Just Diagnosed What Should We Expect?

My 15 year old daughter was diagnosed with Chiari last month. She is going to have surgery in November. Our NS said that because it is blocking her spinal fluid 100% at one point and the cerebellum tonsils have descended to C2 of her cervical vertebrata - which could have dire consequences if pinched by any severe jarring like a car accident - that we should do the surgery. She has been having headaches for a couple of years. Over the summer she developed tingling in her hands and some blurry vision also a little imbalance.

A follow up MRI showed no syphinx or tether cord which is great!

I am very new to this and am wondering what to expect?? I dont know what post op will be for her or how she will feel etc.

I can’t gI’ve you any sugary insight as I am getting a second opiniOn and hoping to have mine in nov also. I wanted to wish your daughter and family lots of luck.

Hi MrsK...1st off WELCOME!!!!

Oh boy, it is a whole 'nother ball game when it comes to your child..I know I have 2 girls, 11 and almost 15..As moms we worry so much.

From what you posted it sounds like your daughter has a great NS(Neurosurgeon)....Thankfully she was not 'blown off' by the medical profession. ..Unfortunately, many folks with Chiari are misdiagnosed for yrs....So I am thrilled she is getting help.

No Syrinx nor tethered cord...wonderful. The decompression ..I was told by my own NS is a fairly easy operation from the NS standpoint....I would not have believed him so much if I hadn't watched the surgery being done on a small boy..YouTube....At the VERY END of the operation the NS said that technically from his experience as a NS the operation itself is not complicated....however recovery is hard on the patient...the 1st few weeks for sure. I am very glad I saw it...it was from Texas..I believe on YOUTUBE...if you want to watch it.

From the research I have done....teenagers do very well ....see, the longer you have these symptoms and it goes on for yrs b4 you are diagnosed and treated...the harder the recovery and the outcome is not as good as someone who is Dx'd and Tx'd promptly.

I hope my rambling helped some!!!

Blessings to you and your girl....what is her 1st name????


Thanks Mindy! ~ I wish you all the best on your surgery too ~ speedy recovery!

Lori ~ Thank you for the insight, I heard it was different from younger children but was not sure how. I am very thankful that she was diagnosed promptly as I have heard some terrible stories of people suffering for years having additional problems because of it.

I will have to check on youtube for that video I feel much better when I know what to expect!

Oh my daughters name is Grace :)

Thank you so much!!