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.

Home Sweet Home

This is old girl is enjoying some quality time with the other old girl. Nice to be back home in my own bed. I don’t quite have the energy to write a full blog post yet. Maybe tonight. #blessed

Date Set

I finally have my date for the flow diverter deployment. Unfortunately for me, it’s not until April 6th. So, I have an entire month to think about it. Goody. Been there, done that.

I am grateful to finally have the date though. Now I can start planning around that date for work and home life and get prepared. One of the benefits of an elective procedure is planning….if I were to wait, the potential of an unexpected emergency situation is much greater.

Let the Plavix and full Aspirin regime commence.

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. 🤞