12
Nov
11

Another Supporter Gets Lucky?

I have to share this amazing post by someone who understands the importance of Getting Scanned.  Please read the below post by The Afternoon Napper, a true survivor who’s perserverence and determination hasn’t let her condition stop her from saving the lives of others.

Posted by: The Afternoon Napper

It is very strange to me when someone uses the word “survivor” to describe me. I have never considered myself as such. Instead I say to myself, “Nope, this isn’t it” and afterwards, “Well, I’m not dead yet.” Experiencing life-threatening medical illnesses and events and making it through them is just what I do. I’m stubborn that way. I’m lucky that way.

In 2009, doctors discovered I had four brain aneurysms. (How this discovery came about is a long story for another time.) Three of the four
aneurysms were repaired via coiling, a fascinating process in which tiny platinum coils are run through the vascular system into an aneurysm and deployed to create a basket type structure. The procedure means only a day or so in the hospital vs. clipping via a craniotomy, which requires a much longer stay but is the most common aneurysm treatment. Only three of my four aneurysms were treated via coiling because the fourth—at less than 1 mm—is considered too small for coiling. It is however still there, and I think about it often. So far none of my doctors have recommended that I elect for an attempt at clipping the aneurysm. I am monitored with a yearly brain scan to check for growth or changes in the aneurysm. I have mixed feelings because on one hand I would like for the aneurysm to be large enough to treat with coiling, but on the other hand I do not want my aneurysm to grow, and generally, the fewer people
rooting around in my brain the better. My good friend, Amanda, says that I
should name the aneurysm. I’ve though about calling it Fred.

My status as one who has brain aneurysms—lest that word “survivor” be used
again—has led to my involvement with the Joe Niekro Foundation. The foundation was established in 2007 to honor baseball’s Joe Niekro, who died
suddenly as the result of a ruptured brain aneurysm in 2006. The problem with
aneurysms is that they tend to be asymptomatic until they rupture. Discovery is
often incidental. The foundation’s head-turning tag line speaks to that: “Wanna
Get Lucky? Get Scanned.” Note that the “Wanna Get Lucky?” bit is the only thing on the front of the foundation’s t-shirts, a design trick that I’m sure has
drawn more than one cat call by wearers’ way. The tongue-in-cheek saying has the tremendous benefit of being memorable and hopefully—after the cat calls—has prompted more than one discussion about aneurysms among those who had not previously thought about them.
On Nov. 21, I will be traveling to Raleigh, N.C. to be a speaker at a Niekro Foundation brain aneurysm support group. The meeting will be held in
conjunction with Duke Medicine. Doctors at Duke coiled foundation secretary Janie Schaeffer’s unruptured aneurysm, which is the only reason her Carolina blue blood continues to flow. I and my fellow speaker also are Tarheels. I’m hoping the two schools’ rivalry will result in a competition over who can send more med students and doctors to the meeting in order to hear our patient and survivor stories. The meeting will be a truly rare event. I am an intimal
fibromuscular dysplasia
patient—FMD is rare, IFMD represents less than 10
percent of cases (so far I know of five cases internationally). My fellow
speaker experienced spontaneous coronary artery dissection, which up until recently was thought too rare to effectively study. We’re not zebras; we’re unicorns.
Those interested in attending the meeting are advised to contact the Niekro
Foundation via the organization’s website, Facebook, or Twitter. I’ll also be sure to more specific meeting information as it becomes available via The Afternoon Nap Society blog, Facebook, and Twitter.
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2 Responses to “Another Supporter Gets Lucky?”


  1. November 13, 2011 at 8:10 am

    Tweet me @raleighite or email me janie@joeniekrofoundation.org to rsvp. We are so fortunate to have Sarah speak us about her success in advocating for FMD. All are welcome! November 21, 2011.

  2. December 5, 2012 at 8:28 pm

    Good post. I learn something new and challenging on sites I stumbleupon on
    a daily basis. It’s always helpful to read articles from other writers and practice a little something from their web sites.


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