That's very good news Stella! I'm going for third MRI, 3 years post GK. They gave me annual MRI plan for 5 years post GK. So far my AN is stable and reducing a little. Looking forward to having a break on MRI like yours in the near future:)

Hi all,

I’m six months postop with very little paralysis progress. Emotionally and mentally, it’s time for me to start looking for the best possible reanimation surgery so that I can move forward with my life.

My first question is how long did most of you wait to get facial reanimation? I’ve tried my best to let my body heal and done everything from Acupuncture, massage, facial physical therapy, cranial, sacral, massage, red light therapy, rest, exercise, a healthy diet with zero alcohol or caffeine and meditation and yet here I am. I’ve done my best.

My second question is, can you please share any recommendations for the best possible surgeon. I will go anywhere geographically in the United States and I will pay whatever it takes to get this done right. I am seeing the facial plastics person at my home state where I had my AN surgery done but I now have trust issues here becuase of my outcome and want to loll around.

Thank you for any help, support and guidance. I appreciate it in advance. 🙏🏻

This was probably the earliest symptom that started impacting me, about three years before mine was discovered.  I also fell into the same boat thinking ADHD related, though being in my forties, I found myself asking "why now?" It was probably the most mysterious and vexing symptom for me for a long time - I had blood/hormone/vitamin panels all run, monitored sleep, etc.  Most of my symptoms were disguised by the fact that I document live music from within the pit 3-5 nights a week, so dehydration, interrupted sleep patterns, exposure to loud music and occasional kicks or punches to the face seemed more likely causes for brain fog, chronic fatigue, lightheadedness, loss of hearing (ironically, my suggesting an MRI to my doctor just to rule out undiagnosed concussions was how we found it relatively early (mine is specifically a VS at 15mm).  I've found various things can influence it, such as barometric pressure or stress - and sometimes simply taking asprin with ibuprophen provides greater clarity than adderall - taking meticulous notes on a variety of factors helps me identify potential triggers and ways to mitigate.

Thats great news! And very interesting on the Keytruda too! I read this today also re an immune therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8162073/run 3

Thanks for sharing that link! Really helpful to see more info on immune therapy and its potential effects. It’s encouraging to know there are positive cases out there.

Thats great news! And very interesting on the Keytruda too! I read this today also re an immune therapy: https://pmc.ncbi.nlm.nih.gov/articles/PMC8162073/