Hi Don,

The Adhear was terrible. I used it for less than 24 hours. It made little difference in my hearing, and left me wiht a sore area where it attached for several days. I'm sad I wasted 6 weeks waiting to try it. I've since learned on a BAHA Facebook group, that everyone says the same thing about it; utterly out of date and not much help with hearing. I will try the BAHA "softband" next, though that same community warns that it is no where as good as the real BAHA implant. I'm using a Cros system now, which is so so.

Like Richcooks I went to a radiation oncologist for my AN 5 years ago. I had fractionated CK. The centre a private facility -5 D Clinics in Perth - mainly treated cancer tumors however the team itself had many years experience with radiotherapy. My own Professor well over 30 years. The team included a Physics chap, a neurobiologist etc. I had 3 fractions 5 years ago and no side effects my hearing still 87% (I see an audiologist every year) balance totally fine. I had nerve pain but that turned out to be TMJ and post vax or Covid reactivation of virus maybe herpes simplex (or so a neuro said who I saw this year re I was worried I had trigeminal neuralgia). It has gone now and I am back to being pain free. Have had no contrast MRI past 5 years and it has shrunk by half (was cystic but that disappeared after treatment).

  I wish I can give you great advice on how to pick the right Doctor to radiate your AN.   I looked at it from a practical point of view.   Once I decided on Fractionated Stereotactic Radiation (FSR) I searched for someone who does that type of treatment.   I saw my AN as any other tumor in the brain and would ask the Doctors if they treat brain tumors.  Of course I asked if they had experience with ANs.  Is my AN a good target for you to engage?  What challenges does the location of my tumor present?  How is engaging a AN different from other types of brain tumors?  I saw a neurologist once and told him that I was leaning toward FSR treatment and what was his opinion and does he think my AN makes a good target.   I chose the one who took the time to address all my questions, and allay my fears.  I felt all were honest about their results and I made a choice.  He is a local Oncologist treated all kinds of brain tumors including ANs.

  Now 14 years since my treatment the Radiation Oncologist who treated me is the only Doctor I see.   I get am MRI every 2 years and go see him and things are still fine.  I never lost any additional hearing as a result of the treatment.  As a side note, my brother also has a AN and he chose Gamma Knife because that is the technology his Doctor had, he lost his hearing in his affected ear.   I highly recommend you break up the Radiation treatments into smaller doses.

  Hope this helps and best of luck.  Remember there are many many successful AN patients out there.  You are not alone. 

Regards,
Rich

Thank you sooo much for your response and information. I really appreciate it! I have heard it is a good idea to wait a bit before treatment to see, as sometimes it quits growing. I wonder what the statistics are, I'll have to keep looking. Thanks again.

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