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

Moderator: pmaxwell


Postby shighsmith » Fri Apr 04, 2008 1:43 pm

My 13 year old daughter had decompression surgery Feb 29. The neurosurgeon we use does not open the dura but thin it so that it can stretch. In the past few days her headaches are as bad as they were pre-op. I hate to keep giving her pains meds when they don't even seem to work. I just hate to see her in so much misery.
Posts: 5
Joined: Fri Apr 04, 2008 1:10 pm

Postby angie7 » Fri Apr 04, 2008 8:09 pm

I would contact her surgeon and let him know first thing on Monday.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby jonesjam » Tue Apr 08, 2008 6:07 pm

Hi. I have a 14 year old daughter that had surgery on 03/19/08. They did not open the dura on her either. It has been 3 weeks and we are still having bad headaches. We saw the nuerosurgeon today and they say it just takes time. There is still a lot of swelling from drilling the bone away. Hang in there. Slowly but surely, she is getting better. I know it is just so hard to see them hurt. She is still not back in school. I have been asking myself if surgery was worth it. However, I know it was and in time, she will be better. I hope the same for your son.
Posts: 18
Joined: Mon Jan 14, 2008 4:05 pm

Re: headaches

Postby jocelynxo » Wed May 21, 2008 11:40 pm

Hi, I'm 16 and I have chiari, syringomyelia and scoliosis. I had a decompression surgery when I was 11 and was fine up until last year. I've had headaches since I can remember and it seems that before and after the surgery I always end up at the emergency room getting medication through an IV for such bad pain. I'm from Canada, and my neurosurgeon moved to Michigan. I have one here, but he's hardly qualified to do proper surgery. I went and saw my Michigan nesurosurgeon and he explained to me that because my growing period wasn't done and usually isn't until you're 16, there may need to be more surgery. I continue to get severe headaches and I'm due for surgery any time now. I will have the decompression surgery again due to the bones/tonsils in the c1, c2, and c3 areas growing back. When I had the first surgery, they opened my dura to relieve pressure, and for a while I was okay. I reccommend you contact your neurosurgeon asap and go for another MRI.
Posts: 4
Joined: Wed May 21, 2008 11:28 pm

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 5 guests