Happy 20th ANNIE-versary

I am a little surprised it has been twenty years since I heard the words “you have a brain aneurysm” in the ER at Augusta’s Maine General Hospital. Wow, how time has flown by. And yet, I remember it like it was yesterday.

I suppose it’s lucky I DO remember. I remember feeling that awful sudden headache that everyone talks about. I didn’t know what it was though. It was so sudden and odd. It wasn’t a migraine, which I had suffered from since 1976. At 4:30 in the morning, right after I got up to use the bathroom. When I put my head back down on the pillow, it hit. BAM! That’s exactly the moment it happened. I’m one of the “lucky” ones that I remember that morning. Many don’t.

I thought I was having a heart attack because my heart rate was skyrocketing and I was starting to sweat profusely. Not being able to walk right was also a concern, but I still felt it was my heart.

It wasn’t until I woke my then boyfriend, now my husband, that I realized it was something very different and something I had never experienced before. Both arms going numb while he was calling 911 was something new.

I have learned over the last 20 years that not everyone experiences that sudden headache. The majority do, but it’s not a given. Brain aneurysms don’t care. They can burst whether you’re rich or poor, black or white, republican or democrat, or young or old. 

The last twenty years have taught me that every walk of life can be affected by this silent killer and that is why we work so hard to share my story, and others, with the general public. Don’t ignore that strange headache. Don’t ignore that disturbance in your eyes. Don’t ignore that dizziness you have experienced for days. Go to the doctor. Insist on an MRA. Get answers. 

As I mark my 20th year of surviving a ruptured brain aneurysm, I am grateful for many, many things. 

I am grateful for:

  • The ER doctor in Augusta, Maine who was walking out after the end of his shift at 5am as we were walking in and walked us to the CT scan that showed my rupture.
  • The intervention radiologist who cut his vacation short at Maine Medical Center to come in and perform the coiling procedure that saved my life the following day. (16 coils)
  • My sister Dori, who flew in to Maine from New York to be by my side and to comfort my husband. Sadly, in 2012, she succumbed to a ruptured brain aneurysm herself. 
  • My boyfriend, now husband, who didn’t know about brain aneurysms, but educated himself immediately, and sadly had to bury his 32-year old neice Kim two years later from a ruptured brain aneurysm.
  • My current doctor at Maine Medical Center, for picking up the messy pieces from 2006 and working his hardest to keep me alive and kicking with additional coils and two stents.

I was one of the lucky ones to survive without major deficits. I have also been fortunate to meet so many incredible survivors the last twenty years who have inspired and encouraged me. I have also met with the families and loved ones of those who have lost someone to brain aneurysms. Sadly, we share the same grief and sadness of losing a loved one to this sudden, cruel disease. 

I continue to share my story in the hopes it gives hope to those who have are currently suffering or have been diagnosed, but I also share the grief with those who have lost a love one.

I am bless to still be here. 

Everything Old is New Again

So…it turns out my new infundibulum is actually an old infundibulum and has been around since at least 2022, possibly before then. It IS visible in my 2022 angiogram images and it’s mentioned in the report, which I didn’t check out until we got home. It wasn’t really discussed then that I can remember. At that time, we were mainly concerned about the flow diverter and if it had stopped the blood from gathering at the neck of my original brain aneurysm — which it has. 

Dr. Ecker explains this particular infundibulum is not threatening, it’s stable, and we will continue to watch it over the years. It is filled with blood, but we’re not sure why it showed up as a NEW artifact on the MRA. That’s the whole reason I then had the angiogram: to pinpoint what that artifact was.

My 2026 angiogram image. Unable to see the stent and the flow diverter in this image.

I was able to grab a screen capture of the latest angiogram images in the doctor’s office. Really fascinating to see the large 11mm original aneurysm filled with coils showing as a large gray mass. Then to see how close the clip actually is to the first aneurysm. As Dr. Ecker said, neurologically speaking “it’s in another room.” due to the microscopic aspect of their work. He also pointed out where the infundibulum is. It looks big to me, but it’s only around 3.7mm.

Pointing out Thing One, Thing Two, and now Thing Three. At least Thing Three isn’t an aneurysm.

So, the good news is that’s it’s nothing new, but it’s there. Am I happy something is there? No. Not really. Just one more thing to monitor. The plan now is to do a follow-up MRA in two years. 

Now that I have learned how to pronounce infundibulum, I hope that’s all I have to be concerned with.

Milestones & Passings

Although today is the 18th Annie-versary of my ruptured brain aneurysm, celebrations of life are happening all around me.

Our small family was again reminded of the fragility of life and the overwhelming sadness and shock of a sudden death.

Three weeks ago my sister-in-law Nancy passed away suddenly after a short stay at a memory care facility at the age of 79. She ate breakfast, slumped over at the table and was gone within minutes. It was either a massive stroke that deprived oxygen to her brain, a massive ruptured brain aneurysm that flooded her brain with blood, or a heart issue. We don’t know. And at this point, it doesn’t really matter. Our family of three is now a family of two.

An early Thanksgiving dinner out in Freeport with Nancy

Then, during that same week, my niece’s father-in-law passed away due to complications from a fall. He had been battling several illnesses, but the suddenness of his injuries and the difficult decision his family had to make was all too real for our family…again. I was sadly reminded of the death of my sister Dori to a ruptured brain aneurysm in 2012. She was kept alive for a short time, but we knew her survival was not to be.

What should have been a care-free September this year for me to enjoy my first true autumn in Maine after 22 years of stressful workloads this time of year, suddenly turned into sorting through photos for a memorial, packing up clothing and items to either sell, keep, or throw out, and the sad task of making funeral and cemetery tasks.

September was still a busy month with our annual KAT-Walk & Karo-5k and Dave and I were planning on including remarks to honor and remember the co-founder of our organization, Artie, who passed away earlier in the year. Those plans were almost finalized when we lost Nancy just 7 days before the event. The KAT-Walk was named for her daughter Kim, who passed away from a rupture brain aneurysm.

Now we had to remember and recognize Nancy as well. It was a bittersweet day and we appreciated the kind remarks and memories people shared with us during the day. Nancy’s battle with dementia had started to take a stronger hold earlier in the year but she was looking forward to attending this year’s event. I think Dave and I were still a bit numb as we made all the announcements and tried to bring cheer and hope to the hundreds in attendance.

Kim, Nancy, and a bearded Dave

I struggle with how I should live my life now that I am retired. I’m eating more and moving less than when I worked, which makes no sense. I always complained I never had the time or energy to exercise when I worked 50 hours a week. Well, what’s my excuse now? I have all the time in the world, but none of the desire. It’s also terribly unhealthy. I’m not a great cook and my desire to be one is even less. So we’re not eating well either. Again…not terribly healthy.

So am I basically slowly killing us? With my track record of brain aneurysms and vascular health, I SHOULD be eating healthy, not drinking, and exercising regularly. I KNOW I should be. And with Dave being 10 years older than me, I should be even more motivated to cook better for BOTH of us and to exercise for when he slows down so I can step up and assist more.

Or do we just continue to eat crap and sit around and slowly fade away and wait to get some disease or illness that forces us to make medical decisions? Certainly the events of this past year make me look at all of that and our time left here on earth. I see other, older people living life to the fullest with activities and friends surrounding them. They don’t look their ages and don’t act it. I SHOULD be celebrating my survival of two brain aneurysms and I don’t know why I’m just not feeling it this year. Could be all the death and dementia stuff, right?

Life truly is short and as one gets older, posting pretty tea photos on social media for a few people to admire just isn’t as motivating for me anymore. Who really cares? I have a few followers and a few friends and family members who look, but beyond that, I’m not reaching the “outside” world in any fashion. And again…who cares in the grand scheme of things? When I’m gone and someone goes through the photos of the 2nd half of my life, it’s not filled with fantastic trips with friends to exciting places…it’s filled with photos of my tea-for-one out on the deck and cat photos. LOL Is that a life well-lived? I’m still figuring all that out. I better get my ass in gear and do it though before my ass is too big to do anything.

Me and my ass at the KAT-Walk. What’s with the socks?

Another quiet milestone happened back in January this year for the 10th clip-aversary of my 2nd brain aneurysm. It was clipped in 2014, just a couple of weeks after the sudden (there’s that word again) death of my oldest sister Rhonda. I’m proud I made the decision to have the craniotomy and relieved and happy I did it even though it was a difficult time. But what have I done with my life lately that makes me a better person? And why should it matter? Is there some rule that says if you survive something you HAVE to run a 5k to matter?

Dave and I are still going to get out this weekend and enjoy some leaf peeping in this beautiful state, but we’re doing it all with a sad undertone. I’m hoping the fresh air, nature, and beautiful fall colors bring us a sense of peace and comfort. We both need it.

Happy Annie-versary to me.

See You in Three Years

I first met Dr. Ecker on December 3rd, 2010. In all that time and the different medical procedures we have been through, I don’t believe I have ever hugged him. Yesterday I broke that patient/doctor barrier and gave him a very warm, tight embrace.

Twelve years ago, he picked up my aneurysm story where Dr. Kwan left off four years prior. Aneurysm #1 ruptured in 2006 and is the problem child. Even after 16 initial coils, blood was getting back into the aneurysm. Dr. Ecker has been trying to improve the situation and produce favorable results with several attempts. Two stents and 4 more coils later, we might be at a turning point in our professional relationship with this pesky bugger.

As noted in my previous post, I was thrilled and emotional to hear how well the flow-diverting stent deployed back in April was doing. I certainly was relieved, but until I saw the images and spoke to him in his office after he had a chance to review everything again, I still wasn’t celebrating to the point of calling it “done”.

Seeing the images yesterday was remarkable! The areas where blood was previously getting into the neck of the aneurysm had almost disappeared and the artery where the flow-diverting stent was placed inside the older stent had conformed to the shape of the artery. This is EXACTLY what the hope was. Success!

Because this particular procedure, placing a stent inside another stent, is not a common practice, Dr. Ecker felt a follow-up MRA in three years would be best and I agree. Although we’re all thrilled to see how it’s taking shape after 7 months, giving it sufficient time for healing was recommended. THEN if it continues to look good, we’ll look at it every five years.

Below are a few photos I took of my images on the doctor’s computer screen. They aren’t the best, but I tried to indicate where things are for my readers. The two images placed side-by-side were backwards on his screen showing the AFTER image first, then the BEFORE image after it, so I had to cut them apart, flip them and I tried to keep them around the same size for scale. Hopefully, you’ll get the idea. And yes, I DO know I should have added another “m” for the size of my aneurysm. Don’t @ me. It took me a long time to get these images right and I’m too tired and busy to change them. 🙂

Raw image comparing the aneurysm and artery prior to flow diverter deployment and after
Indicating the location and size (approx. 1/2” in diameter) of the aneurysm, which is currently filled with 20 coils (not visible).
LEFT: Showing the area of blood that has been developing over a period of years into an aneurysm already susceptible to rupture. RIGHT: Now showing a reduction in size of the bloody area and a clearly defined artery.
RIGHT: Showing the relative location of the flow diverter placed within the older stent in the artery.