Category: Doctor

Happy 20th ANNIE-versary

Published on by heiditea1 Comment

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. 

The black blob is my original 11mm aneurysm
Me and my late sister Dori when she visited us in Maine
Dave and his late niece Kim on our boat
Me with sister-in-law Nancy, who lost her only daughter Kim to a brain aneurysm
Me with two brain aneurysms survivors I met online, Lori and Julie
With my Maine Man, Dave at our annual walk/5k for brain aneurysm awareness

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

Published on by heiditea1 Comment

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.

Murder Mysteries & The Infundibulum

Published on by heiditea3 Comments

I had my 13th cerebral angiogram two days ago. Lucky 13? Well, it almost was! The clean bill of health would have been the doc saying “it was a glitch on the MRA, we don’t see anything there”. There IS something there, but more on that later.

Snow was forecast for not only our area, but for Portland as well, so Dave and I drove down Tuesday night to stay over and avoid driving the next morning in the snow for an hour. Thankfully, the snow only amounted to a few inches and it was out of the area before morning. I’m still glad we stayed over. It was nice not to have to get up at the butt-crack of dawn to drive the hour to get to Portland. Instead our hotel was a short 10-minute drive away from the hospital.

The angiogram was scheduled in Maine Med’s new Surgery 2 suite, which was new for us. All of my previous procedures have been done in Radiology. This new suite included a new waiting room and pre- and post-op areas.

Once we were checked in to admissions, and were taken to the new surgery in the Bean Tower area of the hospital, I was promptly prepped for the procedure by a lovely RN named Sasha. She was originally from the UK and had a wonderful British accent. Being called “my lovely” for an hour was highly relaxing. Her skills with the needle were also excellent. I hardly felt the IV and there is no bump or any bruising on the site 2 days later.

Sasha’s handy work. Two thumbs up!

Dave, as usual, took advantage of having some captive audiences at his disposal to chat about our brain aneurysm group and our (his and my) collective experience with aneurysms and the relationship with Maine Medical Center.

Although I don’t necessarily enjoy speaking about the subject at length just before going in to have a brain scan that could change my life, they are important discussions and Dave is good (or annoying depending on the nurse/doc) at striking up those conversations and engaging with anyone who is willing (and has the time) to listen on the hospital staff.

Sasha and Dave also shared a love of British murder mystery televisions shows! Once aneurysm chat ended, it quickly switched to their favorite shows and characters. It was a nice, and unexpected change of subject matter. I don’t watch them, so it was highly enjoyable for Dave to chat with someone who watches the same series.

After answering everyone’s medical questions, I was soon given some happy juice and wheeled back to the surgical suite. It appeared to me to be a smaller, but more organized room and certainly shiny and new. I slid to the table and was “prepared”. They shave your groin, place your arms in plastic guards, and give you a bit more happy juice. Since this was just a diagnostic procedure, they don’t completely knock you out and you do need to be alert enough to follow a command to hold your breath during the scan.

After the 3-D images were taken, Dr. Ecker briefly and very medically, described what his initial findings were while I was still on the table, but I wasn’t quite “with it” to remember or understand everything he said. He also went and spoke to Dave in the waiting room. Dave and I compared notes in recovery and neither of us were completely sure what the results were, but it sounded promising.

There were no issues during the angiogram and I was taken to the recovery room where nurse Dani (not sure how he spelled it…it was French) made sure both Dave and I were taken care of and he checked my incision/puncture site every 20 minutes or so.

Laying flat for 2 hours isn’t that bad and I only asked for a cup of hot tea. I wasn’t as hungry as I thought I’d be, but knew we could eat on the way home. After successfully walking a wee bit and having no issues, I was discharged to Dave’s care.

We stopped for some fast food on the drive north. We arrived at home, fed the cats, and promptly took it easy and put on all the comfy clothes while I waited for the official results to be posted on the MyChart online portal from the hospital.

Those results came out yesterday and I believe I interpreted them correctly. The great news is that the item in question is NOT a brain aneurysm. It’s actually a deformed blood vessel, or an ophthalmic infundibulum. An infundibulum usually has a funnel shape and typically isn’t associated with the same risks as aneurysms. They’re often benign and don’t require immediate treatment. I’m assuming it will probably be monitored along with my usual regular checkups for my brain aneurysms. It’s about 3mm in size.

At least that’s what I am initially reading online…which is ALWAYS correct information, right? 😉 I have a follow up appointment with the doc to discuss it on March 10th where I can ask more questions, see the images, and discuss a course of action, if one is even needed.

I also saw the great news on my report that the artery has healed over the flow diverter that was placed in 2022. Mission accomplished on that end!

I feel better after reading the results report and pray this is just another lovely part of my funky vascular system that I have to live with and learn how to pronounce correctly.

As usual, my care at MaineHealth Maine Medical Center was top-notch. Everyone from the surgeons, the PA’s, the nurses, the staff who assist with getting people from one floor to the next, do it with professionalism and care. I cannot recommend them enough.

Dr. Ecker has been my doctor since 2010. Dr. Florman assisted with my craniotomy in 2014, and I see several of the great PA’s in this video.

The Follow Up to the Follow Up

Published on by heiditea1 Comment

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.