Chiari Online Support Group

Mom in search for advice

Good Morning, My 16 yr old was diagnosed with Chiari last year. Watching her suffer everyday is by far the hardest thing a parent has to do. I try to help her but she feels that no one can help her. She goes for surgery (decompression w/ duraplasty) on July 7th. Her Neurosurgeon is the best. Very Patient with her and very nice. He answers any questions she may have. I am looking to see if anyone has any advice on how to help her prepare for surgery and any advice on helping me help her after surgery. What can I do to help her get through it.

Thank you,

Carrie

Carrie,

I completely understand the nervousness your daughter is feeling. I was just diagnosed in January and am 12 days out from my first decompression. Although I work in the medical field, I too was nervous. It’s a natural, healthy reaction. Has your daughter ever had a surgical procedure before where general anesthesia was required? I want to tell you and her to relax and trust your surgeon. If you have someone that specializes in Chiari there is no need to worry because chances are they’ve performed this procedure hundreds of times. Just do as the nurses tell you. When you are in the recovery phase, it may be rough in the beginning but it should get better. It isn’t anything worse than what she’s experienced with her Chiari symptoms. I wish I could tell you more, but I’m still adjusting to the extra spinal fluid and get headaches. I wish you all the best. Just tell her to be brave and before she knows it she’ll be feeling better.

Jen

Thank you very much Jen, She has never had surgery before so I think this is where alot of her anxiety is from. She feels like she is a freak in school and feels like no one understands her. Very hard trying to talk to her when she knows I do not know how she feels. I tried to get her to go on here and talk to people maybe even kids her age but she just is not hearing me right now. :( I know everything will be ok, Just worried on how she is going to be.

No problem Carrie. I’d be willing to talk to her if she feels up to it. I have a 15 yr old boy so… yeah. Many kids have difficulty seeking help, even when they know they need it.

Sent you a pm. :slight_smile:

Hi Carrie

My 12 year old - Tanner also has it - he says I must send your daughter lots of love.

He hasn't had surgery but suffers daily - as a mom I feel your pain. We live in South Africa - we don't have walk in centres - nobody seems to have even heard of it so we not rushing to do anything.

Thinking of you

Vanessa

Lots of love and understanding! Just knowing you understand is a great step. Neck massages and ice gell packs give some relief. as an adult survivor it is hard for me to imagine a child experiencing this kind of pain. I can say surgery helped. Not cured but better. Good luck!
Cappu

How did your daughter's surgery go on July 7th?

Please let us know - Tanner said a prayer for her - now he is asking me.

Hello, Kassie did very well. She was in the hospital for 5 days, She is getting some headaches again which we are monitoring and watching carefully. She is resuming normal activities lately which is great! She will go for a new MRI in next few weeks and that will let us know exactly if surgery was successful. Thank you so much for asking! How is Tanner doing?