Yesterday in the mail I received an envelope from the Acoustic Neuroma Association, or the ANA. My sisters, Lin and Katie, thought it would be a good idea to sign me up for a year-long membership to the ANA; I absolutely agree! Thank you so much, sissies!
In the envelope were a lot of informational packets about acoustic neuromas, a monthly newsletter, and also a list of people who are on the “willing to talk” list, about 50 of them. A lot of the information about acoustic neuromas I was already pretty familiar with from my doing my own research, but the newsletter was very intriguing. In the newsletter, there were several stories from people who have had acoustic neuromas relating their experiences, along with the latest in acoustic neuroma studies and surgical procedures. There was also quite a bit of information about the upcoming ANA Symposium; it actually happens to be this weekend out in California. Maybe someday I will go!
I found the list of people who are willing to talk extremely interesting. They are from all over the country. The list gave their name, contact information, state, size of their tumor, treatment(s) performed, and when they had their treatment(s) completed. Trudy was almost as big as the biggest tumor listed! However, someone did have a larger one sizing in at 5cm; Trudy was beat by 1mm! There is actually a female from Illinois who had that 5cm tumor and her treatment was performed in 2007. I might reach out to her to see how she is doing now and just to hear another story.
It seems strange reaching out to a complete stranger, but that’s what they’re there for, right? I think it’ll be nice to hear from someone else who went through a similar situation and especially to see how she is doing today. A lot of people on the list had gold eye weights post-surgery. These are used to correct an eyelid that will not close all the way from facial paralysis. I feel so fortunate that I do not need that (knock on wood).
I truly feel I had the best possible doctors that did such an amazing job removing 99% of my tumor. I was talking to my mom and sister today and I actually feel lucky that I’ll walk away from this with just hearing loss in my left ear. My weak facial muscles seem to be getting better every day too! Even Dr. Anderson said he thought it improved when I went to see him last week. With that being said, I realized I never showed you guys my incredible doctors. Here they are—Dr. Douglas Anderson (neurosurgeon) and Dr. John Leonetti (ENT)!
P.S. I think I am finally ready for visitors. Short visits only though! I get really tired from talking 😉