Kara & Travis
Kara is 24 years old and was diagnosed in 2001 (at age 10) with Chiari Malformation & Syringomyelia and has undergone 15 neuro/brain surgeries.
A Love So Pure
My Father holds me in his nailed scarred hands, which I put there, but for some reason He still loves me with all his heart.
Thursday, November 7, 2013 12:16 AM CST
First, I am sorry it has been a long while since I've updated. It has been such a busy time in my life! I still am struggling with my daily chronic head pain and some intense nerve pain due to the positioning of my shunt tubing. Last year, I found out that my 4th ventricle was blocked and there was talk of surgery again. Of course, I was horrified at this idea and began praying hard! I've had a few shunt issues and in January, my ventricles collapsed due to a malfunction with my shunt dial. I had woke up on my 2nd day of class for my last semester in college and could not lift my head due to the debilitating, unbearable head pain which is known as low-pressure. My shunt was set on 160, so it didn't make sense that I was experiencing low pressure symptoms. My mom immediately drove me to the emergency room. They discovered that my shunt had moved to 30 (the lowest setting your shunt can go). The real problem was that neurosurgery could not get my shunt to move off of the 30 setting. They would try adjusting and then I'd get an x-ray and they'd discover it wasn't moving and was stuck. This went on for hours! The pain was awful and it was physically and emotionally exhausting. I had a lot of fear that I was going to be forced into another operation. Finally, they were able to get my dial to move to 130. So, that is where I am at now. I would ideally love to get my shunt removed, although, I don't know if it is possible for my body to adjust without one because I have Pseudo-Tumor Cerebri (high intracranial pressure). In order to get the shunt out, your shunt has to be moved slowly to 200 and you have to be functioning well.
I have postponed my yearly MRI and will do it in a few months from now because I didn't want the MRI to mess with my shunt dial and have another situation such as in January.
So, for the good news....
I graduated from college in May with a degree in Deaf Interpretive Services. I am a sign language interpreter. The next great news is that I am engaged and getting married.... in TWO DAYS (11/09/13)!! I am marrying the most kind, loving, gentle, caring and godly man. He truly understands my pain and supports me in everyway. We became engaged on April 5th, 2013. I will post some photos of us together!!
Read Journal History
Patient Room: www.uchicagokidshospital.org
University Of Chicago Comer Children's Hospital
5721 South Maryland Ave.
Chicago, IL 60637
http://csfinfo.org Chiari & Syringomyelia Foundation
http://www.dinet.org Dysautonomia Information Network
http://ihrfoundation.org/intracranial/hypertension/info/C22 Intracranial Hypertension Resarch Foundation (Pseudotumor Cerebri)