Spina bifida young adults and teens with Chiari

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Spina bifida young adults and teens with Chiari

Postby treehouse » Sun Aug 01, 2010 11:25 am

Hi
I am looking for friends to share experiences and to be adviced.
I would like to meet others who are familar with the syringomelia or syringbulba complication who have had the chiari decompression. Parents with younger children or young adults

Best Regards,
Theresa
treehouse
 
Posts: 1
Joined: Sun Aug 01, 2010 10:05 am

Re: Spina bifida young adults and teens with Chiari

Postby NuChiarian » Sun Aug 01, 2010 2:21 pm

Hi,

I am a young adult with Spina Bifida Myelomeningocele who had decompression surgery just over two months ago.

I feel great! I would totally do the surgery again if I needed to. Because of the SB my chiari caused decreased walking ability so I am in physiotherepy now to help that, and I feel I am improving alot.

I was freaked out when I got diagnosed because there wasn't a lot of information about Chiari as it relates to SB, but I think the procedure to help it is virtually the same. I know how much it helped me.

I'm not familiar with the syringbulba complication however, sorry.
Spinal Decompression and cervical fusion with duralplasty of own tissue/May 2010 for ACM and SM

dx w/ Spina Bifida Myelomeningocele and Hydrocephalus at birth.
NuChiarian
 
Posts: 43
Joined: Tue May 11, 2010 12:05 pm

Re: Spina bifida young adults and teens with Chiari

Postby hbananax0 » Tue Aug 17, 2010 10:58 am

Hello!

I'm 16 and was dx with chiari in 2008. Since then i've had a decompresson and a fusion for cranial cervical instability that was caused by my EDS.

My brother, who's 24 has spina bifida. He wasn't dxed until recently though and actually is in the navy and is serving overseas right now. If only we could all be as unaffected as he is.

Hannah
Chiari 1 Malformation, EDS, Tetherd Cord, Cervical Instablity, Cranial Settling, Occipital Neuralgia, Retroflex Odontoid
ICT @ TCI 9-26-08
ICT, PFD and CCF Oc-C4 @ TCI 1-28-09
http://www.caringbridge.org/visit/hannahpatry
hbananax0
 
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Joined: Wed Jan 07, 2009 5:56 am

Re: Spina bifida young adults and teens with Chiari

Postby Catrine » Mon Dec 05, 2011 2:12 pm

Hello all,

I'm a newbie to the board but wanted to input my 2-cents to this topic.

I have spina bifida (Myelomeningocele) and had my CM II decompression back in 1996 - which makes me a bit older than you. I actually was diagnosed with SM back in 1980 but the doctors failed to explain what it was to me or my parents. I was fine for about 9-10 years post decompression surgery. I was a very independent person, travelling the world, holding down a FT job, etc. But the symptoms came back in spades in 2005. My mistake was thinking that my '96 surgery fixed the problem - again the doctors didn't explain that you don't "fix" SM. My syrinx now runs the entire length of my spinal cord and is very wide in the lumbar region - like us SB people don't already have enough problems in that area. I really wish someone had told me then what I know now.

This is not to scare you or tell you things will get worse - everyone's syrinx(s) are different. I hope you are completely fine for a very long time (forver)!! My message is more a cautionary tale. Keep vigilant for any sign of retuning symptoms and see a dr. with experience in SM. I'm now awaiting spinal shunt surgery as things are so bad, it's the only option left - I've already been through 3 VP shunt ops and ops for trapped ulnar nerves - none of which really helped matters.

Live your life to the full!!! Because when things hit a tipping point all of the sudden life becomes a very different proposition - even for those of us who have always had a disability.

Catrine
Catrine
 


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