Tag: medical procedures

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

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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.

Perspectives

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Our group held its second brain aneurysm support meeting tonight since the start of the pandemic. Held outside, with proper spacing, and all wearing masks, we enjoyed a stunning, summer evening in Portland.

July brain aneurysm support group meeting

There are regulars who attend the meetings every month and there are those who try to attend when they can. So, we never know who is going to attend each month. Sixteen people attended tonight with two new survivors and a neuro nurse who brought a unique perspective to the group.

At last month’s meeting, our first since February, our group facilitator asked us to find something positive that has happened during the pandemic instead of trying to focus on all the negatives…because there certainly are a lot. It was a wonderful idea and gave us a chance to catch up with one another. I don’t believe the words “brain aneurysm” were even mentioned that evening. We left feeling “good” and grateful for those positives we were able to mention no matter how small they might have been.

Tonight we were asked to share something we have done this summer that has allowed us to get away from the chaos and uncertainty. We also went around the “room” and shared our brain aneurysm stories again. With new people in the group it can put them at ease to hear other’s stories, know they’re not alone, and it allows us a chance to offer advice and comfort if needed.

After 14 of us shared our relationship to brain aneurysms and added our “summer story”, we then met Elizabeth who has been a neuro nurse for over 30 years and who currently works at Maine Medical Center. It was fitting she was the last in the group to share HER story after listening to all of OUR stories.

She was not a brain aneurysm survivor and didn’t have a relative who had a brain aneurysm, but because of the field she is in, Elizabeth has seen the effects that a brain aneurysm can have on patients and their families at their most vulnerable stages: admittance to the hospital and during emergency and elective medical procedures.

What she does NOT see is how those patients fair once they leave her care and guidance in the neuro ward. So, tonight it was an eye-opening and rewarding experience for her to hear from survivors themselves, how they’re coping, how they’re surviving and thriving after their first, second, and sometime’s third experiences with brain aneurysms.

Elizabeth eloquently shared her feelings regarding our group and the survivors who shared their stories and how it gave her a new perspective and insight into healing and recovery. A perspective she never would have got had she not joined us tonight.

It also dawned on all of the survivors that, of course, a nurse who cares for these patients for a brief period during the ugliest parts of the patients experience would wonder how is that patient doing now? How is their family coping with this trauma? Did they regain their memory? Were they able to walk again? One forgets they must see patient after patient and not really get any kind of resolution or closure because THEY aren’t the ones who meet us during our followup appointments at the neurosurgeon’s office.

Elizabeth also shared that they don’t really remember the type of brain aneurysm we had, or its location, but they DO remember the family and the people around the patients and perhaps their initial struggles. She remembers the patient…not the medical condition.

What an eye opening perspective for us all to hear. We thanked HER for sharing that perspective and she thanked US for allowing her to hear our stories about our lives and healing after our initial brain aneurysm experiences. She also realized that the healing and PROGRESS can occur well after one or two years.

Many survivors are told they’ll be healed and back to “normal” in a year or two or that after two years, you got what you got. Many survivors also know this is NOT the case. You may look normal, but your brain can still be struggling with many, many different smaller deficits that, in time, WILL and can get better. But it takes time…lots of time.

I am so glad Elizabeth and the new survivors joined us tonight and shared their stories. It’s a good reminder of how fragile life is and those stories continue to inject new perspectives on SURVIVING and THRIVING with brain aneurysms.

Love & Peace