Syrinx or Syringomyelia

[strafel]

My daughter was diagnoised with a 63 degree curve just last month. We just got her MRI and they saw a syrinx and we have now been referred to a Neurosurgeon at Childrens Los Angeles. Has anyone had recent experience with this...most of the posts have been from 2006?

Thanks, Rob

[flowerpower]

Hi Rob,

You may want to check out the another website, www.spinekids.com. It is mainly for kids (your daughter may like it) but also many parents post there also. you may be able to find more kids/parents there who have had experience with syrinx/syringomelia.

Renee

[Carmell]

Hi Rob,

My son does not have a syrinx, but has another type of spinal cord tethering (fatty filum). A Syrinx is a pocket of fluid along the spinal canal. It becomes a problem when there is too much fluid and pushes on the nerves and tissues along the spine. Some syrinx's are small (milimeters long) while others go the full length of the spine. Some are serious and need surgical treatment (draining and repairing) while others are watched. If they never change, no surgical treatment is needed.

Having a syrinx means you automatically take more precautions with the spine/back. No activities with potential to jar or jolt the spine. Ask the neurosurgeon specific questions. There is a huge spectrum of issues - some mild, some serious.

Treatment for scoliosis takes a slightly different approach too. Bracing can sometimes do more damage than good if the syrinx is serious. Again, more questions for the neurosurgeon.

Try not to read too much about syrinx issues online. The stories tend to be the worst case scenario, and honestly, they are scary. Good luck with the neurosurgeon and keep us posted.

[strafel]

Thanks so much for the information...you are right about the information on the web. It makes it sound very scary. Our approach is to take it one step at a time and keeping my daughter positive as she just started middle school.

Rob

[smileyskl]

When my daughter was diagnosed with scoliosis and had her first MRI, they found a syrinx and we went to the neurosurgeon and it was caused by a tethered cord. We had the cord surgically fixed (not a major operation)_but not a minor one either. The surgery fixed the syrinx but not the scoliosis. I was told the syrinx is just a pocket of fluid on the spinal cord and the tethered cord is one of many, many causes. I was also told that it could recur. The neurosurgeon will be able to tell the exact cause in your case. Good Luck!

[johanne]

syrinx

I had an Harrington rod operation in 1971 in Montreal,Canada.
I had an 85% curve. They use 2 rod to fix it and they had to
use smal metal twisted to hold it in place.
I am now 51, 2 kids, worked all my life. But lately I am going into
more pain ,tried all sort of medication. They found a syrinx at
the d1 level and they can't see if it is longer with the rsm beacause
of the Harrington rod.
Is there anybody that heard about something lake that.
Who could give me some hope...

[Mom37]

If you still need any if

You can private message me and I will give you my email as easier to write back and forth if you want. I am very infrequent on the forum now. Send any questions if I can help. My daughter's severe scoliosis was caused by a syrinx. The syrinx was caused by Chari. See www.asap.org on syrinx. My daughter had surgery for both the syrinx and the scoliosis. My insurance did have in network preferences but allowed out of network at higher rate to us and the insurance had to pay more too for the Neurologist. My daughter had a pediatric neurosurgeon for the syringomyelia/SM and the Chiari I/CM. She had 2 large syrinx and the decompression surgery allowed them to "flatten/or drain" the spinal fluid pockets substantially. They said she would probably have to still have spinal fusion. Her scoliosis still had rapid progression and she still had to have surgery for the scoliosis with a pediatric orthopedic surgeon within 9 months later. We went to Texas Scottish Rite Hospital for Children which do not charge just as Shriner's doesn't. We had gotten a second opinion on her scoliosis not knowing about the Syrinx, at Shriner's in Erie, PA. We went to PA instead of TX since Pa . Landed up getting a third opinion at Scottish Rite, who diagnosed the syrinx and referred us to a great neurosurgeon who worked with us on costs. They took what the insurance would pay and so we were able to go to the doctor we wanted. I recommend Scottish Rite highly as they were the first of three doctors to check for a spinal cord issue. Shriner's was helpful in providing a hotel in Erie, PA. I recommend doing all the research and ask all the questions you can so you can make the best choices possible.