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Originally Posted by cmh799702
Hi! My name is Celina and my 2 1/2 year old daughter was just diagnosed with Chiari Malformation and Syringomyelia. Over the last six weeks she has had 3 MRI's. Her neurologist said that her Chiari was "simple" and that she will need MRI's every year unless a new symptom appears. She will be starting physicial therapy to help with her pain. I have so many questions and it seems like nobody is really willing to help answer them...
Almost 2 years ago she started waking up at night with severe leg pains with muscle cramps, muscle spasms, her legs felt like they were on fire, and she would be up for 90 minutes and then sleep for an hour and wake up again (sometimes every hour). I brought this to the attention to her primary doctor and she ordered blood work and x-rays. My daughter is healthy for the most part; has a hernia and a peanut/tree nut allergy. She started walking at 9 months and has always been advanced. She is average height but her weight has always been on the low side (at her 2 year check up she was -3% on the growth chart). She has always been clumsy and would literally trip over her feet. Each time she fell she would either hit her head, bust open her upper lip, and broke her 2 front teeth (which had to be surgicially pulled).
She is our third child; we have a 14 year old daughter, 9 year old son, and our newest edition is almost 8 months. From what I understand this is a congential disorder; but can't be seen on ultrasound.
Some the questions we have are regarding her future and what she can and can't do. I have read that this disorder is not curable and that the surgery is only a form of easing the pain. We also are wondering if the malformation will grow? Will it stay "simple"? What exactly does "simple" mean? Should we consider keep her safe and not allow her to do certain activities? Should we prepare to homeschool her so that nothing will happen to her head while at school? I can probably keep going... If anyone can help us. As far as I know there are no support groups in my area (the closest one is in Denver, Colorado).
We would be grateful if someone out there can help us...
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I was diagnosed with Chiari I Malformation at age 48. I started having "strange" symptons probably about 5 years prior to that. Although the Chiari (tonsils of the brain herniated through base of skull) did not appear to be severe my symptons only worsened. If she is already having problems with sleep and balance her Chiari may not be as simple as your doctor thinks. The first neurologist I went to actually told me that my problems were not neurological and referred me back to my primary physician. I had gotten to the point that if I sneezed, gagged, or coughed I would fall down and not be able to raise my head and I slept ALL the time. My primary physician LISTENED to me and he diagnosed the Chiari. He immediately sent me to another neurologist and I had shunt placed in my brain that allows my spinal fluid to move from my brain. That fluid build up was causing pressure on my brain and the correct diagnosis and shunt probably saved my life. I did however end up having the Chiari Surgery (Feb 2011) where the opening at the base of my skull was enlarged therefore preventing the pressure of the herniated tonsils of my brain causing unmanageable pain. The point of me telling you all the above is to advise you to find a doctor that will listen to YOU. I have also read that physical therapy can actually be dangerous to someone with Chiari, but I have not had a neurologist agree with me on that. I refused physical therapy. I still have some pain but I am prescribed pain medicine. My memory has been affected but am doing pretty good right now. Hope my experience helps you find the information you need to get your daughter the attention she needs. (I am in Georgia)