As I move through this journey of AN, I wanted to do the same as all that have gone before and document my journey so that it might someday help future AN's peeps.
In April 2019 I woke one morning and was not able to hear about of my left ear. Of course I went to the doctor and they said probably too many years in an engine room (loud noises) and this was going to be the new normal for my ear. However, the doctor said just to cover all bases, he would order an MRI to check just in the off chance it was a AN. The chances of that were small so he didn't think it would be a AN.
Well, as it turned out, I had a small AN in my left ear - .4 cm. Recommended I do a WW, and do a MRI at the 6 month mark.
August of 2019 I did a follow on MRI at OHSU with Dr. Gupta and the measurement came back at .7 cm. I attributed the measurement difference to a different machine and the correct doctor, measured it differently....
Dr. Gupta said lets continue to WW and come back a year later for another MRI. So August 2020 I went back to OHSU for my MRI. I got the call a few days later and knew it was going to be an interesting conversation when his first words were "how you feeling?"
Dr. Gupta: Well you have one of the most impressive fast growing AN's I have seen in a long time. You basically doubled in a year, it now measures 1.7 cm.
Made the appointment to go in and discuss the options. He did pass that he was interested in the Translab for me, and before our appt that would give me time to research the procedure. I also asked about radiation and he said yes it is small enough, after our appt. I can refer you if you would like.
After the appointment still went for the appointment with Dr. Jaboin for radiation consult. Make a long story longer, I am moving forward with radiation. Dr. Jaboin passed that due to the location of the AN and on my brain stem, he wanted to break up the treatment 3 - 5 small doses. I was thinking CK, but at my simulation appt and another MRI later, he said the radiation was going to be Proton.
Dr. Jaboin would like to do 3 treatments, starting Tuesday, Thursday and Friday. Once I start I will continue to add to the post so that the info is out there.
Hope this helps.
Left ear AN
.4 cm - April 2019
.7 cm - Aug 2019
1.7 cm AN - Aug 2020
Sept 2020 start 3 rounds of Proton Therapy