Is anyone using this site because a child in their family has Chiari? My 7 yo was just diagnosed with Chiari 1.5. I'm scared to death - they want to do decompression surgery. I don't know if I can put her through this...
Her cerebral tonsils are herniated/descending by 9.25-10 mm. Her brain stem is herniated/descending by 12 mm. At this time, they want to address the cerebral tonsils, making more space in the area. She has no CSF flowing to the back/base of her head...I think from the over crowding.
If you have a child who's been through this, could you write me/comment on this discussion?
My 41/2 grandaughter, Maura was accidentally diagnosed with Chiari in Aug., decompressed on Nov. 7th and she is well on her way to complete recovery. The first week was difficult but so was the first week after her tonsils were removed. I am so happy that they found this condition before she had any damage done. The permanent damage that could be done if you allow this condition to go untreated is much more frightening than the surgery could ever be. I am truly sorry that you are all going through this and I will keep you and your adorable daughter in my prayers. Just keep thinking, if they had not found this she could have had permanent damage that she would have had to deal with the rest of her life. EARLY DIAGNOSIS IS A BLESSING!
Thank you so much for responding! I'm not sure how to find or join the parents group...still learning the sight. But I will find it eventually. Thank you for your encouragement!
Beeba said:
We have many. Please join the parents group so you can connect with them directly. Kids do very well with intervention. Early = less damage = better outcome. A 12 mm herniation and a restriction of csf is significant. Obviously there were symptoms or issues that led to this discovery. If I were all new to this and only read adult posts I think I would find it rather disturbing. But most of us were figured out much later in life. Although you may not feel lucky right now - you are in the fact that it was discovered young and the outcomes are very good for this age. A great mom who knows her kid and looked into things!!
I'm so very glad to hear about your granddaughter!! Actually, yours is the first success story I have heard - I'm blessed that you shared it! Thank you for putting a positive thought in my mind - I've been very down in the dumps about the diagnosis, treatment, and reading one sad story after another. You've given me hope!
pdrum said:
My 41/2 grandaughter, Maura was accidentally diagnosed with Chiari in Aug., decompressed on Nov. 7th and she is well on her way to complete recovery. The first week was difficult but so was the first week after her tonsils were removed. I am so happy that they found this condition before she had any damage done. The permanent damage that could be done if you allow this condition to go untreated is much more frightening than the surgery could ever be. I am truly sorry that you are all going through this and I will keep you and your adorable daughter in my prayers. Just keep thinking, if they had not found this she could have had permanent damage that she would have had to deal with the rest of her life. EARLY DIAGNOSIS IS A BLESSING!
I am a chiari survivor myself and my 7 year old daughter has it as well her surgery is just a short 18 days away its scary and i have my moments but i know it will all be worth it in the end my daughters is 16mm down and no flow mine was only 7mm with no flow i know the pain i went through and could only imagine my daughters pain so when my daughter got diagnosed and i was told how bad hers is i just knew she needed the surgery in the end it is your choice but it will help her greatly