Has anyone had surgery and gone years with no symptoms and then had symptoms return? I had my surgery when i was 12 years old, and have not had any symptoms until the past few months! Im terrified of going through all this again! I have an appointment on september 12th with my neurosurgeon. Should i be worrying about having to have a 2nd surgery?
Sorry i forgot to add that im 25 now so my surgery was 13 years ago
I am not as learned about the other illnesses that can happen with chiari patients,check in on Abby’s posts she has some great sites to go to.I know you must be scared to think about going through another surgery,try to just hang tight and get to your NS hope the Dr. Will shed some light on your situation I’ll keep you in my prayers.
I thought the same things that Lynn said after reading your post. I’m sorry Gretchen, not a good feeling to be faced with a return of symptoms or thought of another surgery. I hope your not in pain. Chime in after your appt to let us know what happened.
Hi Gretchen, I had my surgery in June of 2012 and my dr. told me that since there are so many different ways to do a decompression surgery and with technology constantly advancing there is always a chance for another surgery. My symptoms have all come back. My surgeon did not initially separate my tonsils nor take out the bone beneath the skull ( I forgot the name of it) for fear of CSF leaks. He shaved my skull where the spinal cord meets the skull and tool out most of my C1 to allow more room for the Chiari so I had more flow (I had a blockage) and the tonsils are now lower but not separated. He told me that a second surgery is a possibility down the road and that 20% of people who have it done the way I did will need a second surgery where the bone beneath the skull will need to be removed and an artificial graft will need to be made and put in place and the tonsils separated and all the other fun stuff. Also, they used to use mesh back to hold up the chiari's but now they do not because the instruments that were used to hold them in place sometimes would slip and cause a bleed in the brain. So now they use the graft method. So depending on what you had done when you were 12 could determine if you need surgery now. I would ask your Dr. exactly what you had done then and what if anything he/she would need to do now. I'm sorry for all the details I just asked A LOT of questions when I had mine because I was terrified of a second surgery as well. I hope you don't have to have one. Praying for you. Best of luck!