 days.  Shira is happy that the hospital has BRAVO and TLC and very nice nurses.

Again, thank you for all your support, love, well wishes and prayers.

Hugs