ANA Discussion Forum
AN Community => AN Community => Topic started by: vjharris on November 04, 2006, 11:21:58 am
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Well, I started my AN journey almost 2 years ago...watch and wait, leaning toward radiation. It turns out they are pretty sure I have a meningioma NOT as AN, and that radiation is NOT recommended.
So- I will soon be given a surgery date for a skull-based meningioma from The Cleveland Clinic. (Looks like Thanksgiving, Christmas and my 10 year anniversary ought to be pretty different this year!) :)
I have learned a lot and grown to care about how everyone on this list is doing. Since my risks and treatments are pretty similar to those with ANs, I hope I can continue to be part of this great group.
If anyone can share the immediate after effects of surgery (retrosig) with me, I would appreciate it. I was most concerned with the dizzyness and nausea, but now I'm not sure if I will still have that to deal with. My hearing and balance nerves have been "influenced" by my tumor (ringing in ears, etc.) but hopefully the tumor won't be entangled in them.
Thanks and best wishes to all.
vicki
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Hi
Well, glad you have an answer and happy your treatment is going forward. Good luck to you and hoping that you are on the road to recovery as soon as possible.
Sue in Vancouver
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vj:
While I can't honestly 'congratulate' anyone on having a meningioma instead of an Acoustic Neuroma, it appears as if your physicians have your still-serious situation in hand and have a specific treatment plan for you, which is a positive. Of course you are always welcome on this board. Why not? Please keep us all informed and know that we wish you all the best. :)
Jim
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My goodness, our new career will be AN "care-givers" and such. Yes, we all care and keep us informed.
My best,
Palace
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Perhaps it's a good idea to mention that sometimes an MRI isn't all that easily read re distinguishing between a meningioma and an AN?
Windsong
PS. forgot to say that meningiomas might need a very slightly higher dose of radiation according to what I heard but that's nothing as they use that for Ans too.
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Vicki, I had retro and was very wobbly for the first week then progressed from there. My dizziness was from losing my vestibular nerve but never really had nausea. I also was in bed for two months post surgery due to eye problems. The eye problems were not normal for AN just normal for me. I do everything the hard way LOL Sounds like you're in good hands and keeping you in my prayers that all goes well!
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I am totallly confused. When I last posted, we were told my 2.2 tumor had grown to 2.4 and needed to come out surgically as it was a meningioma, NOT an acoustic neuroma. I got my work prepared to be off for a couple of months and went on medical leave. We went to see the surgeon on Monday to be given a surgery date within the next two to three weeks.
Well, the surgeon comes in and says he thinks the tumor is an acoustic neuroma, and no matter which kind of tumor it is, he thinks I should have gamma knife ??? He says even if I wanted the surgery he couldn't do it until mid January.
My husband may be changing jobs by the end of the year, and we have insurance concerns, which I stressed to all my Dr.s
Now I am waiting at home, trying to get a phone call back from the Dr.s as to just what in the *&%! I am supposed to do.
I'm not sure if I'm caught in some sort of ego struggle between the three docs (radiosurgeon, surgeon and neurologist), or if there was just mis-communication.
I realize my tumor is a little unusual, as it has some components of both acoustic neuroma and meningioma, but I need a little guidance from the "experts" if I am going to make any kind of decision.
I'm stuck with a growing tumor and shrinking time options.
Anybody else have anything like this happen?
vjh
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Hi Vicki, you are lucky that your doctors diagnosed you as having Meningioma for sure. I was diagnosed with AN in December 1998 and had FSR treatment in 2001 but since then I have had some Neurologissts who think that it is Meningioma that I have, not AN. Everything was ok for me until about a year ago when I started having walking problems and severe balance issues. The doctors cannot tell me what is wrong with me now. A neurologist found some white lesions on my brain MRI scans in December 2003 and agin in January 2006 but the doctors say there has been no change since 2003. And they have rulled out MS after vision tests. I am confused. I am don't know what to do now. Why am i having these walking problems now? Physical Therapy did not help me.
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My tumor was also maybe meningioma and maybe AN. Turned out to be the AN.
If you have a meningioma check out a wonderful forum meningiomamommas.org (http://meningiomamommas.org) for support and information.
I think GK is also standard of care for some meningiomas, as well.
Whatever it is, I am sending good healing vibes your way!
Amy