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

Moderator: pmaxwell


Postby Karen Phillips » Thu Mar 06, 2008 1:25 pm

Hi ,
I have been reading on here for about a month.My son Zach is 7 years old
He has chairi 1 and a syrinx,we found out this when he was put in the hospital in late Jan.for a gland infection.They done a MRI and found the chairi and syrinx.He is having surgery on March the 10th at Scottish-Rite Childrens hospital in Atlanta.Can anyone give words of advice.Also is this genetic I have FM and have had it for years .Could I also have Chairi.Any advice would be great.
Karen :?:
User avatar
Karen Phillips
Posts: 62
Joined: Mon Feb 04, 2008 6:28 pm

Postby angie7 » Thu Mar 06, 2008 8:50 pm

My advice would be to seek out a true specialist, like Dr Frim in Chicago or Dr Menezes in Iowa, both are leading experts of CM and they both specialize in peds.

As far as being genetic, there cases where it seems CM is genetic. There are a few mama's on here with them and their children having it as well. They have not located a gene yet, so they are not calling it genetic but if you are having symptoms similiar to CM, and your child has it, I would get it checked out.
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 Kristine » Fri Mar 07, 2008 8:23 am

Hi Karen,

I, too, have wondered if CM is genetic as I have bad migraines and also tingling in my hands at times. I have never had an MRI, though. Ironically, the doctors feel like Emily's CM is acquired and not congenital.

I know what you are feeling right now as you anticipate your son's surgery. Emily just had her brain decompression 4 weeks ago. I'd be more than happy to answer any questions you may have. Our time in the hospital was pretty hard, but she has amazed me with her speedy recovery. Emily went to Dr. Canady in Pensacola, FL.
Posts: 7
Joined: Wed Jan 09, 2008 12:52 am

Postby dtyree » Fri Mar 07, 2008 8:34 am

Karen Phillips - Greetings!! One thing to remember, kids are very durable. They can come out of the most adverse situations when adults cannot!!

I pray that Zach comes back to you with his "old" self and is the vibrant son he once was.

There probably is a playing of genetics. You may want to insist on an MRI just to get answers. Good luck to ya!!

Been called a "walking medical dictionary".
Posts: 1383
Joined: Sat Nov 03, 2007 8:43 pm
Location: Nashville, TN

Postby Chrystal » Fri Mar 07, 2008 3:54 pm


My seven year old daughters surgery was performed at egelston by Dr. Wrubel with Pediatric Neurosurgery whose clinic is based out of Scottish Rite. Dr. Wrubel has been great.

Has your son been having any symptoms? I hope everything goes well. I would be glad to answer any questions about my daughter's surgery.

Posts: 12
Joined: Thu Feb 14, 2008 4:52 pm

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 13 guests