A Compelling Story

You need to have a compelling story. That’s what we’ve been told our group (Maine Brain Aneurysm Awareness) needs in order to get some local television coverage. Webster’s dictionary’s definition of the word “compelling” is:

: very interesting
: able to capture and hold your attention
: capable of causing someone to believe or agree
: strong and forceful
: causing you to feel that you must do something

So, apparently no one feels the following examples are compelling enough to warrant at least one television or newspaper interview in the last 6 years?

  • A vivacious 32-year old died suddenly in her bathroom of a massive ruptured brain aneurysm three days after Christmas. She lived alone and was found the following morning by her devastated mother. (The KAT-Walk was created in her memory & honor)
  • The husband of a ruptured brain aneurysm survivor also lost his niece and sister-in-law to ruptured brain aneurysms.
  • A woman from New Hampshire was vacationing in Maine and suffered a ruptured brain aneurysm in Shaw’s Supermarket. After a misdiagnosis, she eventually went to Maine Medical Center where the only interventional radiologist in the state saved her life. A few years later, she also survived breast cancer and a double mastectomy.
  • A man suffered a ruptured brain aneurysm while home alone. After many hours, his young children discovered him after coming home from school. Two hospitals and a trip to Boston saved his life.
  • A 40-year ruptured brain aneurysm survivor had to be taken to Canada.  At the time of her rupture, no one in the northeast did brain surgery for aneurysms then. The original clipping failed and she was re-clipped. Which means multiple craniotomies. She is a walking miracle.
  • A much-loved 53-year old woman died of a massive ruptured brain aneurysm on Mother’s Day after presenting symptoms two previous visits to doctors, leaving a husband and a 15-year old son behind.
  • A beautiful 28-year young woman, who was an active runner and very physically fit, suffered a ruptured brain aneurysm while working out. She never recovered leaving her family devastated. She was to be married only a few short weeks after her death. (The Karo-5K was created in her memory & honor)
  • One woman survived a ruptured brain aneurysm that was filled with 11 coils, only to lose her sister to a ruptured brain aneurysm six years later. Then Dr’s discovered she also had a second brain aneurysm which was clipped via a craniotomy, but the original one that ruptured is still giving her cause for concern 9 years later.
  • A father of three survived a devastating ruptured brain aneurysm. The deficits he and his family have faced are life-altering and difficult but he IS alive and living life to the fullest.
  • A woman’s ruptured brain aneurysm at 4 a.m. left her with limbs numb, speech slurred, a rapid heart rate, sweating, and falling to her knees. The EMT’s who arrived at her home took her blood pressure and asked some questions. They determined it wasn’t a serious issue and left it to the patient if she wanted to go to the hospital or not. Thankfully she went on her own and the Dr. in the ER sensed what it could be and had her scanned and transported to Maine Med where her life was saved.
  • A young, talented, 13-year old boy fell victim to a ruptured brain aneurysm in his home. The outpouring of grief and support after his death was overwhelming. (Nolan’s H.E.R.O. Foundation)

I could go on and on if I knew I could accurately describe the situations of everyone that I have met. So many stories of hope, fear, disaster, strength, and courage.

So…apparently none of those stories are compelling? How many people have to die and suffer debilitating deficits before this cause it compelling enough to the local news media? To those whose lives have been touched by brain aneurysms there is plenty to hold one’s attention. Survivors HAVE to begin to believe they’ll be fine or they’ll crumble. And in many cases of those left behind, the desire to DO something is overwhelming after these silent killers attack without warning in some cases. Our fundraising events do more than raise money to help other families, they raise the hope and spirits of those left behind or those surviving.

We were lucky enough to have a lovely article written about Kim after her passing. It was written in the local sports section because she was a fantastic softball player, but beyond that, we have received little to no local media support focused solely on our cause. It’s not for our group’s benefit…it is to raise awareness and to allow others who have been touched by brain aneurysms to gather and support one another.

Our cause doesn’t have a specific color that we brand; doesn’t have a celebrity spokesperson that everyone adores; or a social media “challenge”. The more we’re able to talk about brain aneurysms, the more awareness will be raised and hopefully we can SAVE A LIFE.

I think that’s pretty “compelling” don’t you?

READ MORE About Us: MaineBA.org

It is estimated that up to 1 in 50 people in the U.S. will develop a brain aneurysm during their lifetime. Each year about 30,000 people will suffer a ruptured brain aneurysm. Almost half of the victims will die and of those surviving, only one third will recover without disabilities.

Checkup Scheduled

My angiogram to check on my aneurysms has been scheduled for February 18th. Of course, I’ll be nervous the day of the procedure hoping that all goes well and all looks good.

Thankfully the angiograms at Maine Med aren’t the all day events like they used to be. They have improved the tools & procedure and you no longer have to lay completely still and flat for hours and hours afterwards. There still is a significant recovery period, but nothing like it used to be.

However, I’ve had so many angiograms since 2006 that the initial puncture is quite painful due to scar tissue in those exact spots I think. I usually ask for extra meds as a result.

I have to get some labs done next week. Been there…done that!

8 Years And Counting

20141004-230625.jpgI say it every year around this time but Happy Annie-versary to me! 8 years ago today I suffered a ruptured brain aneurysm at home. I believe I was guided by God’s hand to go into the ER when I did. I KNEW it was something I had never experienced before and wanted to get it checked out because it scared me. I was only vaguely aware of the term aneurysm because a cousin had one coiled a few years earlier. I had no idea just how serious it was for her and just how my life, and my family’s life, would be changed.

No, I wasn’t sent to Boston for my surgery. My particular aneurysm was a good candidate for the relatively new procedure called coiling. What I know NOW, but didn’t know then, is that the rather large, 1/2″ diameter brain aneurysm is actually sitting on my optic nerve and the head of neurology was nervous about doing the more invasive procedure of a craniotomy and clipping (which I just went through with my un-ruptured aneurysm). Thankfully the staff right here in Maine at Maine Medical Center were more than capable of handling that procedure and are now in 2014 even MORE prepared to handle all of the new treatments available.

16 coils and four additional coils, a stent, a craniotomy, and now a metal clip, and here I still am. It was a frustrating recovery in 2006 and I am now meeting, and hopefully assisting, recent survivors at our brain aneurysm support group. We’re all lucky. We survived.

I’ve given up asking “why did I survive” and why didn’t Dave’s niece Kim or my sister Dori survive their ruptures. There is no answer. God had other plans I guess.

I mentioned to my mother earlier in the week that I had finished the first round of layouts for the ENTIRE catalog for next year’s book. Ironically, 8 years ago, I remembered celebrating that milestone and one or two days later, the brain aneurysm ruptured. I’m still working just as hard, still stressing just as much, but a little bit more tired this year because my UN-ruptured brain aneurysm was clipped in January. One of the side effects from THAT surgery is when I’m overly tired, my left eye lid gets droopy and even though it doesn’t look it, I feel like my brain and skull are swollen when I’ve worked too hard. Yes, I still push myself. It’s my job, it’s my responsibility. I do have limits though….you’d think I would have learned that 8 years ago. LOL

I still don’t eat as well as I should and I don’t get enough exercise. Perhaps that part of my brain that activates motivation has changed. Who knows, but I’m here. No special celebration today, just making home made chili in the crockpot, working on the catalog (yes, on the weekend!) and hanging out with my Maine Man and my kitty cats. That’s more than I was doing eight years ago in ICU.

If I’m able to help any other survivors and help spread the word about the symptoms and treatments of these silent killers, then I’m hopefully turning something bad into a more positive thing. There are days I don’t want to talk about brain aneurysms. There are days I don’t want to think about them, but I can’t get away from them. That’s the sad truth. So, I’m trying to make the best of it and try to help others LIVE in whatever way they’re able to. They are a part of my everyday living.

For those of you still struggling, you’re not alone and things will get better with time. Just treat yourself right, enjoy life, and celebrate the people around you. You just never know.

20141004-225151.jpg

Photo taken on my first walk outside after craniotomy in January this year.

Film At 11

I’ve seen many videos and demonstrations online showing graphics of brain aneurysm operations and medical personnel discussing procedures, treatments and causes of brain aneurysms, but the video below is by far the most educational one I’ve seen to date.

All of the doctors speak clearly and in a language the typical lay person can understand, but it’s the questions the moderator asks (some from viewers) that are probably THE most asked questions. When we’re at brain aneurysm events, many of those types of questions are asked of us. It was reassuring to know we’re speaking the same language as medical professionals.

It’s an hour long, but well worth it. The main focus of the video is coiling an un-ruptured brain aneurysm and the “what, why, and how” of that procedure, but they go into very good details on other treatments and causes of brain aneurysms. I think anyone out there who is newly diagnosed would find this very useful. It’s produced by Baptist Health hospital in South Florida and their staff members are obviously touting their own facility, which looks very good by the way, so if you’re from Florida…you’re lucky to have such a great team!

Brain Aneurysm Video

I have been through two coilings and now a clipping at Maine Medical Center from 2006, and I believe the Neuroscience Institute staff that MMC has acquired is now one of the top crews on the east coast. They’re highly skilled, diverse surgeons and interventional radiologists who can handle cases that were always sent to Boston. People should no longer question having their brain aneurysm operated on at Maine Med. We are very lucky to have this talented group of individuals and nurses helping our local community.