ANA Discussion Forum
General Category => AN Issues => Topic started by: Roggae on September 25, 2023, 12:49:18 am
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Just received MRI report. Probable CPA meningioma 2.3 x 1.5 x 1.3 cm impacting inner ear. Symptoms are asymmetrical tinnitus and significant hearing loss. Knew something was wrong. Figured AN but probably not. Will meet with ent for next steps. 49 yo M. Don’t know if meningioma is right for this forum.
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This forum has mostly resources for those affected by Acoustic Neuroma in some way, either as patients or caregivers.
You may find more of what you are looking for if you find a support group strictly for your diagnosis, but you are welcome to stay since some of us have also had to deal with meningiomas on top of an AN.
Marla B
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Thanks Marla. Not sure where to go at this point.
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Hi, My sister was just diagnosed with a meningioma. Since I have gotten a lot of help from this board for many years I went in search of a support group for her. I found two by typing a search for meningioma support group online. The first one is called meningioma mommas, the second one is the Stanford Medicine Heath care site. I don't know anything about either board but I imagine they could help you. As Marla said, you are welcome to stay as there are others on the board that have dealt with a meningioma. I joined the group when I had a Facial Nerve Tumor removed in 1992, there wasn't a support group for me but a lot of my issues are similar to an Acoustic Neuroma which I was originally diagnosed with.
I hope one of these support groups can help you get the answers you need.
Good luck, Jill
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Thanks Jill. I am not on FB but may join to get access to MM. I have a first visit with Chang at Stanford next week. I’ve also reached out to Schwartz at UCSD. I’ve come to learn that ANs aren’t CPA meningiomas but reading through people’s accounts here are helping me to wrap my head around what’s to come. Lots of strong and inspiring people here.
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You're welcome! I'm not on Facebook either but have been tempted to join for reasons such as yours. Please let us know how your visit with Chang goes. I'm glad to hear that reading the posts have helped you. I've gotten a lot of good information and help from this site, things you don't get from the doctors sometimes as they aren't the ones living with a tumor or the results of having one. Take Care, Jill
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I’ve chatted with Friedman. He’s indicated it’s accessible via surgery. I have a call with he and Schwartz Wednesday. Also a call with Chang that day. It’s up against my brain stem and sounds pretty uncommon. I’ve written a number of scientific papers in my life. Didn’t ever think I’d end up the subject of one :-/
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I'm glad to hear the meningioma is accessible via surgery. Please let us know what you learn from the phone calls. I'm assuming they will want to do surgery fairly soon because of the location. Of course that's just a guess. I'm sure this scientific paper is one you wish wouldn't be written. Hopefully it helps someone else in the future! Jill
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Roggae. I had an almost identical diagnosis, CPA meningioma 1.7x1.3x1.7 and had retrosigmoid surgery performed in March at University of Virginia with Dr Asthagiri & Dr Kesser. I’m thankful to say that they were able to remove 100% of the tumor and all nerve functions remain in tact, including hearing.
Initial diagnosis was AN but was changed to meningioma and confirmed after pathology. I’m happy to discuss any questions you might have as you process this difficult diagnosis. It’s a scary thing, and reading through this forum was extremely helpful for me to get an idea of what to expect leading up to surgery, even if it’s not exactly the same diagnosis.
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Just saw your reply. Thanks. Yeah, it’s scary and looming now that Xmas has passed. Surgery is Jan 30. I feel good about where I’ll be treated and just trying to stay busy. Washed and resealed the kitchen floor grout today. Tomorrow the kitchen gets a deep clean. Thanks for the reply.
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If you run out of things to do, we could use some grout work around here! Good luck!
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lol. Kitchen cleaning turned into complete decluttering and reorganization. This is what happens when my wife leaves town for a week. I’m going to start a business offering these services post-op so stay tuned ;)