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!