Hi, Celina,
I have had Chiari symptoms since birth. Unfortunately, the majority of doctors today are working on Chiari information that is more than 20 years old. Very few have kept up with the research because they don't have time with all the brain conditions they are dealing with and Chiari is a very complicated condition. There are some informative studies *edit* concerning Chiari being congenital and more than one family member having it, along with information about children with Chiari. *edit*
Duke University is doing genetic research on Chiari being passed from one generation to another as well as multiple family members (siblings and parents) having Chiari. **
*edit*
I hope this info helps you. Physical therapy depends on the therapist you have. I have had some good and and not-so-good therapists. It also depends on what kind of therapy they are doing.
I can attest that chiropractic care is out of the picture the majority of the time. This kind of care actually made me worse because the doctor did the old fashioned cracking and popping of my neck and spine--which could have paralyzed me. Instead, it just made me much worse! Most chiropractic care is bad for Chiarians from what I have seen on other forums and on the Chiari groups on Facebook.
If you can let me know what area you are in, I can see if there is a support group near you.
Hope this is helpful!
*********************************************
Quote:
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...
|