Hi there, I'm Neil Myers and I am the coordinator of the online group "Schwannoma Survivors & Schwannoma Fighters". We have this blog by the same name, and also a Facebook page with approximately 140 members. Probably 95% of those people have either been diagnosed with one or more Scwhannomas, or they have a family member who has.
This short blog is for anyone who is doing research on Schwannomas. We want to let you know that we are here, and some of us would be willing to share some our stories and our medical specifics with anyone who is doing medical research on Schwannomas.
When I founded the page nearly a year ago, I looked around on Facebook and other places to see if there were any groups for people who have had Schwannomas. I didn't find any. Even the medical information available was not very clear, and sometimes simply matters mentioned in very densely worded medical journals. I wanted to make a page that would provide support and information for those who have had or currently have Schwannomas. And one of the stated purposes was to bring light on these tumors - which are not terribly common. (Though I have not read or been made aware of statistics that can state exactly how rare.)
If any Physician or person doing medical research on these tumors would like to contact us, visit us on the facebook page at:
https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
Or email me at: neilmyersart@gmail.com .
We are here. Let us know if we can help!
Neil Myers
Survivor of Thoracic Spinal Schwannoma, removed in 2009
