Just found out My daughter has Chiari 1 Malformation

Rhonda - posted on 09/28/2009 ( 2 moms have responded )

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Three years ago we found out my daughter Katelynn (15) had scoliosis, her curves were 37% at the top and 7% at the bottom. She is 3% away from surgery but could not be put in a brace because it started up to high in the head and neck. She complained of back pain and head ackes all the time which is what lead us to find the scoliosis and the doctors keep telling us scoliosis is not painful. She devloped an eye infection that turned out to be iritis, which is a form of arthritis in the eye. This lead us to more testing and she tested HLA B27 positive(ankylosing spondylitis) athritis in the back and hips. They order to have a MRI done on her back to see if there was any fusiing of the bones going on. When I went in to get the resaults the good news was she had no fusion yet .But on top of the rest she has Chiari 1 Malfotmation the cerebellar tonsil is extending 13 mm in the spine, and a syrinx extending from C7 to T6. Their sending her to a Surgan. Her doctor couldn't tell me anything about the problem so all the info I gathered was from the net it's a little scary and I'm glad I found this site. Does 13 mm mean she needs surgery? And is the rest of her problems a resault of the C1M?

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Melyssa - posted on 09/28/2009

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My son who is 11 has Chiari's as well. The found it during an MRI to diagnos him with BCCNS. At that same time, we went to his nurosurgeon because he was having headaches, his feet were constantly falling asleep, he was having bouts of incotinence as well as several other concerns.

She did another MRI to see if he has a tethered cord, there is a small filament that comes off the end of the spinal cord and sometimes it can get wrapped around the cord and pulled taunt. Our doc told us that Chiari's and tethered cord often go hand in hand and that it is a simple surgery to fix the tethered cord which might relieve some of the tension causing the Chiari's.

I would ask your doc about this. i looked into surgery for my son's Chiari's but my doc told me the only way to fix it would be to remove part of the brain, the lower lobes, that has gone down into the spinal opening. This is not an option to me as my son's symptoms are not too severe.

From what I've read, the severity of the symptoms range from person to person as well as the severity of the malformation.

I hope I have helped, let me know if you want to talk, you can email me melyssa_chasteen@cocast.net. Good Luck, and keep me posted.



Melyssa Chasteen (son Kyle 11, son Jace 3)

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