Little Miss Kendall had her school physical in the summer of '09 before going into 3rd grade. At her visit it was found that she had early onset of puberty so she was referred to an endocrinologist for further testing. In September she saw the endo and he scheduled an MRI to check her pituitary gland. I received a call on 10/9 with the results.....pituitary gland - NORMAL! YAY!!! Then came the bomb.....they found something else. A tumor. On the bottom of her cerebellum.
My heart sank. My throat closed. Every piece of me crumbled. The words no mother ever wants to hear. My baby. My little angel is sick.
Tears. Tears. And more Tears. Pull it together Kori.
10/16/09 - First visit to the neurosurgeon. NOT CANCER. Kendall has what is called Chiari Malformation. It's basically a herniation in her brain. Her brain is too big for her little skull so it's forcing itself to protrude outside of one of the cavities where the spinal cord connects tot he brain. Since the MRI she had was not intended for the Chiari, she was scheduled for a second one to check the flow of spinal cord fluid to and from her brain and to also measure the size of the malformation.
10/23/09 - Second MRI. What a trooper she is. She doesn't want to go inside the noisy machine again but sucks it up and does her thing. So grown up for an 8 year old. She argues a bit with the technician about what radio station to put on and finally gives up and tells him to "just shut the thing off then"! LOL! That's MY girl!!!
10/27/09 - Results. *****stomach falls to floor....again.***** The Chiari measures in at 1.3CM or 13MM. Based on my own research I know that the average size Chiari is about 7MM in children. Leave it to my child to do it BIG! Also the flow is severely restricted. Almost none at all. No wonder my munchkin butt has such bad migraines.
Next step...see neuro on 11/2. His statement: "Discuss our options. Surgery may be eminent" **gag**
Hi sweet girl! A friend sent me a link to your story...bless your heart (and your mama's)! My name is Tammy and I live near Waco. My daughter, Natalee, is also 8 years old, and she has had to go through a lot of the same tests you have. Her last MRI was over 2 hours long! Those MRIs are not fun are they?
ReplyDeleteNatalee is having a lot of the same symptoms you are having. She also has precocious puberty, but her's is because she has a small pituitary gland. She also has severe chronic pain all over her body every day and other symptoms. Her MRI ruled out chiari malformation, but they still do not know exactly what is wrong. They are leaning toward fibromyalgia because they think her symptoms may be caused from spinal cord and/or brain damage stemming from meningitis she had when she was just a baby.
Natalee cannot go to school right now, and sometimes she feels lonely or like she is the only little girl that has to go to so many doctor appointment. She even has to use a wheelchair because walking hurts too much.
When she is finished with her math, I am going to let her read your story send you a message. Natalee also has a blog, and you can leave her a message too. Maybe kinda like being pen pals on the computer! Her address is www.caringbridge.org/visit/nataleefay.
We love you sweet girl and we will be saying BIG prayers for you and your family.
HI Tammy!!! Thank you so much for your kind words! Waco huh?? Im thinking maybe your "friend" may be a family member of ours :) as I lived there for some time a while back. Kendall's reason for her first MRI was precocious puberty but her pituitary was normal....that's how we found the CM. We are crossing our fingers everyday that we have decent news on 11/2 when we see the neuro again. Kendall's biggest complaint to date has been her migraines that are simply unbearable to witness...poor little thing.
ReplyDeleteI will be sure and let Kendall know about Natalee. She sounds so brave and sweet. My prayers are with you all. Keep in touch.
Love Kori and Kendall
I just found your blog through a google alert I get when people blog about Chiari. I was diagnosed in 9/2006 ~ I am almost one year post decompression ~ I am a mom of two beautiful daughters who also have chiari ~ one of them is the same age as Kendall. What great strength you have for blogging ~ keep sharing your story as you will touch others lives and do your part to educate the world about chiari. Please feel free to reach out to me if you have any questions or just want to talk ~ I am a good listener ~ hang in there ~ your daughter seems like a pillar of strength ~ hugs ~ Lace
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