Hello; new to this site.

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

Moderator: pmaxwell

Hello; new to this site.

Postby jondee0 » Sun Jun 03, 2007 8:06 pm

My 10-yr old daughter is, in her doctors' words, unique. She has congenital syringo (from mid-thorax down to the end of the cord) with no known cause. No tethered cord, no Chiari, no tumor, no spina bifida, just this large syrinx that was noted on her first MRI at 17 months. Fortunately, the syrinx has remained unchanged over the years; every time they do another MRI, it looks just as it did at 17 months.

Michaela's never been able to walk unassisted. She can walk with long leg braces and forearm crutches, but prefers to use her purple wheelchair (or sometimes, at home, crawl). Her upper body strength is reduced, and her range of motion in her shoulders is limited. She's developed scoliosis over the past year, and wears a TLSO brace now.

She's a fantastic kid, funny, inquisitive, and a deep thinker. She's also going through some of that normal preteen angst that all my other kids have gone through, sigh! In fact, in most ways, barring her physical limitations, she's pretty much like most other 10 1/2 yr old girls.

I'm still looking to find another person with syringomyelia who is like Michaela. We don't know what the future holds for anyone, of course, but with Michaela's quirks, I can't help but wonder more than usual what the future might hold. I'd love to compare notes if anyone has a child in a similar situation.

Thanks in advance,

Joni, Michaela's mom
jondee0
 

welcome

Postby Sara » Mon Jun 04, 2007 6:46 am

Hi Joni!
Welcome. My daughter was originally dx with idiopathic syringomyelia. Eventually occult tethered cord was found to be the cause. I have a very good friend whose daughter had a large idiopathic syrinx like Michaela. She had a syrinx shunt procedure performed, and when that went bad, she traveled out of state and found that not only did her daughter have a Chiari, but she also had a tethered cord.

So my question is: have you sought additional, expert opinions to make sure it is truly idiopathic, and your surgeon is not missing something? You can be seeing a world renowned brain tumor specialist, but they may not be the best person for idiopathic sm. There are a few doctors who study this issue exclusively. Many times they will review your films through the mail when giving a second opinion.

Here are a few published articles on idiopathic SM that turned out not to be idiopathic. these authors might be people worth contacting. If you are interested in more information on how to do that, just email me at sarap@cfl.rr.com

http://www.ncbi.nlm.nih.gov/sites/entre ... ds=9688115

http://www.ncbi.nlm.nih.gov/sites/entre ... h=15007134

http://www.ncbi.nlm.nih.gov/sites/entre ... h=12450289

http://www.ncbi.nlm.nih.gov/sites/entre ... h=10232534

Sara
Holly's mom
Sara
Site Admin
 
Posts: 572
Joined: Wed May 16, 2007 1:14 pm

"Idiopathic" Syringomyelia

Postby SamanthasMom » Wed Jun 06, 2007 4:31 pm

Hi Joni,

My daughter Samantha is 8 years old and she was diagnosed at 17 months. She could not stand or walk. She screamed when we tried to have her bear weight on her legs, or lifted her legs to change her diaper. An MRI found the syrinx which is now 6mm. They have never found a cause for hers either, although I have not given up. She has had so many MRI's that I have lost count. I have taken her to several Neurosurgeons and they have not found the cause (because her longstanding Neurosurgeon relocated out-of-state, we were forced to find a new NS.)

She began doing things, standing, walking at around 20 months but required physical therapy. She had a pretty quiet time with her back and legs until a few years ago when symptoms started to re-occur. Unfortunately, this was after the NS moved and the new NS we saw kept telling us that her "idiopathic" syrinx should not be causing these symptoms.

In July 2006, a wonderful Neurologist that treats her (we were still searching for a good NS) put her on Neurontin. She takes it 3 times per day. Her dosage has been increased several times.

Last week her new NS (we love him) saw her along with a pain specialist and they recommended a TENS unit, which I picked up yesterday. They also increased her Neurontin again. They told me that we have other options for pain, but I want to stay with the Neurontin for now if possible. She has no side effects and is on the princpal's honor roll at school. Hopefully we can get the dosage right. if we need to try something different, they are happy to help.

I would like, some day to take her to the Chiari Institute and have Dr. Menenses (spelling?) look at her. Our insurance doesn't cover them, and we cannot afford even $100 out-of-pocket at this time because of our situation. But I know one day we will do it. I believe in my heart there is a cause for hers, they just haven't found it.

She gets along quite normally now, just has these terrible episodes with her back and legs. Her legs also tire very easily.

Allie
SamanthasMom
 
Posts: 3
Joined: Sat May 19, 2007 7:21 pm
Location: Atlanta, Georgia


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 8 guests

cron