Kyle says he has been having headaches/pain in the back of his head. He says the best way to describe it is like an ice-cream 'brain freeze'. They happen several times a day. Definitely something to ask his doctor about when we see him in a couple weeks.

Chiari Awareness

Chiari affects about 1 in 1,000 people. Most common symptoms are severe headaches, balance problems, pain and weakness in the arms and legs, trouble speaking and swallowing.

Shannon's Story - Chiari the Killer

I was searching for some meta tags and came across a person's blog about a woman who died from complications related to Chiari. Please read when you have time. 

Excerpt from 'Shannon's Story'
Chiari is a highly undiagnosed condition and is widely unknown and misunderstood.  The longer you delay a Chiari diagnosis, the greater chance of additional neurological damage.  Shannon’s Chiari diagnosis was about 5 years after the onset of symptoms, which initially included severe headaches and anxiety, later followed by depression. After she began to lose the use of her hand and leg, Shannon was finally diagnosed and underwent Chiari decompression surgery. Unfortunately, it did not succeed for her although it apparently does relieve symptoms in about 80% of attempted procedures. During the remainder of her life, Shannon lived in excruciating pain with extreme insomnia plus about 6 other Chiari symptoms. Unfortunately, Shannon was unable to survive with the condition and left us earlier this year (2011). Chiari is not a rare disease, just rarely diagnosed on a timely basis!!!  Chiari affects 1 in 1000 people, and 3 of 4 of those are women.

Photo-1 Week Post-Surgery

This picture was taken 1 Week Post-Surgery

Photo-3 days Post-Surgery

This picture was taken three days after Kyle's second surgery

He Got a Sip of Water

The very next morning after Kyle's second surgery, he got a sip of water. His first sip of water in 10 days. He was happy!!! The swelling in his face and tongue had subdued a bit and he was able to talk. He was in a lot of pain but controlled it with his PCA.

Kyle's Second Surgery

Kyle had to have a second surgery 8 days after the first one. The first surgery was the decompression surgery, then traction for a week to straighten the spine a bit, then the fusion surgery. At first I wasn't nervous about this surgery but Kyle definitely was. For the days leading up to surgery day he kept mentioning how he didn't want to do it. I felt so bad for him.

The morning of the surgery he was scheduled to be in the O.R. at 8am. So a nurse came to get him around 7:30am. The nurse had to move Kyle's entire hospital bed (because he was still hooked up to the traction) to the operating floor. My husband and I went with him. When we got to the operating floor Kyle was moved to a small room to meet the anesthetist. Kyle was crying softly the whole time. The anesthetist was trying to joke around with Kyle but he wasn't in the mood. The anesthetist promised Kyle he would be asleep before anything happened but it didn't work out that way.

Kyle was given medicine to relax him and make he fall asleep but Kyle was too upset to fall asleep. When it was time to take him to the operating room he was yelling at me that he wasn't asleep yet, he didn't want to go. But we had to leave him.

As I walked to the elevator, I had tears in my eyes and I waved slowly to Kyle as he was being moved towards the operating room. I hated that moment.

Then I saw the neurosurgeon team across the hallway from me as if they were going to meet us in the small room. They glanced at me and noticed that Kyle was gone. They immediately came over to my husband and I and asked if we had any questions. Then Dr. Zovickian quickly explained the surgery procedure to us again. I was only half listening because I was sad and worried for Kyle.

The surgery ended up taking longer than the first surgery (prep time was shorter this time). This procedure consist of an implant screwed into the base of his skull and the closest intact vertebrae. Then they took bone from Kyle's hip and added it to the implant to stimulate the growth of new bone. Then he was put into his halo vest and stabilized. Apparently he lost 1/2 pint of blood which was to be expected according to the doctors. (My husband and I donated a pint of blood each a couple weeks before the surgery for Kyle). We got to see Kyle around 7:30pm. The procedure went well but when I saw Kyle for the first time after this surgery, I was stunned.

His face, eyes, and tongue was SO swollen. He looked terrible. His tongue had two large white sores on it and I'm guessing it was from the bite block. He tried to talk to me but I couldn't understand him. I stood in front of him frozen in shock. I was mad, sad and scared all at the same time. He wanted water so bad but there was no way he could drink anything because of the swelling.

I noticed he was laying awkwardly in his bed so I was going to help push him but without thinking I touched the side of his hip and he screamed extremely loud in pain. His entire hip was purple.

Needless to say, the nurses tried to make Kyle comfortable for the night and gave him plenty of pain meds so he could rest.

Fusion with Chari Surgery

One day post surgery....AMAZING CHANGE

One of the most amazing moments was the very next day after Kyle's decompression surgery.

Here's what I wrote I Facebook on Nov. 9th around 9pm: "OMG. Kyle has not been able to use his right arm or hand for over a year because of his issue but just now I asked him to squeeze my hand and he did. I'm happily amazed. So exciting!!"

I still think of it as amazing.

To think that so many of his issues he was experiencing for so long was primarily because his spinal fluid was not flowing correctly. Kyle's voice was another noticeable change. For over a year Kyle basically lost his voice. When he spoke it was barely louder than a whisper. I hate to admit it, but his voice annoyed me the most because I couldn't hear him and I didn't know why. I would yell at him to speak up and poor thing...he tried. But we didn't know at the time why he was losing his voice. So the moment I saw him after his decompression surgery and he spoke to me I was shocked...'cause I heard him! I didn't think his voice would come back but it did!!

Interesting Sites about Chiari

I thought these sites are interesting to share.

Fusion with Chiari Surgery

What is Arnold Chiari Malformation?
 Excerpt from 'What is Arnold Chiari Malformation'
ACM will worsen over time, and since the contest for space between my brain and spinal cord was already causing misery, decompression surgery was necessary. Did I mention that if left untreated, ACM can cause paralysis or death?

Halo Screws

There are four titanium screws to hold the halo in place which are screwed into my skull bone.

No time for blogging

I should have blog'd everyday while Kyle was in the hospital. But as a parent of a child staying in ICU, there wasn't time. Seems odd, right. But so much happened around the clock requiring our full attention.

More to come....
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