My daughter is a sucess story.

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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My daughter is a sucess story.

Postby megansmom » Mon May 21, 2007 12:12 pm

My daughter is 17 years old and was diagnosed with Arnold chiari at age 4. Of course as you can imagine our lives were also turned upside down. The thought that our beautiful duaghter could have anything wrong with her came as a complete surprise. I had taken her for a 4 year old immunization visit to the clinic where I was working at the time. (I am A registered nurse in Texas). The nurse was quick to point out that Megan had scoliosis and referred us immediatly to A scoiosis physician in Amarillo Texas. The comment which sticks in my mind is " Megan may have Tumor on her spinal cord or she may have a condition called Arnold Chiari malformation. I was mortified and all I hear was Tumor. He referred us to Dr Richard George IN Lubbock Texas who was a Neurosurgeon specializing in ACM. At that time the best scenerio was ACM I could not fathom the idea of a Tumor. The Mri confirmed ACM and she underwent decompression Surgery in Lubbock. She was in Pedi Icu for 3 days. And recovered remarkably well. In fact upon arriving at home there was no eividence except a scar on her neck to show that anything was different. To this day she functions as any perfectly normal 17 year old. She avoids any thing that might lead to any jarring in the neck like trampolines or track events which cause that sort ot jarring. She plays varsity basketball and volleyball without any problems. When was cheerleading she made sure to never be at the top of a pyramid. Residual effects: She has occasional headaches and some numbness and tingling in her hands and feet. She is always on the AB honor roll at her school and excels in most classes Well except for pre cal which she thinks is eating her up. I say all this to say that she is very NORMAL is not exceptional in every way.

Postby drummergrl » Mon May 21, 2007 3:45 pm

That's so reassuring to hear!!! I'm 17 and I had the decompression when I was 16. Even though I feel pretty much back to normal, some people still act like I'm fragile or something. Because I'm not 6 months post op yet, I still have sports restrictions, so it's good to hear that those do come off eventually! Oh, and I'm totally with her on precal!!!!! lol Ewww!!!!!!!! Anyways, your post just totally made my day!
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

Postby momofjulia » Wed May 23, 2007 10:54 am

It's so nice to hear good news. My 4 year old is having a bad day with her issues, so I thought I would come to the board for thoughts/inspiration and I found it in your message. I hope that your daughter's success continues.

Sucess story

Postby pattip448 » Wed May 23, 2007 10:24 pm

Thanks so much for posting such a positive update. As a mom of a 15 yr old Chiarian who has not had treatment yet ,it is gives us hope to continue on.
Patti , (EDS), Mom of 16 yr old with TC and EDS 6.6mm cerebellar herniation, 15 yr old with EDS Hypermobile
Posts: 89
Joined: Thu May 17, 2007 9:45 am
Location: Calgary,Canada

Postby emarismom » Thu May 24, 2007 5:01 pm


Your story is so inspiring. My daughter was diagnosed and decompressed at 5 with CM/SM/Scoliosis. she has little to no symptoms of the CM/SM except the scoliosis. She is now 8 with a so called "stable" curve at around 23 degrees. Did your daughters scoliosis resolve after decompression? Did she ever have to be braced? How long did you continue to follow up on the scoliosis?

Sorry for all the questions.
Posts: 30
Joined: Thu May 24, 2007 4:55 pm

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