New to the ASAP Board.

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

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New to the ASAP Board.

Postby MadysMomma » Sat Oct 24, 2009 9:41 am

Hello my name is Jessica and I have a 1 year old daughter, Madelyn. She was diagnosed with Hypotonia at 4 months of age, then with Syringomyelia at 8 months. Her syrnix goes from T8 or 9 to the base of her spinal cord. The MRI we had in June 09 said it was 3mm in size, not even 2 months later we had another one ( Aug 09) it was at 8mm. Her neurosurgeon saw no sign of cord tethering or chiari but said to have the filum terminale cut, so we had that surgery 9-9-09. Mady just turned 1 on Oct 13 she doesn't bare weight well, doens't crawl on all 4's , she will not take any steps at all or even attempt to while holding her. She is a very happy baby although she has her days. She get PT 2 days a week, has OT once a week and a IEP once a week here in the house. I am new to all of this and was hoping some of you could help guide me along. I dont know if I should stick with her neurosurgeon or find a new one. I just don't feel like Mady is his priority. Anyone else have this surgery? Mady now has CSF leak because of the surgery.

Thanks, Jessica

www.madybell.com
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Re: New to the ASAP Board.

Postby Becky1219 » Sat Oct 24, 2009 4:23 pm

Welcome, Jessica!

My son is two and he had the same surgery (he did have a tethered cord) as your daughter this past June. His surgery went well and he had the quickest hospital stay and recovery of his four major surgeries to date. That being said, I don't think he has seen many (if any) benefits from the surgery and we are seeking a second opinion about having decompression surgery for his chiari and to hopefully help his syringomyelia. Jack didn't 'crawl' until he was about 18 months and he took his first steps around 20 months. At 12 months he wasn't mobile at all and couldn't bear weight for long when positioned to standing. Around 13 months he started to scoot on his bottom, but because he couldn't bear weight on his arms well crawling took much longer. He does wear SMO's which helped him begin bearing weight and now keeps him aligned as he walks. We also used a Benik weighted vest to help him when he first began learning to stand. Jack currently gets PT 1x/wk, OT 2x/wk, ST 2x/wk, and dietician 2x/mo.

Mady is a beautiful strong little girl, I checked out her website! If you would like to check out Jack's:
www.caringbridge.org/visit/jackhufty

Good luck with her journey!
God Bless
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Re: New to the ASAP Board.

Postby jupes » Mon Oct 26, 2009 8:46 am

Hi Jessica and welcome!

Since it has only been a little over a month since the surgery, I would give her more time to heal. Leaks are a complication and can prolong the healing process too. I have heard it can take several months for the syrinx to shrink and may take some time to notice improvement. The NS will usually watch the syrinx with periodic MRI to see if it is shrinking. I would watch her closely to make sure she is not deteriorating or having increased pain or symptoms. Trust your instincts and get help or another opinion if you feel something isn't right.

If she does not improve and the syrinx continues to grow, I would seek another expert opinion. It is always good to get a second or third opinion especially in cases where a cause for the syrinx is unclear. Some ideopathic syrinx are caused by a borderline chiari (this is only recognized by some experts and often missed). Keep educating yourself on this so you know how best to advocate for your daughter. There is a lot of educational material on this site and conquerchiari.org site has great info too.

Pray your daughter show improvement!
(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
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