Tag: brain aneurysm awareness

3-Year Checkup Results…Sort Of

Published on by heiditeaLeave a comment

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.

MY STORY

License to Advertise

Published on by heiditeaLeave a comment

I’ve had a “Brain Aneurysm Survivor” bumper sticker on my cars for many, many years. I find it can drum up conversations with people on occasion. The same thing with my survivor button on my purse. I forget it’s there and some random person will see it and tell me about their survival, or a family member or friend who survived, or sadly did not.

This year I had some new ones made with our URL (MaineBA.org) on it. I’m not happy with the colors on it, but it’ll do. This past weekend I went grocery shopping with said new bumper sticker on my car. As I pulled into my spot, another white car was backing in the spot immediately next to me. A little too close, so he pulled up and re-backed the car in, which I was thankful for.

As I waited to him to park and exit his vehicle, I gathered up my purse and shopping bags. After he got out, I started to open my door and noticed in my side-view mirror that he was taking a photo of the back of my car before he continued on. My first thought was “Uh, oh!” that I cut him off in traffic or something and he was recording my license plate number, then I realized he had the camera pointed down on the bumper and was taking a photo of my bumper sticker. At least that was my assumption.

My bumper sticker

Because he had a little boy with him and seemed in a hurry to get into the store, I never caught up with him again in the store because groceries is still an “adventure” for me, and by the time I got out back to my car, his car had left. So, I’ll never know. 

HOWEVER, I hope it was someone local. I hope they went to our website and found the information they were looking for, for themselves or a loved one and found it useful and comforting. THAT is why I “advertise” that I am a brain aneurysm survivor on my car and my purse. You just never know who it may attract and the conversations it can fuel and help. 

The Big Picture

Published on by heiditea1 Comment

Yesterday, Dave and I spent the afternoon at the Brain Injury Resource Fair in Augusta, Maine. This annual event, sponsored by the Brain Injury Association of America – Maine chapter, was the first held since the pandemic. Our brain aneurysm group had a table along with many, many vendors from different areas of Maine and New England.

The program director of the Maine chapter of the BIAA is headed by Sarah Gaffney who is a spark plug of encouragement and energy. As usual, she and her team did an amazing job with this event. Sarah’s advocacy is motivating and impressive. I was honored when she asked me to tell my story in their November 2020 newsletter.

Dave and I had to shake off some of the cobwebs while setting up our many banners and table-top displays as it has been so long since we have attended any indoor events like this. It felt good!

We might be a small group, but our presence was mighty! 🙂

It was wonderful to see so many familiar faces in person and reconnect with some of the many, many people whose daily focus is to assist the brain injury community here in Maine.

These events are always a challenge for me, mainly because I’m better with faces, but horrible with names. Dave, on the other hand, has a great memory and all of his faculties when it comes to matching names to faces. I didn’t see much of him during the 3-hour event because he was busy catching up and networking with other vendors around the large arena at the armory. This is one of THE best events in the state for doing that.

We got reacquainted with our table displays again.

As the general public started to arrive, you’re quickly reminded why we were all there: to offer much needed education, outreach, information, and resources to those who desperately need it.

I do relatively well when people ask questions regarding brain aneurysms, but when a question is thrown my way that I wasn’t expecting and haven’t had to answer before, I can often struggle. I feel bad I may not give the answer the person was looking for, but I try my best. Dave is much better at that than I am. When I get tired, I can also start to fumble with my words. But I think I’m among friends here who are more forgiving.

Every type of brain injury is represented at this event and every type of service can be found, but knowing where to look is one of the biggest problems, especially in such a rural state like Maine.

Since the pandemic, our brain aneurysm support group has only been held virtually, via ZOOM. So it was wonderful to meet two newer members of our support group in person today for the first time as well as meeting one of our previous speakers in person. I’m very proud of our small group. I KNOW we’re doing good work and today only validated that. If we can help one person feel better, find resources, or navigate a challenge, it’s all worth it.

The general public and other vendors appreciated the brochures.

The term “brain injury” encompasses a wide range of issues from mild concussions to debilitating damage from severe trauma, stroke or tumors. The struggles survivors endure can be very similar, but every story, every injury is different and requires different needs. Witnessing the strength and daily commitment of survivors and their caregivings is an inspiration. It’s not easy. It’s frustrating, scary, and complex. Knowing where to go for support and care can improve the daily lives of not only the person who is struggling, but for their families. Events like todays are so important and we were thrilled to be a part of it.

I created this short reel some time ago to highlight some of those struggles survivors deal with.

See You in Three Years

Published on by heiditea3 Comments

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.