some great Chiari info

Found an informative and easy-to-read sheet about Chiari Malformation here.

http://www.conquerchiari.org/awareness/Chiari%20Patient%20Education%20Sheet.pdf

Breif details about Whitaker: his "tonsil" of the cerebellum is descended 23 mm below the base of the skull. It is attached to the top of his spinal cord and there is VERY little to no cerebrospinal fluid (CSF) between the cerebellum and the rest of the brain. He has been symptomatic with severe headaches in the back of his head during coughing, sneezing, exercise, and when he wakes in the morning. He also sometimes vomits in the mornings and has difficulty swallowing when he is congested.

Surgery outline: 4-5 hours, and from what I understand, the doctor will do the following:

• make an incision down the back of the neck at the base of the skull (about 4 or 5 inches)
• cut through the neck muscles and remove a section of bone from the back of the skull
• separate the top of the spinal cord from the tonsil
• shoot electrodes through the elongated tonsil to shrink it
• shrink the tonsil to the point where it is closer to if not all the way up to the base of the skull

this is where I get a little confused:

• he will carefully sew in an expandable patch that will be at the top of the spinal cord and the base of the brain and cranium.
• sew up the muscles and the fluid pouch at the top of the spinal cord
• seal the opening

Whitaker will have a neurophysiologist (I think ??) monitoring his spinal cord and nerve activity the entire time. He will have an anaesthesiologist with him the entire time as well to watch the levels of anaesthesia.  Yesterday he had blood taken so they could determine the levels and thickness of his blood in order to fully prepare for blood loss during surgery. We can give blood to be given to him, but it is only good for three days, so it would have to be Monday or Tuesday.  My blood pressure is too low to be able to donate, but I have O- blood, so we may look for an alternative method. We are hoping he won't need any, but John might give some on Monday if he can. I am pretty sure John and Whitaker are both A+ but I can't remember for sure.

He will be in intensive care for the first 24 hours. Other than bleeding, and infection, there is a risk of developing a leak of CSF after the patch has been placed, which might require a drain. We really, really hope this does not happen. We know that all the prayers will work for him to have no complications and a smooth recovery.

He should be moved to a regular room after he gets out of the ICU.  He will be there for a couple more days until he can eat and everything seems to be working well. Then we will come home and hopefully celebrate Father's Day together by being lazy and lounging.

The surgery will take place at Kosair Children's Hospital Our pediatric neurosurgeon is named Dr. Charles Stevenson. He is young and brilliant and we have every confidence in him. He went to SMU, then Vanderbilt, and is headed to Cincinnati Children's Hospital in a couple of months to become part of their team. We trust that God has put us in good hands.

Kosair Children’s Hospital

231 E. Chestnut St.
Louisville, KY 40202
(502) 629-6000
KosairChildrens.com

If you need to contact any of us, for anything, our cell phone numbers are as follows:

812-449-8981 (amy)
812-719-0402 (john)
502-819-5387 (Bon Bon - amy's mother)
502-777-4944 (Granddaddy- amy's father)
812-630-8282 (Grandma and Grandpa Lyons aka Gene and Agnes)

I will try to update people on the website or on facebook. Thanks everyone for your kind thoughts and prayers. We are so thankful that this is a fixable problem and that he is going to make a full and complete recovery.

Here are some pictures of Whitaker's MRI scans. His chiari and his spinal cord are basically fused, so it is hard to see anything except a big blob at the base of his skull and the top of his spine.

Another view looks like this, but I probably couldn't explain it if I had to.....

If anyone has any questions, feel free to ask me. We have nothing to hide, but we also don't always know the answers. We know that this is a routine surgery for pediatric neurosurgeons and we know that his Chiari is a large one, but we still are so thankful for so much: the diagnosis, the total lack of neurological damage, the resilience of children. If you have any knowledge to share, please feel free to write us or call us, as we are certainly open to suggestions. If you are a nurse and we come home with a drain, we might be calling you!