The Chiari Institute!

I heard back from The Chiari Institute (TCI) earlier last week!!!!!! It was not the news we expected, but not at all in a bad way! They do want to see me for a consultation, but what we did not anticipate was that they offered me a surgery date before they have even seen me! This is not something that TCI normally does, so they must have seen something significant on my MRIs that I sent in!

I have a consultation with the nurse for a neurological exam on December 16th at 9:30 and then a consult with the neurosurgeon at 10:30 that same morning. At this consultation I will be able to discuss all of my concerns relating to my health. These are some of the leading experts on Chiari in the world so they will be able to understand all of my complicated medical issues and hopefully have suggestions to help some of them. I then go for pre-surgical testing and paperwork the next morning at 10 a.m. and surgery is scheduled for December 19th at 7:30 in the morning.

The surgery they are doing is called a craniocervical fusion. I do not know all of the details, but the neurosurgeons are going to put in titanium rods and screws to fuse my skull onto my first two or three vertebrae. This will be done because the joint between my skull and top vertebrae is unstable. My skull wobbles on top of my spine. This is a diagnosis that I have been expecting for a while, so it does not come as a surprise at all. I will then have to wear a hard neck brace for at least a couple of months until my bones fuse around the hardware they put in. I will loose some amount of range of motion in my neck, but at this point we are not sure how much since I do not have full range of motion as it is.

The hope is that this surgery will greatly help to reduce my symptoms. This surgery should reduce headaches, neck pain, ringing in the ears, swallowing difficulties, difficult holding up my head, and hopefully general fatigue.

The surgery will be another big one. It will be a six hour surgery, which is about the same as the brain surgery (decompression with duraplasty) I had last year. I will then be in the hospital for an estimated 5-7 days, although I am hoping it will be shorter! This surgery is slightly less risky because they are not opening the covering of my brain, but is still considered a major surgery!

I am overwhelmed by everything coming up with my health so prayers for peace and acceptance for my family and I would be greatly appreciated! I am not sure what this means for school for next semester because last year I had great difficulty going back to school full time after my surgery.