Thinking about my new AN diagnosis

[skier]

I learned about my AN just 2 1/2 weeks ago. I have been trying to figure out what to do next.
I had one MD visit, and will go to a second MD at a second hospital, in two weeks.

Meanwhile, trying to understand treatment options is like a strange puzzle.
- The best treatment option can be "watch and wait" if the tumor is small (mine is), but
- The best time for surgery or radiation treatment is when the tumor is small because it can be a more successful outcome

- Surgery can give a very good outcome, in terms of removing tumor mass, permanently, but ... the vestibular nerve is cut, and hearing loss can be significant to total. Facial nerve can be saved, usually. Complications are present over 10% of the time. But balance can be retrained. A cross-hearing aid can help. Recovery time can be long, but it's unpredictable.
- Radiation seems simpler, especially the procedure and the recovery, but then, in some scenarios, recovery is long and it's unpredictable. And longer term risks are unknown. If one would Like to live a long time after radiation, there are scant answers.
- There is so much judgment in what treatment to use that MDs acknowledge the uncertainty and want the patient to actively participate in decision making. OK, but then that is its own kind of burden.
- And... where to go, whom to trust to treat us.

It seems like I have my mind wrapped around a few facts like this, but I feel still so confused. My plan is to keep talking to peers for support, and MDs for clarification, and see what happens.

Meanwhile I am trying to change my work so it is less stressful on me, in this very strange time of coping with hearing loss, tinnitus and other AN issues.

Thanks to all who share their stories here. It helps to hear them.

[bfoley]

Welcome to our club skier - Sorry you are a member, but we are all very friendly here!

Each person needs to think about their own situation and do what they feel is best.  I am in my 50's.  I picked radiation.  I can always go back for surgery if the need ever arises.  Just had my 3 year post radiation MRI - its not growing at all. I was SSD before the radiation.  Work on balance daily.  Tinnitus constant.  Have been able to WFH with pandemic, and LOVE that.  I have a one eared headset and wear on working ear. 

Things that have helped me are eating better, walking 5 miles a day and getting at least 8 hours sleep.  Right now I have very loud tinnitus as I was chasing northern lights Saturday into Sunday and got very little sleep (and the lights were a BUST!) .  When I don't get enough sleep its louder for 24-48 hours.  You figure out your triggers and work to keep a balance between everything!  Good luck on your journey-

[Greece Lover]

Sorry to hear you had to join the club.  You've got it exactly right here.  One of the weird thing about these tumors is all of the different treatment modalities available.  One "good" thing is you have some time.  But's it's very different than a doctor just saying "here's what you have to do."

I chose surgery for exactly the reasons you outline: I wanted it out.  It also gave me the best chance to save long term hearing.  But it also assume up-front risk as well. 

Good luck on your journey!