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Chiari Malformation Community
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Avatar universal

2 YEAR OLD RECENTLY DIAGNOSED HELP SURGERY OR NOT TO DO SURGERY!!!

My son will be third generation in my family to have chiari malformation type 1. For four days he had debilitating head pain which lead to MRI which lead to his dx. I see a specialist at All Children's Hospital. She recommended surgery but said we could monitor his symptoms after four HORRIBLE days his head pain has cleared. he doesn't have build up of fluid in his spine but did have two days of strange painless limping. I called to ask the surgeon about it but the MEDICAL ASSISTANT disregarded my concerns not even letting the NS know. The limping ALSO subsided. I am going to set up an appointment to see the NS next week to discuss things further. I feel great about the NS but very upset with the assistant. No one in my family has had the decompression surgery but all live with TERRIBLE head pain my mother gets pain injections for the pain and I unfortunately have no insurance to have surgery as an option... i live in pain everyday.

My overall question is i don't know if i should jump to surgery with my child or WAIT for things to get worse... my fear is he is very small and the head pains have stopped should i wait for them to return as im sure they will or wait. Logic tell me to get the surgery but the mother in me is deathly terrified..

please any advice or story would be of great help!!
2 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

Chiari symptoms do cycle and with the crazy weather we are having this winter it is even affecting those of us who have had surgery.....

Surgery is only needed if he has a CSF obstruction....Surgery does not always eliminate symptoms...some mayb, but ALL, not something to have surgery for....

Make sure u have a true Chiari specialist and they do testing to rule out ALL related conditions and even non related so u know the best course of action.

I know it is not easy to see ur child in pain, but try and find out more about how his Chiari is affecting him and his overall health first.
Avatar universal
I don't have any advice as I was diagnosed as an adult (of course looking back had symptoms since child hood) but I wanted to offer you support. What a scary thing to go through!!! CSF flow would be a determining factor I am sure but quality of life would be so important to consider as well. Good luck!
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