Saturday, November 12, 2011

Wanna Get Lucky?

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.


4 comments:

  1. I suggest naming her Annie. Since clearly your aneurysm is like a bad female roommate. A bitch you have to live with!

    Good luck with your speech.

    ReplyDelete
  2. Want to get Lucky?
    Sure You bet!
    I"m struck by two very important important points after reading this ink.
    1. Collaboration with others not only gives us a sense of support it's just plain smart.
    2. Want to get lucky~ The importance of Names/Phrases can be over emphasized! If it's just a tag "naughty" this is even better. When we remember where to go we are even more likely to get there.

    Cheers

    ReplyDelete
  3. Crap,
    I meant to say The importance of Names/Phrases CAN'T be over emphasized!
    Kntspel sometimes shows a little kntdogrammer.

    ReplyDelete
  4. I had 2 craniotomies done last year to clip 3 of 5 aneurysms. The second surgery, the doctor was able to tackle 2 because they were like Mickey Mouse ears off the main artery. I can totally understand knowing you still have another bomb in your head and who knows where else. The proposition is frightening. I would have never been diagnosed in the fist place if my first husband hadn't went with me to my GP. I thank God for him! It also didn't hurt that he had his Deputy Sheriff uniform on ��

    But my doctor treated me like a whiny female and kept changing BP meds. I insisted she send me to a kidney specialist. That's when I was diagnosed....2005. To this day, I am grateful to my former husband and miss him dearly.

    ReplyDelete

"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha