Author Topic: meningioma support group?  (Read 2298 times)

cecile k

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meningioma support group?
« on: November 04, 2009, 05:20:23 pm »
Hi all:

I have a friend who is awaiting surgery for a meningioma - would anyone know of an on line support group for this type of brain tumor? I had an AN removal 8 years ago and she has asked me questions about the surgery. I am not sure how similar AN and meningiomas are, other than the fact that they are both usually benign. I hesitate to give too much information because everyone's surgery/recovery is so different.

Thanks for any help you can offer.

Cecile

Jim Scott

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Re: meningioma support group?
« Reply #1 on: November 04, 2009, 05:30:32 pm »
Hi, Cecile ~ and welcome.

I did a quick Google search and found this informative website with a comprehensive explanation of meningiomas.  http://www.mayfieldclinic.com/PE-MENI.htm

I also found this online support group  http://www.meningiomamommas.org/.  Here's another link to another support site http://meningioma.webexone.com/login.asp?loc=&link= (requires registration). 

It's good of you to try and help your friend.  I hope this information will help you to help her.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

epc1970

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Re: meningioma support group?
« Reply #2 on: November 04, 2009, 05:54:13 pm »
Cecile
I actually just read a book called Curveball: When Life Throws You A Brain Tumor by the woman who started and online support group called  Menigioma Mommas. The book was about this woman's journey thru brain surgery to remove a meningioma and the development of the Meningioma Momma website. The book is really good....even if you have an AN not a meningioma.
Erin

Nickittynic

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Re: meningioma support group?
« Reply #3 on: November 04, 2009, 08:29:34 pm »
I think how similar the two surgeries are really depends on where the meningioma is. For my AN, they didn't know if it was an AN or a mening until they "got in there". Either way it was a big cerebellopontine angle tumor, so the approach didn't matter for the tumor type. The thing they told me was that the AN was the "better case scenario" (like there can really be one, right?) since it's less likely to grow back.
If your friend's tumor is in the CPA then probably a lot of the info here will still be applicable!
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

cecile k

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Re: meningioma support group?
« Reply #4 on: November 09, 2009, 12:12:44 pm »
Thanks so much for your replies - I have forwarded the info on to my friend.

Cecile

Debbi

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Re: meningioma support group?
« Reply #5 on: November 23, 2009, 08:22:43 am »
I just wanted to second Erin's comment about the book "Curveball; when life throws you a brain tumor" - I also just read it and loved it.  Her website http://www.meningiomamommas.com is also wonderful.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com