So we have returned from our 1st meeting with the neurosurgeon. The news is not good. He said by all appearance that my son seems fine (without outward symptoms), but that his scan is terrible. He is over 11mm herniated and has a HUGE syrinx (almost his entire cord) and his spinal cord is expanded. He said they normally don't operate based on MRI but bc of the syrinx that something has to be done. Basically said if it was his kid he wouldn't wait at all bc of the possibility of irreversible nerve damage. The CSF flow is blocked but I don't recall the extent. I am panicking! He is only 3! A very active 3 year old at that. Anyone have experience with their child needing surgery this young. Its a hard pill to swallow since he has NO symptoms what so ever and for someone to say your seemingly healthy child needs a surgery is scary.
I'm sorry to hear your son needs surgery. It would be hard to accept with him having no symptoms but I see where the doctor is coming from with the syrinx. The good news is that most children seem to bounce back from this procedure much quicker than adults. I personally don't have a child with chiari but I know there are a lot of parents on this forum and hopefully they'll see this and chime in! Best wishes!
Thank you! I hope so too!
I’m so sorry you received this news. My daughter was dxed a few weeks ago by MRI but the NS did not recommend surgery. My daughter will be 1 on the 15th. I can’t imagine how you feel. I hope the surgery is successful and your child has a smooth recovery.
Kay, so sorry you got this news. There are lots of young children who have this surgery, and they do tend to bounce back so much quicker. I get that it’s a hard pill to swallow because of the lack of symptoms, but blocked flow and a syrinx need to be fixed. Symptoms can come on very quickly and can include sleep apnea- something that might go unnoticed. Also, just to reiterate that a benefit that having the surgery at this stage will be less/no permanent neuro deficits. Again, I’m very sorry you are going through this and I have said a prayer for you and your little boy.
Jenn
I'm sorry to hear your little boy needs surgery. Hopefully, his youth will allow him to bounce back quickly and he will return to his active self soon! My thoughts and prayers will be sent your way.
Thanks for all the replies :) I'm very glad to be able to give this update! We are 5 days post op and doing fantastic! Less than 3 days in the hospital and then home!! Hopefully the syrinx will shrink over time! We go back for a follow-up MRI in 3-6 months!!!
Thanks for the update! I'm glad to hear your son is home and on the mend! :)
Wonderful news! Prayers for continued success.
Jenn
I am so pleased your son is doing well, KayBee. May he continue to thrive!