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.

MRA Results

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!

I Am Lit

As I get prepared for my 2-year follow-up MRA this Friday, I was curious to see just how many angiograms and MRA/MRI’s my brain has had since 2006. Thankfully, I was able to get a pretty good handle on that number by simply searching this blog. I was surprised by the number…but not really.

CEREBRAL ANGIOGRAMS

I have had NINE cerebral angiograms which include three treatments that are performed using this same process: my initial coiling, then my stent placement, and recoiling were all performed using angiography.

A Cerebral angiography provides x-ray images of blood vessels in and around the brain, showing abnormalities like brain aneurysms.

PHOTO: John Hopkins Medicine

Typically a catheter is inserted into the femoral artery in the groin and threaded through the circulatory system to the carotid artery where contrast die is injected. A series of images are taken as the contrast agent spreads through the brain’s arterial system, then a second series as it reaches the venous system.

MRA/MRI

I have also had SEVEN MRA/MRI’s. Magnetic resonance angiography–also called a magnetic resonance angiogram or MRA–is a type of MRI that looks specifically at the body’s blood vessels. Unlike an angiogram, which requires inserting a catheter into the body, magnetic resonance angiography is a far less invasive and less painful test.


PHOTO: My brain bling via MRA imaging.

The frequency and type of follow-up procedures I receive hinge on the previous scan showed and what procedure was provided. We’re hoping I can continue just getting MRA’s, but if something unusual shows up, more angiograms may be needed. Angiograms are more invasive and risky, but they are the gold standard for getting the clearest images of my blood vessels.

I am blessed to have had such a great neuro team here in Maine and terrific health insurance coverage through work.

Here’s to more scanxiety.

All The Bling

I have often referred to the hardware in my brain as my “brain bling”. It’s not a term I came up with myself, but stole from another survivor. I’ve always considered my brain bling to consist of my 20 coils, 1 stent and 1 clip. Basically, metal that is keeping me alive.

But wait, there’s more! I keep forgetting I have more metal in my head in the form of the plate and screws used to hold my bone flap in place.

The 20 coils and stent came first, then the clip via a craniotomy came after. A craniotomy is a type of surgery that removes part of the skull (a bone flap) to access the brain underneath. When the procedure is complete, neurosurgeons put the bone back in place and secure it with tiny plates and screws.

With my fingers, I can feel the plate and screws under my skin, and at certain angles and lighting they’re very visible sticking out slightly under my skin. The much more visible aspect of most people’s craniotomies is the “dent” or a skull compression that can occur.

The dent is a common occurrence due to the refitting of the bone flap. It is impossible to reattach the bone flap for a snug fit, for any number of reasons. Therefore, a space is created between the two bone surfaces and fitted as closely as possible. The bone is reattached and secured with the plates and screws to ensure very little movement and easy surgical access if it is necessary. However, the piece of bone can shift slightly and create that indentation.

They can use synthetic fillers to restore the normal contour around the dent, but I have opted not to have it. It just makes me nervous having something injected around that area. I pretty much try to cover my dent with my hair. I’m not horribly self-conscious about it (if the wind blows my hair up….THERE it is!), it’s just not that attractive. So, as long as I have bangs, why not use them to cover it up, right?

My Actual Brain/Head Bling Count:

  • 1 Titanium Plate

  • 2 Titanium Screws

  • 1 Titanium Clip

  • 1 Stent

  • 20 Platinum Coils

And no, I do not set off the x-ray machine at airports.