syringmyelia

hi my four year old was diagnosed with syringomyelia in november she has 2 syrinx and the neurosurgon we seen told us at the min its not affecting her but she walks on her tippy toes and also gets alot of head aches and he says he cant explain why she does this he said that the syrinx might just go away can this happen??

[thieb9]

Hi there. First of all let me say sorry that your daughter is going through this.

It is possible for a syrinx to go away on its own.. I think that it depends on the reason that it is there inthe first place. If it formed from a chiari malformation and there is some kind of csf blockage, chances are that it wont go away. Did te NS mention anything about Chiari?

Some people with syringomyelia go through life without it gettin bigger or causing problems. Since she is walking on her tip-toes and having headaches I would possibly be concerned. Usually a dr will monitor  a syrinx with mri's every 6 months to a year.

I would make sure also that the NS you saw does specialize in this condition. 9 years ago I saw a NS who never even mentioned my syrinx. I didn't find out until another NS told me this year, even though I had it 9 years ago.. Mine did get bigger and left me with some permanent nerve damage.

If your not comfortable with what he said, I would get another opinion.

[pamk5]

Hello and welcome! The NS that you saw was he a specialist?  Sounds as though she may need to be checked for tethered cord.  I have read in children that can cause the walking on tiptoes.  That is an associated condition of Chiari malformation and syringomyelia.  Has she been checked for CM?  I am not a NS or even a doc for that matter but I am a mom.  If it were my child I would be getting another opinion with someone who specializes in these conditions.  

[selmaS]

Hi and welcome to the Chiari/.syringomyelia forum.

As Pam mentioned tethered cord can cause the tippy toe walking...I am also curious as to what areas were MRI'd and where the syrinx's r....

U deff need a true chiari specialist in order to get ur questions answered concerning ur DD.....we have a list, it is not intended as a referral, but as a means to help u get started researching to locate the right dr for ur DD.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[samc050]

hanks for the all the answers they have not told me the size of the them all i know is that she has two syrinx and thats bassically all they told me. i dont think he is a specialist in this as he dosnt seem to know any answers im telling him im living in dublin ireland and i have contacted all the childrens hospital and the only name i am getting is the ns that my daughter is attending. it is so fustrating not known what is going on with her and what way it will affect her. she is having another mri on thursday and then were back to see the ns in 2 weeks so im hoping he will have more answers for me than what he did the last time if not i will want to see a ns that has got the answers for me..
thanks for the help :)

[selmaS]

Oh well u will want to contact rod44 , Ray he is in Cork.....and he has a Syrinx and is dealing with the health care over there, he may have some words of wisdom for u.

"selma"

[rod44]

I have sent you a PM :)

I would advise you to get copy's of your child's medical records including MRI scans. There is a charge for the MRI CD of about E10. You need to apply in writing to the medical records department of the hospital requesting the copy's under the Freedom of Information act. When you get the records you can check for pediatric Neurosurgeons who will be willing to look at the scans, unfortunately we don't in my experience have any Neurosurgeons here that you could class as experts in Chiari/Syringomyelia so you may need to send the MRI scans to the UK or the US.