My daughter was diagnosed with Chiari at age 5 in 2002. She also had a 33% curve in her spine due to a syrinx. She had the decompression surgery and then about 4 weeks later she had to go back in because fluid was building up on the inside of her cerebellum. They went back in and took out the patch and used her own tissue the second time. Everything was great until about 2 years ago when she started having headaches. Long story short the curve in her back went from a 33% to a 37% in a years time and she’s 15 now and it shouldn’t move like that so back into surgery she went. The Dr. said the scare tissue around where she had the first 2 surgeries was almost as hard as bone. He was surprised at how much there was. When she got out of surgery she had no feeling in the right side of her body. She still doesn’t have feeling in the tips of two fingers. She went back to see the orthopedic and her curve is now at a 40%. I really don’t want her to have to go through that surgery on top of everything she has been through. Has anyone gone through both because I’ve herd it’s more complicated to have spinal fusion if you also have Chiari.
My daughter doesn’t have any of those things. This whole thing has just been mind boggling because after the first surgery when they found fluid on the inside of the cerebellum the Dr. said he had never seen that before and put her MRI films online to see if any other surgeon has ever seen that happen. Then 2 years ago she started having these headaches and the Dr said that its very possible that since she has already had 2 decompression surgeries that she’s looking at a 3rd. We had 3 MRI’s done over the 2 years to watch the syrinx and make sure it wasn’t getting larger. She tried several different medications for her headaches which none seemed to work. The syrinx never got any larger so we didn’t want to do surgery unless it was absolutely our last resort. When she went to the orthopedic and he said her back was at a 37% curve and he was concerned that’s when and only why we went back for the 3rd surgery. I’m glad we did because the Dr even said he was shocked at how much scare tissue there was and how hard it was. He even said a blood vessel had grown in it. He did have to do another decompression but he never said the Chiari was back. He did say that he’s never had a patient come out of surgery not being able to feel their entire right side. She spent 4 days in ICU and all the nurses were saying this was a special case, one because they haven’t ever seen someone have this surgery 3 times and then the whole numbness. I think all the Drs there were scratching their heads. It was really scary watching her try and lift her arm up and having no control of it. I just worry if scare tissue will build up again. The Dr. seems to think it won’t and the only reason it did is because she had the first two surgeries done 4 weeks of each other.