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.
Five years ago I wrote, what I contend, is one of my more poignant blog posts about all of THE STORIES I have heard about brain aneurysms. Stories from many different people from all walks of life and at very random times. We heard a new one last week.
As my husband and I were in the pre-op area at the hospital waiting for his colonoscopy to begin, the anesthesiologist came in to speak to Dave prior to the procedure, which is normal. As Ron was talking he noticed the brain aneurysm survivor pin that was on my purse and Dave’s KAT-WALK bracelet and asked who was the survivor.
We proceeded to share my story, which was top of mind for both of us because it was 16 years to that day, that I had suffered my ruptured brain aneurysm. Then sadly, Ron told us HIS story about losing his wife to a ruptured brain aneurysm 12 years ago.
Suddenly Dave and I were no longer patients Ron needed to tend to during his daily routine prior to the procedure, but human beings who had both suffered losses due to this horrible disease. Ron leaned over and rested his elbows on the metal railing of the hospital bed and proceeded to tell us the sad story of his wife, his children’s reactions, the day it happened, the treatments involved at the time, and the tragic outcome.
Obviously, for Daveand I, we could relate to Ron’s pain and the suddenness of losing someone to a rupture brain aneurysm. Ron even mentioned meeting someone else who survived and how that person had survivor’s guilt. I too, have suffered from that.
Dave wears his KAT-Walk hat and bracelet almost daily and I always have my survivor pin on my purse. These pieces of “swag” can result in moving stories of sadness and triumph from complete strangers. Stories we never would have known had they not seen the small trinkets and asked about them.
Five years ago I wrote that blog post because of the anniversary of my sister’s death. This year was the 10th anniversary of her death. 16 years ago last week, I celebrated my annie-versary of my rupture. That is MY story, but there are so many others out there and we continue to realize the importance of sharing them.
Ron congratulated me for surviving multiple times and said I “looked great’, which was very sweet considering he had never met me before and had just shared, what I am sure, was not an easy story to tell. We shared our sympathies with him and thanked him for taking the time to tell us about his wife.
All of these stories are meaningful. All of these stories effect us. And all of these stories get added to the long list of people we have met over the years who have been effected by brain aneurysms.
15 years ago today my first brain aneurysm ruptured. The previous day, I had just finished the initial layout for the entire catalog. What a huge relief to finally know it would all fit after a stressful five months. I still had a great deal of work to do yet on the catalog, but my brain had other ideas on that chilly October morning.
I am still around today for several reasons:
My bleed didn’t kill me instantly
I listened to my own body and had Dave take me to the ER
The quick work of the attending physician at Maine General who immediately sent me in for a CT scan where the blood on my brain was detected
The high-speed and safe driving of the EMT ambulance squad who got me to Maine Medical Center in record time
The skilled hands and eyes of Dr. Eddie Kwan who performed the endovascular coiling on my 1/2” brain aneurysm the next morning
The compassionate, and hard-working nursing staff at Maine Med who attended to me for 21 days
The many prayers from my family and friends
My Maine man, whose constant care and attention gave me the strength to get up each morning
Dave, my rock, my constant companion for over 20 years. I am so fortunate that I was discovered on AOL by this GOOD MAN in 1998. Not only am I amazed, blessed, and thankful by the care he provided ME while in the hospital and in recovery, but also by the time and attention he pays to other survivors we have met over the years. The world, and MY world, is a better place because of you, Dave. THANK YOU!
Brain aneurysms don’t discriminate and my story isn’t unique. There are thousands of people just like me around the world. Brain aneurysms don’t care how old you are. They don’t care what race, gender, political leanings, or financial situation you are in. A ruptured brain aneurysm can happen to anyone.
Although I started sharing my story on https://heidisbrainblog.com as a way to keep my family and friends updated on my recovery, it became a therapy of sorts to fight my way back, relearn the computer, hand-eye coordination, and connect with others going through the same thing.
It was wonderful to discover I was not alone and others were going through very similar struggles. I’m so thankful to the other survivors I have met over the years. Each of their stories have touched me and given me strength.
I am not a glorious survivor. I haven’t run marathons to prove my incredible physical strength, or started podcasts proclaiming a new-found energy and awareness for life. I haven’t shown the world my face on tons of YouTube videos (okay, I have a couple out there) or written a book, but I am surviving every day….and I think that’s pretty damn good.
We spent the day yesterday down in the beautiful coastal town of Wells in the southern Maine attending a fundraising event for a Well’s resident who suffered a ruptured brain aneurysm in March.
Due to Covid19, our MBAA group have not attending any of our usual brain conferences, fairs, and support events since March of 2020. So, we were looking forward to pitching our tent once again. And hugging! There was hugging!
About two weeks ago, I saw a news report on TV about fundraising efforts benefiting Bob Hoffman, who along with his wife, and another couple, own and run the Living Wells Farm, a horseback riding and boarding center. Bob suffered a serious brain aneurysm rupture in March and continues to heal with rehabilitation therapy at home.
Once we saw Bob’s story, we wanted to make sure he and his family were being looked after and had all the information and medical assistance they needed during this critical recovery period. The #BobStrong Fundraiser offered the opportunity to introduce ourselves and offer our help in anyway.
A small segment of the #bobstrong team
We contacted Katie from CrossOver Fitness Maine who, along with her husband Andre, were organizing the event for Bob at their fitness center in Wells. Thankfully, there was a quick response which also led to Bob and his wife attending a timely brain aneurysm support group meeting with us over Zoom this past week.
A cookout, bike-a-thon (31 miles!), and indoor cycling/rowing all took place
It’s so important for survivors and their caregivers to know they’re not alone during these critical periods of after-care and healing. We were really please when Bob and Amanda showed up on our computer screens for the support group.
Everyone is different. Every aneurysm is different. And everyone responds to a ruptured brain aneurysm differently. Some are receptive to help, others can walk out of the hospital on their own and never look back or look into what may have caused the aneurysm and how it has effected their brain and their families. You can lead a horse to water, but you can’t make him drink. You can lead a survivor/caregiver to a support group, but you can’t make them share their story or be open to receiving assistance and education.
Thankfully, Bob and Amanda were receptive to our group and were engaged and open with us. We were also highly impressed with the path to recovery Bob is currently on and the services he has been offered through some very tenacious efforts by Amanda and their rehabilitation center, Rehab Without Walls.
Yesterday’s fundraiser was a beautiful example of a community coming out to support one of their own and how they have wrapped their arms around this young family in their time of need. We met Bob’s parents and children and some of the good friends helping the family on their brain aneurysm journey. I am reminded, yet again, how the physical brain aneurysm happens to one person, but the entire family suffers the results as they are often confused and scared by all they have seen.
Knowledge is power. The more you know.
Our group tries to assist survivors and families in understanding the recovery period and what one can expect. We NEVER give them a timeline on when their recovery will be complete. No one can tell you that. But, if you put in the time and educate yourself on how best to help the survivor, it can make that journey easier and perhaps quicker to achieve better results.
#BobStrong t-shirts and some amazing cookies made by local bakery Mainely Cookies
Dave and I were joined by two of our committee members, Amy and Linda for the day and we were impressed by the over 200 people who participated throughout the day and brought such a loving and caring attitude. We were asked many questions and met a few people who had also been touched by brain aneurysms in their own families.
Linda, Dave, Heidi, Amy, and new survivor, Bob
Bob is a very fit and strong individual. Both of those traits should benefit him greatly during recovery, but it’s not a quick process. Reading my own blog from my first few months is a quick reminder of how frustrated and depressed I got. Having that strong support group around you is a huge benefit and I think Bob is one very lucky man after what I experienced yesterday.
Spending the day with Linda and Amy also allowed us some catch-up time and the chat was mostly about our experiences with brain aneurysms and our combined efforts in the state to educate people. I have something in common with both of them: Amy is also a survivor and Linda lost two loved ones to brain aneurysms – both of her parents. It’s interesting how easy it is to discuss these difficult topics when you know the person you’re speaking with has also endured similar difficult experiences.
Linda, Dave, and Amy
It felt GOOD to be out there doing GOOD again. It felt GOOD to load up the car, pitch that tent, lend a helping hand where we could, and hug people again.
Heidi's Brain Blog 