Head Over Heels

A fellow brain aneurysm survivor posted on Facebook tonight that she had fallen and hit her head pretty hard. After a CT scan, she was given the “all clear”, but I know it must have been scary. She has been through multiple procedures and suffered a stroke.

This week I celebrated my 9th Annie-versary: nine years ago I suffered a ruptured brain aneurysm. The 11mm (almost 1/2 inch in diameter) aneurysm I didn’t know was growing inside my brain suddenly ruptured. The annie-versary day went by with little fan fare. My husband made me dinner, which is always a special treat, but beyond that, because I’m always so busy at work, I didn’t do much to celebrate.

The first couple of years, I would take the day off and have a spa day. I think I need to start doing that again…regardless of how stressful & busy things are at work this time of year…which it always is. They’re lucky to still have me.

Falling and hitting my head is probably my biggest fear. I hate it when I get to work late and have to park up on the very steep hill parking lot. I always fear falling down and make sure I grasp and have a good hold on the PVC pipe railing along the “side walk” up and down the hill. The railing is always covered with snow or ice too, so not sure how much of a help that is.

I probably didn’t share this with many people, but on our last night in Scotland in 2013, our tour guide dropped us off at a hotel near the Edinburgh airport. Dave and I enjoyed a lovely dinner in the hotel restaurant, then I REALLY wanted to take a long soak in a tub and there was a deep, soaking tub in our room at the hotel. As I was getting out, I misjudged the height of the tub to the floor and slipped on the tile floor as I got out, BARELY missing hitting my head on the tub and landing on my backside pretty hard.

Dave immediately ran in from the other room. I was laying on the floor with my head pretty much laying up against the tub. Once we both realized I was okay, we both shook in fear. It was a scary moment and one I hope never to repeat. And that was before I had my craniotomy on my 2nd brain aneurysm.

I suppose the fear is that a hit on the head could produce some sort of shock on the aneurysms and force them to bleed. Or that the surgical work that has already been done…could become “undone”. I’m not even sure how realistic that fear is. I supposed I should ask on my next visit with my neurosurgeon. Because I’m susceptible to aneurysms and bleeding, I would think any hard hit could be a risk. So, I’m very glad Lori got a CT scan after she fell and hit her head. I’d do the same thing.

I didn’t hit my head when my first brain aneurysm ruptured in 2006. No warning, no symptoms, that I recall. But I know that brain hemorrhages can occur when hitting your head. The tragic death of Natasha Richardson is a sad example of that.

So, nine years ago this week, I was in the ICU at Maine Med, then moved to the 608 Neuro-ward. I was in the hospital for two weeks then had six months of recovery before going back to work full-time. Only one person from work visited me and it was simply because she was in the area. I’m so glad Lori has such a wonderful group of friends to support her. I’m sure this fall scared her very much. I know her daughter and husband keep a close eye on her and I’m sure THEY were just as scared as she was. Her service dog Tober will make sure she’s okay. What a great dog he is. Love him.

I’m a NASCAR fan, and the race at Charlotte, NC is this weekend. I remember watching that race in ICU with Dave and my sister Dori (who died of a ruptured brain aneurysm in 2012). They were impressed I knew the drivers and was so responsive. I was one of the lucky ones. Some times I wonder WHY I was one of the lucky ones when so many beautiful, vibrant people who had children to live for aren’t here anymore. It just doesn’t make sense some times. Survivor’s guilt? You bet cha. I’m not a mother and I think I’m a very selfish person, so I’m not sure why God chose ME to live over all of the other beautiful, strong individuals who have lost their lives and devastated their families over ruptured brain aneurysms. It just doesn’t make sense to me some times.

So, yes…I walk slower in snowy & icy conditions. I drive slower in snowy & icy conditions. I don’t ride a bike anymore because of the fear of falling off and hitting my head. I don’t do any strenuous physical sports anymore…not that I ever did before. Falling and hitting my head can happen at any time…even slipping on some of the acorns in the driveway, which is like walking on marbles, gives me pause. I bought this fear up at a support group meeting, but I was on the only one who addressed it. I’m sure other’s have that fear. I’m so glad Lori is okay after her fall. Aneurysms survivors have another added fear. Goody….but I’m still here.

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!

Celebrating My Brain Bling – Year 1

Sung to the tune of “The Twelve Days of Christmas” starting with the 4th day….

“On the 17th of January my neurosurgeon gave to me:

  • 53 dissolving sutures
  • several plates and screws
  • one titanium clip
  • and a dent in the side of my head.”

Yep…that’s what happened a year ago today when I had my 2nd brain aneurysm surgically clipped. It hadn’t ruptured, which was a far different situation from my other aneurysm rupturing in 2006. This second aneurysm, although a riskier procedure, was more of a preventative. Because I’m susceptible to ruptures, lost my sister Dori to a ruptured brain aneurysm that was about the same size, and this second one was starting to grow, everyone felt it was in my best interested to go ahead with the procedure. Get the darn thing before it got me.

Now, don’t get me wrong…the decision was not an easy one and one I didn’t take lightly. Not only did I know the risks going in, but I also knew how the decision and any possible bad outcome would effect my family. That being said, once I DID make the decision, it was “LET’S DO THIS!”. I wanted it done sooner, rather than later, but my work schedule prevented a quicker date with the surgeons.

Having a doctor who you have confidence in and who has been inside your brain before was a huge plus. He didn’t force me to have the surgery. I could have waited if I wanted to, but I think we both knew my specific risk factors were significant enough to have the surgery. I already have 20 coils and one stent in the other brain aneurysm – what’s one more tiny clip and a few pins and screws?

I won’t go through the minutia of the surgery again as it has already been well documented in this blog, but I’m doing well. I still have issues with fatigue, my scalp feeling numb and odd aches and pains on my skull from time to time when I got overly tired or for other reasons I have yet to determine. Open brain surgery is very scary and certainly risky. I’m one of the lucky ones. Even with the dent and bumps in my head, the alternative is worse for everyone in my life.

Me! Brain Aneurysm Survivor
I have a “Brain Aneurysm Survivor” sweatshirt that I wear occasionally. Some people might find that self-promotion a little tacky. If a breast cancer survivor walked by me with a shirt saying ‘Breast Cancer Survivor”, I’d give them a thumbs up, perhaps a hug, and certainly congratulate them. I don’t EXPECT any response when I wear my sweatshirt, but it’s something I’m proud of and if it initiates a conversation with someone who may not have a lot of knowledge of brain aneurysms, perhaps I can even save a darn life.

So, on today’s 1st anniversary of my newly acquired brain bling, I don’t know what to call it. My previous anniversaries I have call my “annie-versary”. Annie for aneurysm…get it? But what does one call the clipping anniversary. A clip-aversary? A craniot-iversary? A bling-aversary? I guess I’ll just called it “a year out” and wear my “Brain Aneurysm Survivor” sweatshirt to work.