Chiari Online Support Group

Finally diagnosed and lots of questions


#1

Hi everyone
After noticing for the last year that my headaches, dizzy spells, weird body temperature changes, pins and needles in my extremities etc were not going away I sought out a neurologist who basically told me I was a hypochondriac and barely spent time going over my MRI. A few weeks ago I couldn’t take the pain and saw a neurosurgeon, thankfully my insurancd allows this. Sure enough not only do I have a Chiari, but it’s 7mm. And I may be having seizures also. 24 hour in home EEG being done and an in home central sleep apnea test. I am 25, I have a boyfriend who is in police academy and I don’t want to stress him out with all my health issues, though he’s been great. I am looking to find out if most people have surgery and if you did, did you feel it was a success, how long was your recovery/time back to work (I work in a school as a school social worker), and also do you have any advice for someone who is trying to decide about what ways to treat this issue (surgery versus other routes). I was told by someone if I don’t do surgery some symptoms may get so bad once I finally do surgery those symptoms won’t go away? Help! Lol


#2

I have a 7mm herniation also and some days I am fine and other days I can’t work, move, etc… I have been to multiple neurosurgeons and neurologists and can’t find a neurosurgeon who is willing to do the surgery…I feel ultimately it should be my decision as it affects my quality of life and they don’t know for sure how the surgery will affect me (either good or bad).


#3

I had surgery on October 24th of this year. I saw a Chiari Specialist for surgery. I would say my surgery was successful. So far I have none of the symptoms I had prior to surgery. My recovery was filled with setbacks and it wasn’t until the 9 week mark that I started feeling good. I had Asceptic and Bacterial Meniningitis along with a Pulmonary Embolism. My surgery took 2 hours and 45 minutes and there were no complications with the actual surgery. My surgeon even managed to avoid shaving my hair. She gave me a ton of tiny little braids to expose the surgery site. I was a textbook case - herniation of the tonsils, syrinx in my spine in 2 areas. I didn’t have any issues with my arachnoid membrane which I guess makes a significant difference in how successful this surgery can be. She cauterized my tonsils, shaved part of C1 and C2 and used my own skin for the durapatch. My syrinx have resolved and the CSF is flowing normally at this time. I went back to work 11 weeks after surgery. I met someone else through all this that had surgery in December and was back to work after 3 weeks. Hers was successful also and she is free of her Chiari issues as well. Many are not so you will hear lots of stories that were not successful. My suggestion is to find a top notch surgeon that is familiar with Chiari.


#4

Thank you all! Surgeon says I am not a candidate and I went to 2 who are both Chiari experts. While I am in pain often I don’t have a syrinx and no block of CSF. They feel the risks of surgery outweighs the benefits right now and will monitor instead. I am ok with this, and trying PT and massage with individuals who know what Chiari is-my first PT did not and I stopped after 2 visits, not worth the risk. Hopefully we can manage for a while because I worry surgery would hurt me more as it has for many others


#5

I think you got sound advice from your surgeon!