Kara

Kara is 17 years old and was diagnosed in 2001 (at age 10) with Chiari Malformation & Syringomyelia and later with PTC (High Intracranial Pressure), Dysautonomia (POTS). She had a VP shunt for 3-1/2 years and had an LP shunt for 6 months until it was removed July 2006. In Feb. 2007 Kara was diagnosed with brain stem tethering, which means her spinal cord has become anchored to her brain stem. This is a very painful, rare and uncommon condition that can cause neurological problems. Surgery is risky to have done, but may be considered due to neurological progression and POTS. Kara has undergone 12 brain surgeries and many shunt and spinal taps since her diagnosis. She continues to deal with severe chronic head and spinal cord pain on a daily basis. We continue to pray that Kara's health problems will improve.



~Kyle is 20 years old and was diagnosed in 2005 with Chiari Malformation. He is currently attending college, majoring in Neuroscience & Chemistry.



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.
(Underoath)



Please visit our dear friend Jessica's page. We met her and her dear family in 2002, when Kara and Jessica had Chiari surgery a day apart.

www.caringbridge.org/nj/jessica

Journal

Monday, June 30, 2008 9:35 PM CDT

Thanks for all of the continued thoughts and prayers. Lately, I really need them. It feels as if I cannot get any relief from the pain anymore and it has just been unbearable. One of the worst feelings is being so helpless. To know that there is NOTHING that will help the pain, nothing that will make it go away or even get relief. It almost feels as if I am trapped inside my own body. There is no escape from the ongoing suffering. Even though I am going through this rough time in my life, I somehow am still able to function. I continue to do my artwork, play guitar and work.

This past week I have been getting this awful headache, where it feels like someone is squeezing my brain and stabbing it. My headache was so terrible the entire day yesterday that i started crying and had to get a massage to try and bring the pain level down at least a little bit.(Thank you Traci for taking the time to come over and give me the massage)

I received an email from Dr. Frim recently, stating that it is time to discuss the brain stem tethering surgery. This news really hit me hard and I was very upset because Frim has been trying to hold off on the surgery because it is so risky and rare, so to hear him say we should discuss it, really scares me. I am very nervous and could use a lot of prayer for direction. We have an appointment set up for the beginning of August to discuss the surgery, but we may do a phone conference instead.

--Kara

Hospital Information:

Patient Room: www.uchicagokidshospital.org

University Of Chicago Comer Children's Hospital
5721 South Maryland Ave.
Chicago, IL 60637
1-888-UCH-0200

Links:

E-mail Author: ketch16@yahoo.com

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