15 Years and Counting

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.

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.

All The Bling

I have often referred to the hardware in my brain as my “brain bling”. It’s not a term I came up with myself, but stole from another survivor. I’ve always considered my brain bling to consist of my 20 coils, 1 stent and 1 clip. Basically, metal that is keeping me alive.

But wait, there’s more! I keep forgetting I have more metal in my head in the form of the plate and screws used to hold my bone flap in place.

The 20 coils and stent came first, then the clip via a craniotomy came after. A craniotomy is a type of surgery that removes part of the skull (a bone flap) to access the brain underneath. When the procedure is complete, neurosurgeons put the bone back in place and secure it with tiny plates and screws.

With my fingers, I can feel the plate and screws under my skin, and at certain angles and lighting they’re very visible sticking out slightly under my skin. The much more visible aspect of most people’s craniotomies is the “dent” or a skull compression that can occur.

The dent is a common occurrence due to the refitting of the bone flap. It is impossible to reattach the bone flap for a snug fit, for any number of reasons. Therefore, a space is created between the two bone surfaces and fitted as closely as possible. The bone is reattached and secured with the plates and screws to ensure very little movement and easy surgical access if it is necessary. However, the piece of bone can shift slightly and create that indentation.

They can use synthetic fillers to restore the normal contour around the dent, but I have opted not to have it. It just makes me nervous having something injected around that area. I pretty much try to cover my dent with my hair. I’m not horribly self-conscious about it (if the wind blows my hair up….THERE it is!), it’s just not that attractive. So, as long as I have bangs, why not use them to cover it up, right?

My Actual Brain/Head Bling Count:

  • 1 Titanium Plate

  • 2 Titanium Screws

  • 1 Titanium Clip

  • 1 Stent

  • 20 Platinum Coils

And no, I do not set off the x-ray machine at airports.

Happy 10th Annie-versary to Me!

Brain Aneurysm Survivor
My story in bullet points.

10 years ago today, my life changed when an 11mm (almost 1/2″ in size) brain aneurysm ruptured around 4:30 in the morning. Happy 10th Annie-versary to Me! That’s what brain aneurysm survivors call the anniversary of the day they found out they had a brain aneurysm, the day they had their surgery, or the day it ruptured. Each year a survivor is alive is a celebration and one that should be marked in some fashion. After losing my sister and my husband’s niece to sudden ruptured, and undetected brain aneurysms, I know all too well the horrific, and sudden toll this silent killer can take on families.

Last week I was lucky enough to take part in a brain aneurysm survivor’s breakfast in New York City leading up to the Cerebral Affair Gala that same night. Both events were hosted by two of the biggest players in the brain aneurysm awareness community: The Lisa Colagrossi Foundation and The Joe Niekro Foundation. As with our support group in Portland each month, the stories survivors tell are remarkable, heartbreaking, and inspiring all at the same time. Everyone’s story is different. Everyone’s brain aneurysm is different. And everyone’s struggle is different. However, we all share the same fears and anxiety that come with surviving. Why did I survive when countless other’s did not? Is the headache I have right now a symptom of another rupture? If I had one aneurysm, is it a certainty I’ll get another one?

Fellow Survivors & their Family Members
Some of the survivors & their family members who attended the survivors round-table and breakfast.

The survivor’s breakfast was a profound reminder of just how important it is that survivors tell their stories again and again to everyone and anyone who will listen. You never now when YOUR story will resonate with one person and one life could be saved.

I HAD heard the terms “brain aneurysm” prior to my rupture in 2006, but I had no idea it could be hereditary in some cases and I had no idea the damage it could do. I vaguely remember the ER doctor coming in and asking me if anyone in my family has a brain aneurysm. I THINK I may have said “yes” because my cousin Debbie had just gone through coiling a few years prior and I know my cousin Tim had suffered a rupture.

When the doctor said I had a ruptured brain aneurysm that was bleeding, I remember thinking “Well, that can’t be good.” I’m one of the lucky ones to even have any knowledge and memory of those events and discussions. For many, the damage with the initial rupture is too great to overcome. I am still able to work the job I left for six months to recover back in 2006. I am still able to drive. Many are not.

My deficits are embarrassingly minor compared to others. Fatigue lasted a LONG time. Maybe years. I was lucky enough to NOT have major headaches for long periods of time after my rupture but bending over at certain angles still causes discomfort. I can’t say it’s pain, but it isn’t pleasant. And coughing still causes discomfort and my brain can get easily over stimulated with visual or vocal clutter.

Because my rupture was coiled, I didn’t have any outward indication of surviving a brain injury unlike the craniotomy I endured in 2014 for a second un-ruptured brain aneurysm. I think that’s why people can assume you’re fine. Outwardly, you DO look fine, but inwardly, we are suffering and struggling and only another survivor can understand that.

The 2nd brain aneurysm I had was clipped and after my last angiogram, it appears to have completely gone away. The first one that ruptured 10 years ago this morning, is STILL giving me issues. The 16 platinum coils inserted into it started to compact after five years, then four more coils were added and a stent was inserted to allow the blood to flow PAST the aneurysm instead of into it. However, there is still a little remnant of blood between the neck and the stent. It’s the annie that won’t go away.

This is my BrainSome days I still struggle with the not knowing. I truly hate the “watch and wait” option. Been there, still doing that. But this bugger is not an “easy fix” at this point. If it starts to enlarge or change shape, more coils could be in order. Sure, why not! Let’s load me up with more metal. 20 coils, a stent, and a clip. My Brain Bling!

As I was reminded during the survivor’s breakfast last week in NYC, I need to remember how blessed I am and that I should continue to be grateful. I AM grateful and I know I am blessed, but I have also been devastated by brain aneurysms in losing my sister, leaving a 15-year old son behind. I’m devastated by Dave’s niece Kim dying at the far-too young age of 32 and being found by her mother. No one should have to endure that and it broke my heart.

If my long, often soap-boxy blog can help just one person and educate anyone about brain aneurysms, then I am doing something right. I am doing something positive and I am doing SOMETHING to help shed light on the deadly consequences of ignoring symptoms that could kill you or a loved one.

I suppose God left ME here to be one of the voices for those who aren’t with us anymore. It is my honor to do so.

Me! Brain Aneurysm Survivor

Thank you to all of those people who supported me during that time I was in the hospital 10 years ago and the following months of initial recovery. I couldn’t have done any of it without my Maine man, however. He’s my rock, my chauffeur, my nurse, my sounding board, and my love. I am blessed to have had him in my life 10 years ago to help save me.

Learn about brain aneurysms and spread the word! Symptoms of a Brain Aneurysm