My Daughter Mayah is 6 Years old. Last year this time she was a completely normal girl...even above average! She was independant and would do everything on her own. She started by having headaches almost everyday. Then I noticed one day in the bath, that she could not sit straight, she would bend over to her right side. Then she was unable to lift her right leg to put on her pants. Then she went from being right handed to being left handed and began to use her left side to compensae for her right sided weakness and hemiplegia. I went to one Neurologist who basically told me she was fine and I was an anxious parent. I then saw another neurologist who did an eeg on her and tried to get an mri of the brain, but failed to bc her insurance didnt think it was medically necessary. Then finally her pediatrician diagnosed her with Hemiplegia and he got an mri of her brain authorized. The MRI showed findings of Chiari Malformation 1. So from there i was referred to a Pediatric Neurosurgeon. He recently as of this Thursday confirmed her diagnosis of Chiari Malformation 1. From the time that I started noticing her symptoms to now, I can clearly see that she is progressively getting worse. She has occupational therapy twice a week, her therapist also agrees that she is getting worse. The pediatric neurosurgeon recommends a decompression surgery. I'm not sure if i should go through with it. But it seems like this is my only choice besides sit back and monitir her. But i feel if I sit back and monitor her she will continue to get worse and more than likely the paralysis she has will be perminant, and if so I don't want to wait for it to get any worse by holding off on the surgery. Please give me your input. Has anyone had a child who has under gone this surgery? If so how was the surgery and afterward??
I know there are several parents on this board and I'm sure they'll share their experiences. There is a lot of evidence that the younger you are treated the better your outcome. Plus children naturally heal faster. My thoughts and prayers are with you and your daughter!
So sorry your daughter has been diagnosed with CM1. It must be so very scary and sad for you to watch your daughter suffer. When we were told our daughter had CM and a syrinx that was symptomatic, we did our research and found out that surgery is really the only way to address her symptoms and keep her from getting worse. We researched pediatric neurosurgeons who specialized in chiari surgeries and scheduled her operation. So in less than a month after her diagnosis, she had the surgery and now, nearly 6 months later, is so much better. She is back to school and participating in sports and back to being a kid again. Yes, there can be complications from the surgery and my daughter did have some of them, but we were fully informed and the place we went to finally figured it out. She's doing well now. It was a very stressful time for our entire family, but we have faith in our NS and the NL, and the hospital where she was treated is amazing. If you have more questions (and I'm sure you do!) don't hesitate to ask :)
What type of complications did she suffer from after the surgery?? How was the surgery? How long did she stay in the hospital? How long was she out of school?
She had the surgery April 23 and was discharged April 25. She was sent home with Motrin 600. Recovery was not fun and she had head and neck pain to be expected. Unfortunately she developed aseptic meningitis (treated with steroids)and a large collection of fluid under her incision. Most kids do not develop these complications. The fluid is treated with medications and her follow up MRI is in December. She needed the surgery because of the syrinx and it appears it was successful in reducing the size of the syrinx but of course we will know more after the MRI. She was cleared to go back to school in 3 weeks. The best news is that the neck and shoulder pain is gone and she hasn’t needed naproxen for the past 4 months! She would only have gotten worse the longer we waited and we were told her syrinx was quite extensive. We felt she absolutely needed this surgery and we don’t regret it at all. She is back to playing high school tennis, full time school, etc. I understand how stressful and frightening this is for you. Believe me, you are strong enough to get through this!