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. 

Coming up to the 20th

I am a little over half way to my fundraising goal for this year’s KAT-Walk & Karo-5k! Thank you to those who have donated already, I truly appreciate you taking the time and generously helping to raise money for brain aneurysm awareness.

I’ll be walking the KAT-Walk for the 18th time if anyone wants to physically join me for the walk in Portland, Maine on Sunday, September 20th. LEARN MORE

I will also be marking my upcoming 20th annie-versary of the rupture of my first aneurysm. I am blessed to still be here and so glad our small organization is able to help the brain aneurysm community in Maine.

Thank you so much for your support!

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.

The Follow Up to the Follow Up

I forgot to send out an update from my follow-up appointment with my neurosurgeon regarding the December MRA results.

Last week, I met with him in his office in Scarborough. We reviewed the images, and he pointed out a spot that he’s unsure about whether it’s real or not. After a short discussion, I decided to have a cerebral angiogram to get a closer look and determine definitively if it’s something real. 

So, I’m currently in the delightful “wait mode” while a referral is being sent to the insurance company. Once they approve the request for service, I can schedule the actual procedure. I’m starting to lose track of how many angiograms I’ve had, but it’s definitely in the teens.

“Keep your face always toward the sunshine – and shadows will fall behind you.” 
—Walt Whitman

Watch this terrific 10-minute video showing a live cerebral angiogram performed in the UK.