Perspectives

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

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.

Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.