My sis was just diagnosed with CM too. Luckily hers is not ad bad as mine (I have a 14 she has a 3) I am worried about my kids & other family members. I was hoping I was going to be the only one with this.
Becki,
I worry about that with my kids. They both have muscle pain and headaches frequently but their pediatrician has always been very reluctant to order an MRI. I've always found comfort in the fact that they don't have the symptoms I had as a child that were dismissed as being clumsy or uncoordinated. However after reading that so many have other family members who have Chiari I am going to talk to him again especially about my daughter who's now a teenager. ....Wendy
i know how you feel my son was diagnose with it and im going for testing in a few days to see if i have it... it will change things if i do because i would hate to know if i gave this to my son and i want more kids but really dont know if i would want to risk them having to go through the same things as my son Micah...
I was just diagnosed in November. I have had symptoms since I had a head injury when I was about 14 months old that progressively got worse over the years. Then even worse when I had a car accident. Then worse when I was pregnant. Then finally the worse of all in November when I passed out from getting dizzy and hit my head. My whole life I have been in and out of doctors offices and specialists for my symptoms. Had tests after tests ran. Was told I had bad ears, bad sinuses, bad allergies, bad ankles, was clumsy, etc, etc, etc. Now the puzzle pieces fit.
Now the puzzle pieces are starting to line up for my brother also. He has several of the symptoms. He has an MRI on file at the local hospital, but refuses to go get it so we can check it b/c he doesn't want to know.
But worse than that.... My 2 year old son can't brush his teeth without gagging. Chokes on food, drinks and his own spit all the time. Is "clumsy" like me. And walks and runs on his tip toes ALL the time. Does he have any other symptoms of Chiari? I don't know. He's 2. I can't ask him. He can't tell me. Should I get him checked? Considering he has 3 of the main symptoms that I have I say YES. I'm not saying I will send him in for surgery right now. But I do think that he needs to be monitored. Especially b/c of what it can do to his heart and he has a heart condition. So he doesn't need something extra added to it. And the tip toe walking is a big sign of tethered cord.
For me and my son, I think getting him tested is the right decision.
Jessi Linn,
Have you looked into Sensory Processing Disorder for your son? My son has it and although he's outgrow some of the symptoms like walking on his toes and gagging. (He still has issues with certain textures while eating) He had the same symptoms as your son does. They walk into things especially people. I brought my son to alot os specialists from the time he was 2 months old because he was an extremely fussy baby and he was diagnosed around 8 months. I still worry about the genetic link with both my kids too,espeacially my girl.I am always on the look out for symptoms of Chiari with them and would love to get them tested to find out one way or another just for piece of mind. Thank God neither of them have the issues I had as a kid and that gives me comfort or I would push their pediatrician harder to test them. You can find a list of symptoms for SPD or Sensory Intergration Disorder many places on the web. It may or may not pertain to you son but as soon as I read your post my son came to mind. Two is such a great age mine are teenagers and it went by in a blink of an eye. Enjoy your little one and good luck................Wendy
Jessi Linn said:
I was just diagnosed in November. I have had symptoms since I had a head injury when I was about 14 months old that progressively got worse over the years. Then even worse when I had a car accident. Then worse when I was pregnant. Then finally the worse of all in November when I passed out from getting dizzy and hit my head. My whole life I have been in and out of doctors offices and specialists for my symptoms. Had tests after tests ran. Was told I had bad ears, bad sinuses, bad allergies, bad ankles, was clumsy, etc, etc, etc. Now the puzzle pieces fit.
Now the puzzle pieces are starting to line up for my brother also. He has several of the symptoms. He has an MRI on file at the local hospital, but refuses to go get it so we can check it b/c he doesn't want to know.
But worse than that.... My 2 year old son can't brush his teeth without gagging. Chokes on food, drinks and his own spit all the time. Is "clumsy" like me. And walks and runs on his tip toes ALL the time. Does he have any other symptoms of Chiari? I don't know. He's 2. I can't ask him. He can't tell me. Should I get him checked? Considering he has 3 of the main symptoms that I have I say YES. I'm not saying I will send him in for surgery right now. But I do think that he needs to be monitored. Especially b/c of what it can do to his heart and he has a heart condition. So he doesn't need something extra added to it. And the tip toe walking is a big sign of tethered cord.
For me and my son, I think getting him tested is the right decision.
My daughter had decompression and also has 2 shunts, I had decompression my grand daughter goes to her neuro tommorow and my brother is terrible with it and my daughter twin bro has had migraines for years and finally just got his MRI
Both my Mother and Sister have Chiari and had decompression surgery and now I am having all of the same symptoms and am seeing a Neurologist who is working toward getting a diagnosis so I would say there seems to be a genetic link at least in our family with the women...but for my sister and me our symptoms didn't start until after brain injuries when we were college aged and my mom didn't start to have any problems until later in life
My daughter started when she had her son, her twin brother also is having problems they are 28. Her daughter had a ct went to neuro yesterday and they are now setting up for her MRI she 6. I know my brother has it he is 53 and I had my decompression in oct and I am almost 50