New diagnosis

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

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New diagnosis

Postby mommy0104 » Sun Oct 17, 2010 9:29 pm

Hello there. My six year old son has chiari 1 malformation (7 mm) and a syrinx (2 mm, from c4 to c6).. As of right now, he is asymptomatic, other than walking on his tip-toes which he has done since he started walking. The MRI done on 9/10/10 showed no tethered cord. He doesn't complain of anything at the moment, if he is having symptoms I don't know about them, but any ideas on what I should look for? His Neurosurgeon (Dr. Tremble in Orlando) is just suggesting Physical and Occupational Therapy and monitoring the condition.

Thanks for all the help... :)

Jeni

Mommy to PJ
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Re: New diagnosis

Postby youngwife » Mon Oct 18, 2010 10:30 am

Hi Jeni!

My daughter is 16 now, and was 12 when her symptoms started. From what I have been told, it is best to wait with kids to see if they might out grow the Chiari. Has he had a CINE mri done to check the CSF flow? This might be a good idea if it hasn't been done already.

I am thankful that your son does not live in pain, and I pray that his condition does not deteriorate.

Blessings and prayers,

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: New diagnosis

Postby lttutrow » Mon Oct 18, 2010 12:08 pm

My son was 8 when he was diagnosed, he had the surgery when he was 9. My daughter was 12 when she had the surgery. Though their symptoms were somewhat different, they both had symptoms. Have you thought about a second opinion?
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Re: New diagnosis

Postby medicpt » Mon Oct 18, 2010 8:57 pm

My daughter was diagnosed with a CM1 in July of this year, and she had her decompression on Sept 30. We had symptoms of central sleep apnea and vocal chord paralysis. She is doing much better with her breathing and her voice since the surgery. Our NS was very concerned about her possibly having a syrinx and told us that if she did (which she doesn't) he would definitively recommend a surgical intervention for the Chiari. He seemed very concerned about having a syrinx. Her f/u MRI showed her Chiari was very tight and recommended surgery anyway.... all that to say that you may want to do some research and maybe have a second opinion.

Best wishes and blessings for you and your son PJ

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Re: New diagnosis

Postby mommy0104 » Thu Nov 04, 2010 10:31 am

I apologize for the delay in replying with my appreciation.
Just found out yesterday that I also have Chiari, Mine is 12 mm, and crowding the adjacent cord, which explains a lot about the neck pain I have been having since July 2009, and am tentatively having my decompression surgery in December.

Thanks for all the help!
_Jeni
(mommy to PJ)
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Re: New diagnosis

Postby medicpt » Sat Nov 06, 2010 9:34 pm

I am so sorry to hear that you have been having difficulties too. It is hard enough to be dealing with a child who is having health problems. I wish you the best.
I hope that you have also found some answers to your questions about PJ?
Blessings, wendi2
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