#68 AN Facebook Group

#68 AN Facebook Group
Tuesday, February 4, 2025 by Deb Vellines

In blog # 62 I briefly mentioned the AN Facebook Group. It’s a super place to ask questions and get help. That’s the good news. The bad news is that the answers can be confusing because they frequently are contradictory. What this means is what works best for one person may not be good for another person. This is especially true when it comes to questions about treatment.

Some people swear that surgery is the one and only answer for the treatment of an acoustic neuroma. Others say that radiation is the way to go. Still, others say do nothing with it. That last option can be best if your tumor is very small and you have had only one MRI. Good advice here is to wait 6 months and have another MRI to see if it is growing.

A wise person told me shortly after my diagnosis when I was getting conflicting advice, “You’ll know when it’s the right doctor and the right time.” After seeing surgeons and radiologists, I had always left their offices either in tears of frustration or with more confusion than before the appointment.

Then, one time I left an office feeling peace and ready to move forward with treatment. It all felt right.

Back to the Facebook AN Group questions and comments. I have included three links within the group to some general information. But first here is the link to join the group. https://www.facebook.com/groups/78633792319

As we start to socialize more with our vaccinations this article has some great tips to help us hear better in social situations. https://blog.medel.com/5-ways-to-make-dining-out-easier-with-hearing-loss/

This next link will take you to the acoustic neuroma video library with videos under the following topics. When you click on one of the topics, a selection of videos is offered. Whatever your interest, question, or problem, one of these topics will give you a lot of info. https://www.anausa.org/learn-about-acoustic-neuroma/video-library?fbclid=I

AN Studies
Balance Issues
Cognitive/Emotional Issues
Decision Making
Facial/Eye Issues
General
Headache
Hearing/Audiology/Tinnitus
Microsurgery
Quality of Life/New Normal
Radiation
Regrowth/Post-Treatment Issues
Treatment Options

Have you ever heard of spoon therapy? It’s a clever way of thinking about energy. It demonstrates how each activity we do requires a certain amount of energy or a certain number of spoons. If you are totally healthy, you have an unlimited number of spoons. The article suggests that counting our spoons can help us with our energy expenditure. https://www.facebook.com/groups/78633792319/search/?q=spoons

I don’t agree with the number of spoons needed for various activities; for example, I don’t need any spoons for ironing because I don’t iron anything. Also, I don’t need any spoons for watching TV. But when it comes to exercise and social interaction I need maybe 8 to 10. The idea we only have so many spoons and be careful how we use them, is good.

These three links give you an idea of the information available in the Facebook AN Group. If you ask a question, again be prepared for lots of answers. Some of them will be opposite a previous answer.

*****

Readers: wishing you lots of spoons.

*****

Dear Jesus, I pray for more energy. Help me to use my available energy in wise ways. Help me to say, “No thanks” if an activity is more than I can handle. Amen.

My grace is sufficient for you, for my power is made perfect in weakness.

2 Corinthians 12:9