Understanding My surgery

Understanding My surgery

First off, I had an amazing surgeon. I would recommend him to anyone. He took very good care of me, and took the time to answer all my questions. He also didn’t pressure me into having the surgery.

This is what I had done: Posterior Fossa Decompressiontonsillar resection, cranialcervical fusion, duraplasty, and laminectomy.

Posterior fossa decompression – This is a surgical procedure performed to remove the bone at the back of the skull and spine. The dura overlying the tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to stop or control the progression of symptoms caused by tonsillar herniation, to relieve compression of the brain stem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF).  What this means for me is, they took out a part of my skull. They didn’t put it back, it won’t grow back, it will always be gone, and I will always have to be careful.

Tonsillar Resection – A big part of this disease is that the tonsils of the brain have herniated or descended into the spinal column. The resection means that the neurosurgeon burns off or resect the part of the brain ( the tonsils) that have herniated down into the spinal column. What this means for me is not clear yet. It is supposed to help clear up some of the symptoms, but it can cause brain fog, memory loss, balance issues, ect.

Craniocervical Fusion– Occipitocervial fusion refers to a procedure in which the occipital ( back of the skull) bone is fused to the upper cervical vertebrae. This procedure typically involves the use of rigid hardware, typically titanium (instrumented fusion)  Patients usually undergo rigid cervical immobilization following this procedure (cervical brace, halo vest, or custom minerva) until the occiput and cervical bones completely fuse together. What this means for me. I won’t be able to drive. I can’t shake my head yes or no. to look at something, I have to turn my whole upper body. I can’t bend over at all with out exploding pain in my head. I have a hard time eating, walking, talking and swallowing.

Duraplasty – A reconstructive operation on the open dura mater that involves a primary closure or secondary closure with another soft tissue material (muscle, fascia, allograft dura).

Laminectomy – Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal. Also known as decompression surgery, laminectomy enlarges your spinal canal to relieve pressure on the spinal cord or nerves. This pressure is most commonly caused by bony over growths within the spinal canal, which can occur in people who have arthritis in their spines. Laminectomy is generally used only when more-conservative treatments — such as medication, physical therapy or injections — have failed to relieve symptoms.

I hope this helps everyone understand how extensive our surgery is. It’s not something to be taken lightly!

Updates, EDS Awareness Month, and an Anniversary

Updates, EDS Awareness Month, and an Anniversary

Hello all.

This has been one heck of a week! May is Ehlers-Danlos Awareness month. You can read more about EDS here. Show your support for the Zebra Community by showing off your stripes! Post your picture on the event page and tag me in it to win an EDS Awareness shirt! The most creative stripes wins!

So an update on me. I am slowly losing my ability to walk. I got a knee brace, but it ended up not helping, so back to the wheelchair. My EDS is progressing faster than expected, which sucks. I started some new medications that I thought were going to help, but so far they are not. I am trying to keep my head up, but its hard to do.

Today marks the one year anniversary of when our lives were changed forever. My dear, sweet Crista Nicole Fultz was cruelly snatched away from us. While the man who took her life will spend the rest of his behind bars, it brings no comfort. It doesn’t bring her back to us. It doesn’t give her children back their mother or her family their beloved sister and daughter.

Crista “did nothing to deserve this,” Hughes said. “She was shot and killed needlessly. Mr. Fensler had a history of domestic-violence offenses and should never have had a firearm.”

Please think before you act. Domestic violence is not a joke or something to be pushed aside or taken lightly. Domestic violence stole Crista’s life. If you, or someone you know is a victim of domestic violence, there is a way out. No one deserves to be abused. That’s not love.

Orange was Crista’s favorite color. Show your support by wearing orange for Crista, and purple for domestic violence awareness.

Its been a rough day readers. So please, go hug the one’s you love.

We love and miss you every single day little sis.

Christy