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/

I have shared my story on here a couple times, and understand that everyone's experience is their own unique journey with this, but for me personally, the surgery was the best thing that happened to me in the past two years.  I had severe hearing loss, balance issues, and a headache that never went away, the headache lasted for over two years.   The first two days after surgery were absolutely miserable, had me questioning my choice, but by day three things changed drastically.  I was off of all pain medication by the end of day three, not even Tylenol, and I've not had a headache since.  I also did have double vision for about a month and a half but that has resolved itself too.  I very quickly started walking again, and while for the first week or two I described it as looking like a drunk toddler, I was walking unassisted (but not pretty) for up to a half mile at a time by the middle of week two.   Yesterday 8/13 marked 3 months post op for me.   I not only walk normally and rarely have any balance issues, I am actually running 2 miles on the treadmill and training for a 5k.  The surgeon initially said I would be totally deaf in my left ear but they were able to save the nerve for hearing and I actually can hear a little out of that ear.  (Not much, but it wasn't much before surgery either so no big change there) Now keep in mind that I am not a young patient, I am 57.   I would think your recovery could be even better because you have youth on your side.   I don't know what your expectations of normal are, but I feel way better now than before surgery.  Now the incision site is still sensitive, and wearing a hat can cause discomfort, I assume that will eventually go away, and the area sometimes has a numb feeling to it also.  But overall way better than before.   I saw you had another post about scuba diving.  I do not have any experience with that, but I would guess the doctors would advise you to wait quite a while on that since diving involves increased pressure, but that's a good question for your neurosurgeon the next time you talk.