kids beindiagnosed

[amandaj371]

hello my 5 year old daughter was just officially diagnosed with Chiari 0, with a syrinx. It has grown a little over the past year and now our new neurosurgeon says that we rescan in 9 months and then decide surgery or wait some more. the fact is i dont think i can handle another surgery on her. last january she was knocked over by a dog on a rope and suffered a subderal hematoma. she had to have a crainiotomy last june. when our dr said surgery again i wanted to scream.

heres my question. is there anyone on this forum that has kids that have been diagnosed, had the surgery or anything like that. what are the syptoms. my ns says noone knows if this is genetic or not. but i have a lot of headaches and now am wondering if i should have an updated mri to see if i have this too.

im glad that i found this forum to voice my concerns and questions. than ks  for whoever started it

amandaj

[*Stormy*]

Hello and Welcome

As Selma said, you will find a wealth of information from other moms here that have been through it. I agree that if she already has a syrinx then something will have to be done about it. Did anyone comment on whether the incident with the dog could have caused the syrinx? I have heard that injury can sometimes cause one too and it sounds like she fell pretty hard.

For kids, from what I have seen the symptoms are pretty much like us adults experience but they sometimes have a harder time expressing them.
Here is a link of the more common symptoms from our health pages:
http://www.medhelp.org/health_pages/Neurological-Disorders/List-Of-Chiari-Symptoms/show/1024?cid=186

I got the same answers about it being genetic but I have seen so many families that have more than one member with it that it is just too coincidental to not be hereditary. I would go and get that MRI if you can.

Good luck and I am so sorry that you are going through this with your daughter...I have 3 boys and can only imagine how tough it would be.

Take care
Carolyn

[selmaS]

Hi and welcome to the chiari forum.

We do have several parents of children with chiari..several have had surgery already.....I do understand ur not wanting to put a child thru this, however when u have a syrinx already with a chiari0 I am sure it indicates a CSF blockage.....chiarians r advised to have surgery to help prevent a syrinx from forming...which can cause permanent nerve damage if it gets too large and impinges the nerves .....Do get an opinion from a true chiari specialist.

I would also consider getting an MRI to see if ur HA's r related to this condition.

We r happy to have u join our chiari family, so sorry for the reasons u had to seek us out.....having a child with ne health concern is upsetting and I hope u r able to find the answers u r looking for.

"selma"