Upcoming kids surgery

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

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Re: Upcoming kids surgery

Postby mlb67 » Mon May 04, 2009 11:02 pm

I think we all need to say a prayer for Madison on May 13 she will be in surgery!
Monica and Miranda
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Re: Upcoming kids surgery

Postby nomadmom » Sat May 09, 2009 8:17 am

My Son Matthew will be having surgery on Friday June 5. They are doing a decompression and tonsil cauterization.

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Re: Upcoming kids surgery

Postby youngwife » Sat May 09, 2009 8:55 am

I will be in prayer for Madison on Wednesday, the 13th. And then keep Matthew in mindful prayer about his surgery in June. As well as offer prayer for these parents who must anguish over the decision and outcome. :(


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: Upcoming kids surgery

Postby mumof4darlings » Tue May 19, 2009 2:40 pm

my 10 year old daughter poppy is having surgery in the uk on the 11th june, after 2 years of finding out what caused her syringomyelia we have a reason! She will be having an angiogram which will be followed by embolisation of her spinal dural arterio venous fistula, which is below her syrinx.we hope that the embolization will work, to avoid her having to be opened up!
I would appreciate any prayers on the day! Not coming from a religious background, i would still love the support from others! its going to be a long scary day!
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Re: Upcoming kids surgery

Postby CamsmomKelly » Mon Jun 08, 2009 9:46 am

My 10yr old Cameren will be having a syringo-pleural shunt placed on June 11th...

Thank you

Chiari,holocord syrinx,scoliosis,Rolandic epilepsy
Decompressions 2005/2006(revision)
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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Location: Hazelwood Missouri

Re: Upcoming kids surgery

Postby whishn » Sun Jul 19, 2009 10:21 am

My 4 year old son, Leo Joe, is scheduled for decompression surgery August 28. He has been diagnosed with chiari malformation and IIH (idiopathic intracranial hypertention). His father and I are very scared about what our little guy is faced with, but hope that he feels much better soon. I have been trying to find out info online, as we have not been told yet all the details of the surgery and what to expect. He is having the surgery done here, at the Cleveland Clinic. I am confident in his neurosurgeon's ability to help him, just don't know what to expect and am a little upset at the lack of information. When they called last week, they said it is going to be done laproscopically(?) and he will only have about a one inch incision. They are going to remove part of the occipital bone and c1 vertebrae. I don't know how long his hospital stay will be, what to expect afterwards, and how limited he will be. Please keep him in your prayers.. Thanks.
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Re: Upcoming kids surgery

Postby MommyToMyCuties » Mon Jul 20, 2009 2:31 pm

Natasha will be having decompression surgery on September 8th at Seattle Childrens..
DD-Natasha-7yr old with 21.40mm CM
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Re: Upcoming kids surgery

Postby NatesMom » Thu Sep 24, 2009 1:50 pm

My 15 month old, Nate, will have DFP with a dura patch on 10-12-09. We just found out about his DX 2 weeks ago, and the surgery is in two and a half weeks. Talk about still trying to adjust! He has a major developmental delay with visual, hearing and coordination impairments. I'm sure he would love to have a beanie baby!
Mom to Nate, a beautiful 1 yr. old with CM1

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Location: Charlotte, NC

Re: Upcoming kids surgery

Postby NatesMom » Thu Oct 08, 2009 2:07 pm

Thank you so much for the beanie baby! It is SOOOO cute! I will be sure to give an update on Monday, as soon as I have one!

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Re: Upcoming kids surgery

Postby JenandLuli » Tue Nov 10, 2009 12:30 am

Luli received her beanie baby unicorn on Saturday before her surgery. It was actually really great when the mail came because we had a bunch of family over as a get together before the surgery... so when she opened it everyone wanted to know who sent it. It was SO GREAT to tell everyone about ASAP and no one could believe that an organization would do that for Luli! :-D
Luli took it to the hospital with her and it was sitting on her pillow next to her or on her bed table looking over her the entire week. So precious!!!
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Upcoming kids surgery

Postby CamrynsMom » Thu Dec 03, 2009 6:23 pm

My daughter Cami will undergo surgery on December 18th to untether her spinal cord. I have a question I'd like to throw out here, if I may.
The info I've read on Syringomyelia here at ASAP is that it is caused by either a CM, Trauma or TSC. Cami has both Chiari and a TSC. My question is: How does one conclude which has caused the multiple syrinx's throughout her spinal cord, and then choose which method of surgery to use to collapse them?
Cami's herniation is 5mm. Our NS doesn't generally operate on those whose herniation's are less than 6mm, and demonstrate significant symptoms. Cami's symptoms of CM are things she can live with, for now. The NS performs 1 or 2 CM surgeries per week here where we live and I trust her medical opinion. She stated that very occasionally, she will see a deeper herniation after the TSC surgery, as though it pulls the tonsils deeper into the spinal column once the syrinx's are collapsed.

I'd love to hear some thoughts on it.
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Re: Upcoming kids surgery

Postby Janice » Wed Dec 09, 2009 1:53 pm

Camryn's Mom, I sent you a private message (PM). Please check your message under "User Control Panel" by clicking "new messages".

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Upcoming kids surgery

Postby nature » Tue Jan 12, 2010 12:46 pm

My Daughter is schduled for Decompression Sugery on Feb 17th at OU Childrens Hospital in Oklahoma City! Thanks for all the info and support from everyone here!
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Re: Upcoming kids surgery

Postby memom » Tue Jan 12, 2010 11:38 pm

Please know that we are hoping for the very best outcome for your daughter and your family. Let us know how things go. Good Luck!

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Upcoming kids surgery

Postby nature » Thu Jan 14, 2010 9:36 am

Thank You so much!!!!
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