We just had my daughter’s spine MRI with and without contrast. She got the diagnosis after a migraine specialist ordered her Brain scan…She has a 14mm chiari and her spinal cord is a big ok syrinx filled mess…My daughter is amazing and just figured all of her symptoms were normal stuff for a kid with migraines and scoliosis, never complained is on the high honor roll for an advanced reagents diploma, active in plays, chorus and art, even took a school trip to Europe last year…she is my hero I can’t believe now that we’ve been talking and aware, of just how many symptoms she’s been having and just going on with life as she just assumed it was all normal, and/or migraine, scoliosis related, sometimes I wish she was more of a complainer…all though migraines are often a dual diagnosis and she does suffer from those alone since long before her chiari developed to an abnormal size…her left thoracic 40 degree spinal curve is a side effect of her chiari and syrinx…wish I had gone to our new neurologist a few years ago…Hind sight is everything!!! But we see our Neurosurgeon on Wednesday and I’m so glad to be working with a wonderful medical center and a neurologist and neurosurgeon that have been in regular contact with us and with our Pediatrician and orthopedic doctor we decided to go to a bigger city for her neurological appointments!!! I feel confident in them! And the personal attention they have given to both us and her local doctors…I’m so glad to have found this group to hear a more personal version of the multiple sites I’ve studied online!!
Hi Amy, thank you for writing such a positive and uplifting post. It is great to hear good doctor experiences even when the news is 'worse' than you hoped for. I have a really good feeling that you and your daughter are just going to be fine. My best wishes to both of you. Kindest, Jules
Welcome, Amy. Both you and you daughter are simply inspiring. It’s so good to have you here with us! Please continue to share and reach out as you need.
Hugs,
Laurie
Thanks Baltimore baby…but I’m getting a little antsy this Wednesday is the first appointment with our neurosurgeon!!! Wish is luck that whatever is needed or not needed is done or not done…pray that our surgeon is both compassionate and talented…if need be … I’ll let you all know what he says
Best of luck to you and your daughter, hon. You are allowed to be antsy as well here… entirely understandable.
Big hugs!
Laurie
Amy said:
Thanks Baltimore baby…but I’m getting a little antsy this Wednesday is the first appointment with our neurosurgeon!!! Wish is luck that whatever is needed or not needed is done or not done…pray that our surgeon is both compassionate and talented…if need be … I’ll let you all know what he says
I am so glad to hear you are finding solace in you neurologist and Neurosurgeon that makes a lot of difference when it comes down to it. I did not want to know anything at all about the surgery until it was done just my choice. You daughter sounds like a very smart kid let her ask all the questions she wants.
Hi Amy,
My names charlotte I am 24 years old and had my decompression surgery 7 years ago now!! Welcome to the group, My mum was incredibly nervous when I was diagnosed, more so than me I feel, but that's mums!! if you have any questions just ask.
Best wishes to you all. x
I hope that all went well and the antzy has been calmed a little by what you heard from the Doc. I see so many Doc's now that going there should not bother me but it does. I go to each appointment even for Pysch Eval with my nerves at a rattled end with my blood pressure soaring. The only way I am calmed is by knowing that my wife will be there with me each step of the way. I am not allowed to drive much over 12 miles alone because I become to complacent about the what is around me. And the reason why I said that is because the closest Doc is 40 miles away. Anyway hope it was good and the Doc made you feel more comfortable.
Hi! I'm mom to a recently diagnosed chiarian myself. We're awaiting our first neurosurgical consult, too. (We were supposed to be seen last week, but got postponed for three more weeks.) Glad to meet someone else who relates! Looking forward to supporting each other on this journey!