This is old girl is enjoying some quality time with the other old girl. Nice to be back home in my own bed. I don’t quite have the energy to write a full blog post yet. Maybe tonight. #blessed
Category: Brain Aneurysm
More Brain Bling?
This morning we met with my doctor to discuss the results of my angiogram, his findings, his recommendations, and the next course of action.
FINDINGS:
- In comparing the most recent angiogram with the angiogram from 2016, there are “significant changes” in the bloody remnant in the neck of the aneurysm.
- This finding gave my doctor “anxiety that it is at risk” of rupturing in the future again.
RECOMMENDATIONS:
- Place a flow diverter inside my existing stent to prevent more blood from getting into the neck of the aneurysm.
- They may insert and expand a balloon first to push back any “tines” from the original stent to allow the new flow diverter to be positioned better.
- The Surpass flow diverter is a more flexible stent that should adhere better to my “ugly” and “challenging” arterial structure around the aneurysm.
- It’s an endovascular procedure, so not open head surgery.
- Bringing in an additional doctor with knowledge of this procedure and flow diverter to assist if need be.
MY DECISION:
- To go ahead with this procedure here at Maine Med.
- Will be put on blood thinners (Plavix and full-strength aspirin) the week prior to procedure then remain on both for 6-months after.
- Procedure could be as early as March.
There is a good video about administering the Surpass flow diverter on this page, although it doesn’t show it being deployed inside another diverter: Surpass Flow Diverter
I was surprised to read on my blog that I’ve been dealing with the stress of this darn remnant for 11 years now. When the re-coil and stent didn’t do the job, the next course of action would be the stent within a stent. If THIS doesn’t work, there is a possibility we could sacrifice that entire section of artery, but I’m counting on it working so let’s not even go there.
Making this decision with Dave by my side gave me a sense of relief. Relief in knowing I’m doing something about it and there is a plan of action. I have great faith in my doctor and his familiarity with my case, my brain, and this particular brain aneurysm for the past 11 years. I know he wouldn’t make a recommendation unless he felt there was a good chance of success. And so far, he hasn’t been wrong.
The Thing that Won’t Go Away
The follow-up with my interventional radiologist/neurosurgeon confirmed the MRA I had in December showed additional development of more blood getting into the neck of my first brain aneurysm – AGAIN. We went through these discussions back in 2015 when that remnant first showed up. I decided to kick the can and watch, wait, and continue to monitor it. After five years, it appears there is more blood now.
The doctor wants me to have another angiogram to get a closer look and determine if we need to take action now. This is not the way I had hoped to start the new year. It may be nothing alarming…or it might be.
I created the graphic below to present, in it’s simplest form, what’s happening. This is the first aneurysm that ruptured in 2006. It’s 11mm or about 1/2” in diameter.
- There were 16 coils inserted into the aneurysm in 2006.
- Those coils healed and clotted, preventing blood from getting back into the aneurysm.
- Five years later, the coils either started to compact, the shape of the aneurysm and neck of the aneurysm changed, or a combination of both occurred, This allowed some blood to get back into the neck of the aneurysm.
- 4 more coils were inserted (for a total of 20) and a stent was placed across the bottom of the neck in the artery in 2011.
- In 2015, during annual checkups, it was discovered more blood was starting to get back into the aneurysm again.
- We decided to “wait and watch” the remnant of blood for future development.
- Now in 2022, we’re discussing the fact that it appears MORE blood is getting into the aneurysm after six years of stability. This is also a brain aneurysm that has already ruptured once.
During the last 15 years, I have had to endure a couple of “watch and wait” periods for both my aneurysms. There is always a nagging worry that lays there asking those probing questions: Is it growing? Has there been any change? Am I making it worse? Could something I’m doing make it rupture? Is that headache a sign that something is wrong?
Anyone who is living with brain aneurysms knows that worry. Telling me to “Not worry about it” is far easier said than done.
The good news is that I feel fine. I just hope I can stay that way. 🤞
15 Years and Counting
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.
15 years…and counting! Happy annie-versary to me.
Heidi's Brain Blog 