Realities & Fears

FYI: These posts are half typed and half using the terrific keyboard dictation feature.

One thing I’ve realized in the last 15+ years of hospital stays with my brain aneurysms, is that a hospital gown, or Johnny as they are referred to, is the great equalizer.

When wearing the gown, no one knows how rich or poor you are, your political leanings, the internal trauma you have endured, and for how long. It’s the costume of reality in a hospital. The Johnny doesn’t care.

The richest most powerful woman in your state is essentially just another patient like the young man who washes dishes at a restaurant laying next to her. The opening at the back of a Johnny not only displays our backsides, but also exposes our extreme vulnerabilities while staying in the hospital.

Any modicum of modesty is thrown out the window as one relinquishes personal “duties” to the nurse working your room at the moment. God bless them ALL!

There was a woman and her teenage daughter in the waiting area for admissions when Dave and I arrive. The older woman had MS and her daughter had cerebral palsy. They both required assistance walking and the daughter had communication issues.

Having one person with a disability in the family can be challenging enough, but I had tremendous amount of respect and empathy for this woman and her daughter dealing with daily struggles to live a “normal” life. And the mom was upbeat, chatty, and smart.

Observing this woman and her daughter maneuver the hallway and communicate with the hospital staff was a swift dose of potential realities for the brain procedure I was about to undergo in a few short hours.

Although I had a tremendous amount of confidence in the staff and doctors here at Maine Med, it IS still the brain and there is aways some potential for something unexpected to happen.

With the only other exception being the heart, if something goes wrong during a procedure in the brain, it can effect the rest of your life in a dramatic way. Just what we needed to see before heading up to pre-op.

My fears dissipated after speaking to my doctor before the procedure and I was ready to get this over. I knew whatever came from it, that Dave and I could handle it.

But I’m still not a fan of the Johnny, however.

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. 🤞

Still here

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! 🙂

Lending a Hand

We spent the day yesterday down in the beautiful coastal town of Wells in the southern Maine attending a fundraising event for a Well’s resident who suffered a ruptured brain aneurysm in March.

Due to Covid19, our MBAA group have not attending any of our usual brain conferences, fairs, and support events since March of 2020. So, we were looking forward to pitching our tent once again. And hugging! There was hugging!

About two weeks ago, I saw a news report on TV about fundraising efforts benefiting Bob Hoffman, who along with his wife, and another couple, own and run the Living Wells Farm, a horseback riding and boarding center. Bob suffered a serious brain aneurysm rupture in March and continues to heal with rehabilitation therapy at home.

Once we saw Bob’s story, we wanted to make sure he and his family were being looked after and had all the information and medical assistance they needed during this critical recovery period. The #BobStrong Fundraiser offered the opportunity to introduce ourselves and offer our help in anyway.

A small segment of the #bobstrong team

We contacted Katie from CrossOver Fitness Maine who, along with her husband Andre, were organizing the event for Bob at their fitness center in Wells. Thankfully, there was a quick response which also led to Bob and his wife attending a timely brain aneurysm support group meeting with us over Zoom this past week.

It’s so important for survivors and their caregivers to know they’re not alone during these critical periods of after-care and healing. We were really please when Bob and Amanda showed up on our computer screens for the support group.

Everyone is different. Every aneurysm is different. And everyone responds to a ruptured brain aneurysm differently. Some are receptive to help, others can walk out of the hospital on their own and never look back or look into what may have caused the aneurysm and how it has effected their brain and their families. You can lead a horse to water, but you can’t make him drink. You can lead a survivor/caregiver to a support group, but you can’t make them share their story or be open to receiving assistance and education.

Thankfully, Bob and Amanda were receptive to our group and were engaged and open with us. We were also highly impressed with the path to recovery Bob is currently on and the services he has been offered through some very tenacious efforts by Amanda and their rehabilitation center, Rehab Without Walls.

Yesterday’s fundraiser was a beautiful example of a community coming out to support one of their own and how they have wrapped their arms around this young family in their time of need. We met Bob’s parents and children and some of the good friends helping the family on their brain aneurysm journey. I am reminded, yet again, how the physical brain aneurysm happens to one person, but the entire family suffers the results as they are often confused and scared by all they have seen.

Our group tries to assist survivors and families in understanding the recovery period and what one can expect. We NEVER give them a timeline on when their recovery will be complete. No one can tell you that. But, if you put in the time and educate yourself on how best to help the survivor, it can make that journey easier and perhaps quicker to achieve better results.

Dave and I were joined by two of our committee members, Amy and Linda for the day and we were impressed by the over 200 people who participated throughout the day and brought such a loving and caring attitude. We were asked many questions and met a few people who had also been touched by brain aneurysms in their own families.

Linda, Dave, Heidi, Amy, and new survivor, Bob

Bob is a very fit and strong individual. Both of those traits should benefit him greatly during recovery, but it’s not a quick process. Reading my own blog from my first few months is a quick reminder of how frustrated and depressed I got. Having that strong support group around you is a huge benefit and I think Bob is one very lucky man after what I experienced yesterday.

Spending the day with Linda and Amy also allowed us some catch-up time and the chat was mostly about our experiences with brain aneurysms and our combined efforts in the state to educate people. I have something in common with both of them: Amy is also a survivor and Linda lost two loved ones to brain aneurysms – both of her parents. It’s interesting how easy it is to discuss these difficult topics when you know the person you’re speaking with has also endured similar difficult experiences.

Linda, Dave, and Amy

It felt GOOD to be out there doing GOOD again. It felt GOOD to load up the car, pitch that tent, lend a helping hand where we could, and hug people again.

#bobstrong