Hi all, I’m new here. My 17 month old daughter was diagnosed with chiari after an MRI her gi ordered showed it. The MRI was last in a series of tests ordered to try to determine her yearlong persistent vomiting. Her only other obvious symptom is very poor balance, basically not walking yet. She sometimes acts like she’s got some tingling feelings on her arms and legs.
We had a full spine MRI today that thankfully showed nothing on her spine! What a relief. We are now struggling to decide on surgery we’ve met two neurosurgeons who advice a decompression but aren’t insistant on it… Almost leaving it up to us. It’s obviously a tough decision. I worry if we wait we increase her chances of developing a syrinx or other nerve damage. Her csf flow was essentially blocked and her calls her cerebellum tonsils pegged.
I wish we didn’t have to decide!! Anybody have an experience similar? I’ll take any advice you have to offer.
Thanks, kelly
My 10 month old wasbjust diagnosed. He has a 10mm herniation with reduced CSF space. We go to see a neurosurgeon next thurs. That is a tough decision to make. Sorry you are having to go through all this
My son was diagnosed with Chiari at 14 mos. he had all if your daughters symptoms and much worse. He had a syrinx with his. I would go for the surgery, it helped relieve all of his symptoms pretty much. He was already walking but his gait was awful. He was declining as I suspect you might see with your daughter. Unfortunately her symptoms will not improve and surgery is scary but should relieve her symptoms especially so she can walk.
I am so sorry your daughter is so ill. I can't imagine the pressure you are under to make the right decision. I am not in any way an expert in pediatric CM. I would ask the Dr's if she has the surgeries at her age if it is possible she will have to have the surgeries again. I have read where very young children often have to have it redone. I would also ask them about the possibility of sleep apnea or pressure on her brain stem. If her CSF is blocked it is serious. Children do though recover better than adults and usually have a better prognosis post surgically. Have you asked the NS's why they aren't insistent on the surgery? I would definitely want to know since she has CSF Blockage. Ask them if you should get a third opinion.
As parents we never know if we make the right decisions even in minor situations. I always ask people why God didn't drop an instruction book in my lap when I had my daughter. Sometimes we have to make the best decisions with the information we have & trust we have done the right thing for our children.
I will be praying for you all & I hope that doesn't offend you. I am from the south and that is what we do in times like this....I also sent your Discussion out to the Membership for additional advice. We have some great parent Members !!!!
Kelly, God bless you and your precious baby. I’m so glad she does not have a syrinx that’s something to be glad about. You are doing the right thing for your daughter by getting all the information you can. I do not have children so I can’t offer my experience but I think you are being a wonderful mom. I am glad you are here and I think you will make the right decisions for her future.
Thank you all! And yes, please pray for our little girl. I believe in the power of prayer. Even As a Yankee catholic;) the reason they haven’t insisted is because they said you can never be sure the vomitting or balance is for sure a chiari symptom. Basically it’s tough because she can’t tell us her head hurts ect… I’m worried about sleep apnea as well. They asked if she snored but that’s it. I was also under the impression a csf blockage bought you a ticket to surgery so to speak. There worried she’ll still vomit and we’ll call surgery a failure. My main goal is to prevent further damage or syrinx formation. I’m not as scared of the surgery just want to do what’s best for our daughter.
Toni, thank you for your advice, I hope your son is well.
I think you are wise to consider preventing progression. I COuld tell everyone I had a headache and I was still told it may not be the Chiari causing it.
I was the same, the dr leaves it entirely up to u! I decided to go for surgery, and it was tough… I ended up being in hospital for 8 weeks, got meningitis and developed hydrocephalus and now have a shunt. I am 4 months post op and an doing well ( I’m 32) I have still neck & shoulder pain but I had that b4 … It is tough but I think with chiari you have to prevent progression, I was starting to lose power in my body when the headaches occurred so for me it was time. I hope you get support you need, and know
THe decision you make is the right one for you and your family x
I am truly sorry for you in your situation. All i can do is give you information. 11 days after my birth i had stopped breathing a lot and had a breathing machine at home at birth. This was 1980s. I was slow to walk, slightly mentally under developed still, and had a lot of other symptoms. Peeing constantly just weird things. I had a druggy mother and had to wait til 30 to get surgery. I dont believe it helped. I want to be fixed. I have dizzy blurry issues and body pain spine pain spinal problems nerve issues. I am living a very minimal life. Having said that- surgery probly went pretty well for me. I healed good and drs say im passing fluid. I feel like my head is still being squeezed from the neck. And looking down makes me feel sickly. I still have motion sickness but i can Now read in the car and i never could before. This is the weirdest desiese syndrom. I think getting the fluids where they need to be is important. I hope this informative, because i have fun sharing on here and reading about other people who could actually be like me. I feel so out of place in the world just having to stand aside.
still, and had a lot of other symptoms. Peeing constantly just weird things. I had a druggy mother and had to wait til 30 to get surgery. I dont believe it helped. I want to be fixed. I have dizzy blurry issues and body pain spine pain spinal problems nerve issues. I am living a very minimal life. Having said that- surgery probly went pretty well for me. I healed good and drs say im passing fluid. I feel like my head is still being squeezed from the neck. And looking down makes me feel sickly. I still have motion sickness but i can Now read in the car and i never could before. This is the weirdest desiese syndrom. I think getting the fluids where they need to be is important. I hope this informative, because i have fun sharing on here and reading about other people who could actually be like me. I feel so out of place in the world just having to stand aside.