Category: Coiling

The Next Chapter

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Yesterday was my 12th cerebral angiogram in 16 years. That’s a lot of images, a lot of stress, many procedures, successes, and even failures. Brain aneurysms don’t care what else is going on your life…they show up whether it’s snowing or not.

It was snow that greeted Dave and I yesterday morning as we were up before the sun rose to hit the road to Portland, a 60 mile drive south. Thankfully, we drove out of the snow about a quarter of the way there as a driving rain greeted us at the door of Maine Medical Center.

When multiple members of the hospital staff remember you from previous visits over the years, that should never be a good thing, but it is what it is in my case. I supposed it’s a comfort to see familiar faces who know my story.

Down in radiology, I was prepped for the procedure, hooked up to an IV, and answered everyone’s questions. Dr. Ecker came in to greet me and indicated he was excited to see how the flow diverter he deployed back in April was doing. Well…yes, I was too! He even opened up the images from the procedure on the computer in the prep area to view them with me and Jack, the PA, who has assisted Dr. Ecker with several of my other angiograms. Again…they know me here.

The procedure itself went very well. No issues and no pain or major discomfort. I was a good girl and didn’t move this time as some lovely classical music accompanied the staff in the endovascular suite.

While still on the table and hooked up to everything, Dr. Ecker said that things looked great, then he said “What Eddie Kwan started 16 years ago, ends today!”. Dr. Eddie Kwan was the doctor who performed the original coiling on my ruptured brain aneurysm in 2006 with 16 coils.

“What Eddie Kwan started 16 years ago, ends today!”

Dr. Robert Ecker

At first, hearing those words brought tremendous relief and joy, then I saw the last 16 years flash before my eyes in a rapid succession of images…the fear when it ruptured, the loss of my husbands niece, the loss of my sister…my second brain aneurysm, the clipping, the recoiling, the stents…all of it in a millisecond of memories and feelings indelibly etched into my heart, brain, and soul.

20 coils, 1 clip, 1 stent, and 1 flow diverter

After that wonderful declaration by the doctor, a few more images were taken to get a good look at everything else then the doctors left and went to speak with Dave in the waiting room. While the rest of the staff were busily performing their post-procedure routines and unhooking things and cleaning me up, the tears started to unexpectedly flow.

My arms were still hooked up to things and down at my side within the arm guards, so one of the nurses touchingly came and dabbed the tears away from my eyes and face with a tissue for me. They were very comforting, in what was quite a personal and emotional moment for me, and I’m very thankful.

Dave was very surprised and concerned to see tears in my eyes when he joined me in the post-op area about an hour and a half from last seeing me. I assured him they were tears of joy, but he also knew why it was emotional for me because he has been with me through it all.

I was glad to learn what I heard from Dr. Ecker in the radiology suite matched up with what he told Dave seeing how I was a little drugged at the time. The flow diverter (pipeline) did it’s job. It adhered nicely inside the old stent and had paused the flow of blood from getting back into the neck of the aneurysm. He said it was “Done” and I wouldn’t need to go back for five years and it would just be the less invasive MRA scan next time.

The images that were taken yesterday will need to be closely looked at again just to make sure there isn’t anything else we should be concerned about, but during the doctor’s first look on the table, things looked good and it was a great report. I’ll have another follow-up in his office in December.

I pray this is a start of a new chapter in my life where I don’t have to worry about this damn aneurysm anymore. The rest is up to me…live life better and take better care of myself. I am lucky to be here at all.

I am so grateful, thankful, and blessed for the improved medical advancements in treating brain aneurysms and the skilled hands of Dr. Ecker and his stellar care over the last 10+ years. He knows what I’ve been through.

Two Fun Side Notes: Stephanie, my nurse in the pre & post care area is a Buffalo Bills fan and shared photos of her dogs dressed in Bills attire. What are the odds that two Bills fan, in Patriots country, run into each other in the hospital? Then I ran into Sara, our former brain aneurysm support group facilitator on our way out of the hospital. It was great to see her face. Again…they know me here. 🙂

More Brain Bling?

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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.

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. 🤞

15 Years and Counting

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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.