#48 Networking8 Networking

#48 Networking8 Networking
Monday, February 3, 2025 by Deb Vellines

The Acoustic Neuroma Association offers a program for patients with questions to call and be connected with someone who has been in a similar situation. This is especially helpful when someone doesn’t have a support group or even know anyone who has an acoustic neuroma. What then? You can talk one on one (or email if you prefer), by calling this number 770-205- 8211 and telling what your situation is and what kind of help you need.

Some patients are lucky to live in an area that has a support group. Usually this means a shorter commute to get to a meeting. It also often means a larger city. Here’s the link to find support groups.

For example, thinking about treatment, but confused about the options? It can help to talk to someone who has had the type of surgery you are considering. Same thing with radiation. You can find out directly from other patients how their treatment and recovery progressed. How did someone figure out which doctor to consult? How did they decide if that doctor was the one for them?

I’m a big believer in “the more information the better’ when making a decision. That’s why I’m a big supporter of networking. Whether it’s one-on-one help or help from a support group, talk to others.

I knew I needed help when my primary physician told me I was her only acoustic neuroma patient. The neurosurgeon had told me I definitely needed surgery. I didn’t want to hear that. I had had gall bladder surgery a couple of years previously and it didn’t go well. It was suppose to be outpatient and I didn’t come home for 4 days.

This was in 2003 and I hadn’t yet learned there was such a thing as the Acoustic Neuroma Association. A study of information on the internet told me I had options besides surgery. On the internet, I found someone who actually had an acoustic neuroma. We soon discovered we both lived in the Chicago suburbs. I asked her if she could meet me for a cup of coffee.

Wow! She looked so normal!! Her life after surgery was good. Even though I knew surgery was not for me, I felt such relief knowing life was possible after treatment. I cannot begin to explain how much better I felt about my diagnosis. I learned about the ANA and the booklets they offer with information. I also learned the names of some doctors to get their opinions. Best of all, I learned my neuroma was considered small and I might be a wait and watch patient.

The bottom line of this story – with questions, cast a net for information, lots of information. Some information will not be helpful, but some will be. Some information might not even be true or right for you.

I have reached the point in my recovery it’s time to help others as I was helped. Pass it forward is what this blog is all about.

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Readers: How do you find help? How do you help others? Want to share your story? Your story might contain just the tip someone needs for help on their journey.

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Heavenly Father, Thank you for guiding me to those who helped me. Now help me to offer my help to others. Amen.