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.
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.
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.
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.
Heidi's Brain Blog 