I had chiari decompression surgery last december my first 2 MRIs post-op looked pretty good. Despite my NS saying that the area where the dura was was tighter he still thought it was successful and my syrinx I have was slightly smaller we were doing ok. In the last month or so I started to get headaches again in the same places from before and found a fluid accumulation on the back upper left side of my head.
This wasn't normal so I called my NS and got a new MRI last week. Got my results and found out today when i went to my NS that unfortunately my surgery failed. It is only the 2nd time it didnt work successfully for him which was very unfortunate and especially for me. So I have fluid accumulation in a few spots and cavities that needs to be removed and another decompression surgery is needed to make more room as the fluid is again making my syrinx bigger.
I am overwelmed less than a year after going through this I do yet again and in the next 4-6 weeks. This time my NS is going to do the surgery with another chiari specialist surgery he affiliates with to use 2 brain power to fix it. He is also making sure i don't have other issues so I am getting metabolic tests, an eye test to make sure I dont have a pressure issue.
I am wondering those who have had to get surgery again what things to ask and look for so this is the last time & is successful?
I want to make sure I am doing everything I can to not have this surgery a third time or other problems. I am thinking of going to another NS as well for another opinion but the headaches are pretty painful and I do want to get this going so things don't get worse. Any insight, advice or ideas are helpful :) thank you!
Em, I like the idea of seeing another NS, but one who specializes in Chiari. This is your brain and spinal cord, and you deserve the smartest and best skilled surgeon to fix it. Please look into Elhers Danlos Syndrome too. Not everybody has it, but there are so many of us chiarians who do, and unfortunately for many EDS chiarians a decompression (a successful one) will not fix the whole problem. Just a few docs/ clinic I know of off hand who screen for the cervical and cranial cervical instabilities that EDS can cause are: Fraser Henderson in MD, Rosner in NC, TCI in Long Island, and maybe Frimm in IL (not too sure about him). I am so sorry the pain and symptoms are back. I know this is hard, but Just keep going, researching, and keeping hope. I hope you get the best doc possible to fix your head.
Thank you both. I appreciate the advice I will for sure be doing that and make sure there’s not other problems. I am hoping to go to mayo clinic in mn where I know a few who had decompression there to check in with another ns. I want to check for eds and hypermobility as well.
I’m so sorry that you are facing another surgery. I hope you complete healing very soon. I noticed you are in mn. If you wouldn’t mind would you share who your ns is and who the chiari specialist he was going to bring in on your case?
We are working with a ns from the u of m for our 17 month old. I’m having a tough time figuring out who is a chiari expert locally. Best wishes to you.