Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

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Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

Postby TracyK » Sun Nov 08, 2009 2:25 pm

My 15 year old Daughter was recently diagnosed with Chiari/Syringomyelia...After the shock and trying to even understand what Chiari with Syringomyelia was, we have been searching for answers. We have seen several Dr.'s who all say she needs surgery, however, everyone's opinion on when and how to do it differs...Is there anyone out there that has had a teenager have the surgery or anyone who can help me with some of the information or experiences you have had...??
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Re: Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

Postby wendi » Tue Nov 10, 2009 10:04 am

Sweetie:


Try posting this on the pediatric site and/or the cm/sm site so more people see it. This is for success stories and you need help from other parents.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

Postby chiarimom3 » Sun Nov 15, 2009 6:47 pm

My daughter was diagnosed in 2005 with Chiari Malformation. She had surgery in June of this year. We didn't realize how bad her symptoms had become. She hid that from us until we were sent to a new neurosurgeon after an annual MRI. He started talking surgery right off the bat. We were not expecting this. It turns out that her spinal cord was compromised and he said that if she were to fall down or be in a car wreck she could stop breathing. So the last day of school she had posteria fossa decompression surgery. The surgery that was to last about 45 minutes took 2 1/2 hours. He said it was the worst case that he had seen. She only had about an inch wide strip of hair shaved about 3 or 4 inches long. She had a lot of soreness and a stiff neck for a while but now she is great. By the way....she flipped her car one month and two days after the surgery. He last MRI shows that the surgery is a success. Her surgeon is Dr. Christopher Troup in Greenville, SC. He is a God send!!
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Re: Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

Postby youngwife » Mon Nov 16, 2009 8:18 pm

My daughter is 15, and also has Chiari and SM. If you would like to chat, I am on Facebook and I will be happy to call or email you. I understand how scary this all is.

Blessings to you!

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Help..I'm lost..My 15 year old was diagnosed with Chiari/Syr

Postby Chiariblogger » Sun Dec 06, 2009 7:54 am

Hi

You might find this post of help. A friens of mine has a teenage daughter who has gone thorugh ACM and SM. Her Syrinx covered nearly 3/4 of her spine, but following surgery, she has made a brilliant recovery, hardly affected her school work and is no enrolled on a college course where she is doign woncerfully.

http://chiariblog.co.uk/content/natalies-story

I hope it helps

TC
Chris
ACM (17mm herniation) SM C1 to C3. Decmpression Surgery April 2009. http://www.chiariblog.co.uk
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