Tag: Maine Medical Center

Brain Aneurysm Survivor Button

The Thing that Won’t Go Away

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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. 🤞

Still here

Published on by heiditeaLeave a comment

It has been a minute since I last posted and I suppose that’s GOOD news. While I continue to advocated for brain aneurysm awareness whenever, and wherever I can, I am reminded again, about my own brain aneurysm issues.

I had my 2-year MRA check up on December 3rd. The initial “report” available to me online indicated some things remained unchanged, but some new things have developed on the big old original aneurysm that made its presence known in October, 2006 – fifteen years ago.

There is something that HAS changed, but the medical jargon used in the report is beyond me. So I have to wait for the follow-up appointment scheduled for January 4th before I can see the images and discuss what’s going on with my doctor. His extremely brief follow-up notes on the report indicated he wants me to have an angiogram.

I haven’t needed an angiogram since 2016, so I know they see something that needs a closer look. But once you read something like that, you can’t UNREAD it, so the mind starts to race on what exactly it is and how serious it may or may not be.

The fact I haven’t had to have a closer look in five years is certainly discerning and one doesn’t like to read a report with the words “however”, “changes”, and “has developed”. It was this sentence though “…which is highly suggestive of coil compaction and recurrent aneurysm filling…” that hit me hardest.

I’m praying it’s only a small blip and that the angiogram will show it’s nothing to be concerned about. I’ve lived with this “remnant” of blood in the neck of that aneurysm for years. I just hope I’m not doing something that is causing it to “develop”.

Now that I’ve “spoken” about it, hopefully I can forget about it over the holidays until the start of the new year.

I’ll let you all know what’s going on when I know what’s going on. Umm….but Merry Christmas! 🙂

15 Years and Counting

Published on by heiditeaLeave a comment

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.

MRA Results

Published on by heiditea

I have added some new images to my brain photography exhibition after my latest MRA last week to check my vascular health. I haven’t had one in two years, so the scan-xiety built up a little bit the day & evening before. Not that I was nervous about the MRA, I have had plenty of those (see the previous blog post!) but it’s always the results that create that uncertainty.

I was especially worried about this one because I haven’t been taking care of myself the last two years. I’m not exercising, I’m not eating right, and since my last MRA in 2018 I had developed high blood pressure. All three of those things are NOT good for maintaining good blood flow in the brain…or elsewhere for that matter. I take full responsibility…no excuses other than being lazy.

I have been reticent to sign up for all the online medical charts offered by the hospitals lately, but I decided to sign up for the one used by the state. As a result, I could view the initial findings of the MRA online on a Sunday before the doctor’s office ever called me on a Tuesday. I’m still debating whether that is a good thing to have or a bad thing. If the results have come back badly, I’m not sure how I would have handled that.

THANKFULLY, the findings were positive and my doctor’s office confirmed the diagnostic radiologist’s report with his reply and recommendations for follow-up.

Here are the main things that came from the report:

  • There is normal flow within both vertebral arteries. No other aneurysm is identified. There is normal flow within both P1 segments and in the right middle cerebral artery.
  • Stable appearance of the coil embolization and previously clipped left internal carotid artery bifurcation aneurysm. Small amount of flow is unchanged or slightly less apparent in the region of the aneurysm neck that measures between 3 and 4mm in size.

The first point is the best one, indicating no other aneurysm was found. I am at higher risk with my family history and my own history with two already.

The second point was also good news about the bloody remnant (narrow area where blood is starting to creep back into the aneurysm) at the neck of the original brain aneurysm being “unchanged” and that it may be “slightly less apparent”. We have been watching this remnant for several years now and I’m always nervous it will increase in size, or create a weak area and possibly burst.

When the doctor recommended I come back in a year for another MRA, I was surprised it’s not another two year follow-up. So, I have sent in a question asking why.

Celebration Tea

I am blessed to still be here and share my story with others. Keep on living. I am enjoying a celebratory scone with tea to celebrate!