Chiari Online Support Group

19 month old decompression surgery

I finally got the call yesterday around 530pm. Our 19 month olds MRI came back and we were told his chiari was really tight, and there is fluid build up. The Dr wants to operate. I’m terrified but also relieved. This is the same Dr that did my husband’s surgery 24 years ago. I keep telling myself that he’s at the best place he can be at, Duke is an amazing hospital and his Dr is over qualified. But he’s so little, and I worry about him. I’m so mad at these doctors here in my hometown. Everyone I seen for this condition told me I was crazy, literally, and that there was nothing wrong with him. I was told by his neurologist it was mild, that I shouldn’t push this because it’s hard on him, that he had no symptoms, that nothing will be done, and he dropped him as a patient. If course, his tune has changed since Duke got involved and his neurosurgeon told him he needed to continue to monitor his meds. The pulmonary Dr told me that sleep studies were too hard for children, that he seen his scans and they weren’t that bad, and I shouldn’t be asking for a sleep study. I told him 3 times within 5 minutes, he was a breathing Dr, not a neurosurgeon, his neurosurgeon said do it, so do it. Then that never called with the results, I had to call them.

I’m so glad I fought for my son, that I was his voice. Even when family told me I was wrong, I knew that he needed me to speak up for him. We find out the 26th when the surgery will happen. I seen hospital recovery can be anywhere from 1-5 days with 4-6 weeks at home. I’m just praying the actual surgery doesn’t last too long and that our little one on the way stays put for a while. She’s due August 23!

 So sorry that your little one is already manifesting severe Chiari symptoms!  

 However,  I have also heard that Duke is fantastic with Pediatric Chiari decompression.  I know a 6-year old who had her surgery there.  Prior to the decompression surgery, she was an epileptic.   Had seizures constantly.  After her surgery at Duke, she has not had a single seizure and is doing very well.   I've also had my decompression surgery in NC, and my neurosurgeon in Hendersonville told me that although he only does Chiari surgery on 18-yr olds and up,  he sends all his pediatric cases to Duke.    So,  sounds like your little one is in the best of hands if a surgery is to be done.   I'll pray all goes well.

I LOVE Duke. Anyone near nc that can get there, it’s worth it. Dr Fuchs is amazing. This man is a blessing for sure. He is the Chief of pediatric neurology and even set up a foundation to for children in from other countries who need operations that cannot afford it. I’m a little biased because he saved my husband’s life, but he truly is wonderful. I’ve fought tooth and nail with these stupid doctors in Asheville. They all look at you like you’re crazy. In fact, they’ve pretty much told me I was. Then I go to Duke and they all understand. They don’t care to look twice or listen to my concerns. Mission children’s hospital here is the worst! They know they’re the only pediatric specialist within miles, so they just don’t care. They’re argumentative and half of the time, his Drs didn’t seem to know his case even though we’ve seen them multiple times. I’m very happy that I pushed for a second opinion and got him to Duke.

So sorry to hear. However I feel kids are more resilient to surgeries. Keep us posted. Prayers are with you.

Sorry to hear about your little one.I love Duke that is where my Dr is Dr Mhoon.