Author Topic: "I May Look OK, but I'm not"  (Read 2695 times)

mandy721

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"I May Look OK, but I'm not"
« on: July 08, 2011, 07:44:15 pm »
This article appears in the American Brain Tumor Association spring newsletter.  Ken read it and said it sounded just like the issues he is dealing with.  It  brings up many important and, often, overlooked points for those dealing with the "invisible" effects of brain surgery.

http://www.abta.org/sitefiles/pdflibrary/HeadlineNews16pgr_SS11-F.pdf
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

leapyrtwins

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Re: "I May Look OK, but I'm not"
« Reply #1 on: July 09, 2011, 02:06:51 pm »
Excellent article.

Thanks for posting it,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: "I May Look OK, but I'm not"
« Reply #2 on: July 09, 2011, 03:12:18 pm »
Mandy ~

Superb article that is so accurate and educational that I wish it had been published by the ANA.  However, alerting us to it and providing a link here on the ANA discussion forums is the next best thing.  I appreciate your diligence.  Well done.

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.

MNTim

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Re: "I May Look OK, but I'm not"
« Reply #3 on: July 09, 2011, 07:16:17 pm »
Mandy,

Thanks for sharing.  After I had an emergency procedure to relieve hydrocephulus the first thing I wanted to know was whether the tumor was benign.  When I heard it was benign I thought I should be like the pre-diagnosis me. It took me over a year to figure out life had changed, benign or malignant.

The post diangnosis support is severly lacking for our group.

Thank God for this forum.

Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

ombrerose4

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Re: "I May Look OK, but I'm not"
« Reply #4 on: July 09, 2011, 11:13:13 pm »
Mandy,

What a great article! The ANA should be doing some research on this too. This article shows understanding of the many issues that us AN patients go through.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

 


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