Greetings my fellow watch and waiters! It has been a long time since I posted in here. This was my go to place when I was diagnosed four years ago. What a journey. There was even one MRI where I had no growth. What a year of excitement that was! However, for me it wasn’t to remain so. My unsteadiness and wonky head increased as well as the mass. What started out as a small pea grew to the size of the lower portion from the last knuckle down of a man’s little finger. The last MRI showed 2/3 growth.
This forum is where I asked lots of questions regarding good doctors. There were several names that came up but I kept seeing Friedman and Schwartz, checked them out and made contact with the coordinator, who just also happened to have been an AN patient of theirs! I started sending my images and reports to them over the years. I live in Minnesota. They would call me right away and consult. They never pushed anything. The plan was watch and wait unless something changed. Middle fossa was the decision I made if surgery was needed.
My mass continued to grow and my wonkiness got worse. I made plans to have surgery and save hearing. Because of Covid and an unforeseen LBBB, my surgery was postponed twice. By the time the restrictions were lifted, I had lost most of my hearing and two weeks ago we flew to San Diego, stayed at the La Jolla House and my mass was removed by the gifted team of Schwartz and Friedman with the trans lab approach. They got it all! The Accoustic Neuroma Program they have there is amazing. There are not enough words to say how pleased, thankful, and impressed my husband and I were with this program. Anyone with questions can email me.
I will begin vestibular therapy locally in a few days and was given exercises to do in San Diego. No headaches. No leaks. No facial paralysis. If your AN should lead you down the same path, do not be afraid. There are people who can help. I applaud watch and waiters and would have kept it up, but it wasn’t possible. There are some in here who scare others with all the horror stories of surgery. I was somewhat frightened by those. You need to hear the other side, too. While you wait, pray and do your research.
All my best to you guys. May your watch and wait status last a lifetime!
