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.
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.
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.
I turned 62-years old on December 22nd. How did I celebrate? Well, we had a fantastic dinner in Portland, then I had an MRA next door in Scarborough. Not how everyone would want to celebrate, but it is what it is. That just happened to be the time and date they had available for the MRA, so I took it.
I wasn’t nervous regarding the MRA itself, other than remaining still during the painless, but noisy procedure, it’s always the impending results where the scanxiety comes in to play.
Usually there is a period of waiting before finding out the results, but in this case, the results were posted to the hospital’s online portal the following morning. I wasn’t expecting to see them so soon. There was good news, and potentially some bad news.
The good news is that no new brain aneurysms were detected. That IS good news because with two previous aneurysms, I am already susceptible to develop more.
The bad news may NOT be bad news, but I don’t know that yet. The wording in the report said there is “a 4 mm focus of flow related enhancement” somewhere along the coiled aneurysm. When the doctor’s office called the next day, they said Dr. Ecker said he couldn’t tell if that finding was “real or not” and it appeared he was leaning towards my having a cerebral angiogram to confirm or deny that finding.
What IS discerning about the 4 mm area of focus is that after my last scan in 2022, the older remnant area of concern where blood was getting back into the neck of my coiled aneurysm, was almost completely gone. So, this is a NEW area of concern. And if it is truly a new out-pouching of blood along the aneurysm, it certainly developed quickly.
Images from before flow-diverter stent and after (Dec. 2022)
We’re hoping to speak to the doctor via TeleHealth, so we don’t have to drive 60 miles just to spend 15 minutes with him, but we DO want to see the images and discuss it with him. I’m hoping that conversation happens sooner rather than later and an angiogram can be scheduled fairly quickly. I want to know if this is “real or not”. If it’s just a blip on the MRA scan, then great, nothing to worry about. If it IS a new remnant, the next course of action could be very complicated as there are already 20 coils and two stents trying to stop this bugger from killing me.
I will update you all when I know more. I’m trying not to be overly reactive, but it certainly is concerning news…until I learn it’s NOT concerning news. Happy birthday to me!
I shared my story (up to this point) on the MaineBA.org website if you’re new to my blog and would like the condensed version of my story.
Heidi's Brain Blog 