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Author Topic: Meningiomas  (Read 1480 times)

Nicole222

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Meningiomas
« on: July 12, 2008, 12:59:48 pm »
Does anyone know of a support site similar to this one for people with meningiomas.  I know someone who has 3 and really needs support.

Any suggestions would be greatly appreciated.   Thanks, Nicole :)
« Last Edit: July 12, 2008, 01:19:54 pm by Nicole222 »
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Had surgery (retrosigmoid) May 9th, 2008 to remove a 3.5cm AN from left side.
Home one week later, no facial nerve damage. 
SSD -Left ear.
Thankful daily for fantastic surgeons and wonderful family and friends.
34 years old.  Married mommy to Jordan, 23 months.

cmp

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Re: Meningiomas
« Reply #1 on: July 12, 2008, 01:36:04 pm »
Hi Nicole--

Here is a link to the page of regional and online support groups at the "Brain Tumor Foundation" site:

http://www.braintumorfoundation.org/btsm_supportgroups.php

If you scroll all the way the page, there are two online groups that focus on meningiomas.

Sorry to hear about your friend, and hope this info may help a bit.

Carrie
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5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

sgerrard

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Re: Meningiomas
« Reply #2 on: July 12, 2008, 07:08:14 pm »
Hi Nicole,

If she has no luck finding one, she is always welcome to join us. We have a few members who have or had meningiomas, and besides, we take in all sorts of strays and misfits - any wonky-head symptom or strange blob in your in head is good enough. :)

Steve

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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

MaryBKAriz

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Re: Meningiomas
« Reply #3 on: July 12, 2008, 07:25:17 pm »
Below is a site for your friend. Of course all are welcome here, too.

I read the book the women wrote about her experiences and then started the site. She is a pro baseball player's wife.

Mary

www.meningiomamommas.org
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Meningiomas
« Reply #4 on: July 13, 2008, 07:16:30 am »
Hey Nicole,

FYI.... Sheryl (on this site) has just gone through 2 Meningioma treatments with her husband. The first he had surgically done... the 2nd was CK last October.  Good reference for 2 forms of treatments (ie: microsurgical and radio)........As a patient-to-patient resource, she may be of help as well. Just a thought.

Wellness wishes to your friend!
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"
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