Category: Rupture

Happy 10th Annie-versary to Me!

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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

Life. Support. Music.

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At last month’s brain aneurysm support group, we watched a documentary about a musician from New York City who, against all odds, survived a ruptured AVM. Through the amazing support group around him including family and friends, he was able to not only recover, but prove most of the doctors wrong with their devastating diagnosis’.  Watch a brief follow-up online about the documentary with Jason and his sister HERE.

Tonight, we were able to meet Jason Crigler in person, hear his story first hand, and ask him questions. There truly aren’t enough descriptive adjectives to convey what one feels after hearing and seeing Jason’s story.

In 2005, soon after he returned home from a year-long stay in the hospital, Jason's family (his daughter, wife and father) take him for a walk in the woods.

He is a soft-spoken, warm, and funny man. If you didn’t know his story, one would never know the extent of the struggles he and his young family have had to endure.

Jason’s story was documented by a friend who video taped much of his early recovery and made it into a critically-acclaimed documentary called LIFE. SUPPORT. MUSIC. It’s painful to watch, especially as a survivor of a brain injury myself. He could be me…I could be him. The uphill battles are all very similar, but Jason was very motivate to recover with a new-born baby girl, a budding music career in New York City and a family that sacrificed their own lives and comfort to care for him on an hourly basis.

Tonight was very special and it’s a damn shame more people (even from our own groups) could not attend this widely publicized event. The old adage, you can lead a horse to water but you can’t make him drink, held true tonight I guess. You get what you give…and some people give more than they have to give, but receive very little in return. It’s a damn shame.

Jason’s story is a story that needs to be heard and obsorbed. I only wish I could speak as eloquently and effectively as Jason does, or I’d take my little stent, coil & clip show on the road too. But who the hell would show up to listen to me? Probably only just a few. I know my story isn’t nearly as compelling. We can’t even get an article written about our group.

There was one article written a couple of years ago. About a woman who only came to our meetings maybe two times. She was certainly very attractive & photogenic and lived in an influential area, so that right there was two up on me. Even the one small TV spot we DID have ended up being shared by a completely un-related disease, so we couldn’t even get a full 2-minute spot for ourselves. Really? What DO we have to do????

But…even if we did…would it make any difference? We met a few new people tonight and we welcomed them with open arms as we always do. I hope we see them again and that they spread the word about our group and our efforts to raise brain aneurysm awareness in the state. Exposure could save lives….WE could save lives.

I think you’d be hard pressed to find a group like ours (or at least that one special person) that gives such personal attention to those who have reached out to us. I don’t think the president of many organizations would send personalized emails complete with moving letters and related photos to someone who writes and donates and expressed great regret they’ll be unable to attend this year’s event after having attended all of the other previous ones. I think it’s the personal touch that sets us apart from other groups. The behind-the-scenes workings are amazing and the hard work that goes into every event, every email, every newsletter, and meeting follow up, is more than most are doing. Does it matter?

People need to DO more. They are not and it could mean lives of people are being lost as a result. Picking up food for an event will feed the volunteers and participants. For one day out of YOUR life, you could help an event run smoothly and make it a success, meaning those who attended and those who heard about it and read our materials will remember what the event was about and LEARN….and potentially save a life of the next person who has the “worst headache of my life”.

(stepping down off my soap-box now)……back to Jason Crigler.

Jason’s positive & simple attitude about his AVM and recovery is truly inspirational. Many things he spoke about tonight touched me deeply and certainly would have touched a lot more people if they had taken the long hour and a half out of their busy lives.

One thing he said was that there is “strength & power in thought”. We can choose to think we’re failing or think we’re succeeding and it can truly effect the rest of your body. He admits to bad days and depression and despair just like the rest of us, but it’s reminding yourself of the struggles you HAVE overcome and how far you have come that one needs to be reminded of. We all have struggles on a day-to-day basis, but it’s how you deal with, and think about them, that can lead you to a path of strength and power.

I needed to hear those words tonight. My 10-year Annie-versary of my ruptured brain aneurysm is coming up on Oct. 4th. I’m lucky to be here. I know that. I also know others haven’t been so lucky and if sharing my story can save one life, I’m going to do it. If complaining about a lack of support can garner a little bit more, then I’m going to do it.

My sister died from a ruptured brain aneurysm. I had to see her lying in a hospital bed completely unresponsive on a ventilator, with her head shaved, with wires in her open skull and a drain relieving blood from her brain. She was basically gone at that point but we held out hope for a miracle. It never came. I may have failed saving my own sister in educating her enough on the signs and symptoms, but I MAY be able to save one other person. I MAY be able to help one person recognize the symptoms and get them to a hospital in time.

I have to hold on to that…otherwise, why was I saved and Dori wasn’t and why was I saved and Dave’s beautiful 32-year old niece Kim wasn’t? Two beautiful, sweet, funny souls who did nothing but good for others. I’m not nearly as beautiful or sweet, so I have funny going for me…and a chance to DO something in this world and get the word out and share my story.

I may not have friends who care enough about me to film a  documentary, come to our events and support me, tour the country and make money from it, but I DO know I am blessed to be here still.

THANK YOU Jason, for sharing your story, answering our questions, and driving all the way up to Portland to meet with us. And thank you for making people aware of the struggles people with brain injuries can endure…and more importantly, can overcome. You’re a true inspiration!

 

The Good, The Bad, and The Tired

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Tonight was my first time back to our brain aneurysm support group meeting since probably last September, possibly August. During catalog season I’m always working late and far too tired to go anywhere during the week. Ironically, fatigue and memory is a common theme at many of our meetings as it was tonight.

As always, it was good to see returning faces and I missed a few who weren’t there. We’re getting a nice “core” of survivors, care-givers, and those who have lost loved ones. The support is always there and we all try to listen to each other’s stories and offer validation for feelings and emotions that only those who have gone through the same thing can appreciate.

Unfortunately, I’ve had the brain aneurysm double-whammy; I myself, have suffered a ruptured brain aneurysm, and I have lost two loved ones to ruptures. I’ve seen both sides of the caregiving aspect, or those left behind, and I’ve also been a part of the survival and recovery part. Each part has struggles and pain.

Tonight, a father shared the story of the night his adult son’s brain aneurysm ruptured. It was a violent rupture and if he had been home alone, he would not have survived. His wife was able to revive him briefly – twice. He survived surgeries and a little bit of rehab and multiple rounds of different medications. He was at our meeting tonight while his father described the night it all happened to us. Even though his short-term memory has basically been lost, he cannot work or drive, and his family continues to endure a level of frustration and pain I cannot even begin to understand for several years now. But he IS alive, walking, talking, and able to function in some capacity.

Hearing a caregiver, and a father, talk about what happened that night, was difficult for me. My sister and Dave’s niece went through very similar experiences….or we can assume. My mind immediately raced to Dori’s rupture and how she lost consciousness on Mother’s Day and her husband was able to revive her while their 15-year old son called 911. But by that point it was too late. The damage from the rupture had already been done.

Then I thought about Kim, who was home alone when her rupture occurred. I can only hope and pray it was quick, but I also always wonder if someone had been there and found her sooner, if she’d be here today and if she were, what kind of life would she be living. The severity of her rupture and the location of it, leads me to believe Kim would not be the same person if she had survived. The same can be said for Dori.

We witnessed tonight the amazement in seeing a survivor of such a devastating rupture, but also the heart-wrenching pain in knowing their loved one will never be the same. That they can no long take care of themselves or their children. That they need major supervision. That they need to be reminded of things on an hourly basis to get through the day…yes, they DID survive, but in a sad way, they’re only a shell of the person they once were.

Is it only by the grace of God, that I am here today? Why did I survive and they did not? Why did I survive with very few deficits when others have continued issues and pain, even years after their ruptures?

I don’t like it when I come away from one of our meetings with these kind of questions. I should just be grateful and keep my mouth shut and never complain about anything, ever again. I AM one of the lucky ones…or one of the chosen ones…or just a person who was in the right place at the right time, with the right set of doctors. Fate? I don’t know.

I suppose those are all questions that will have to remain unanswered. Kind of like “Why doesn’t Fred Flinstone have horribly bloody feet when he has to stop his rock car with his heels?” Why? Why?

October, Shocktober

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October has always been a bitter-sweet month for me and my family.

The Sweet:

  • my nephew Ian was born (he’s now a handsome 19-year old!)
  • my step-nephew Adam was born
  • my sister Dori was born

The Bitter:

  • my Dad was diagnosed with cancer in October (lost him in 1994 – 6-months after diagnosis)
  • my Mom passed away in October last year (2014)
  • my brother-in-law Fred was killed in October
  • I suffered a ruptured brain aneurysm in October in 2006.

And I’m sure I’m leaving something out, but those are the biggies. I think that’s enough, don’t you?

October 25th is a bitter-sweet day for me as well. It was Dori’s birthday, but it was also the day I was released from the hospital after a three week stay nine years ago next week. I remember speaking to Dori on the phone after I got home and she told me my coming home was the best birthday present I could have given her. We were both crying.

How awful that six year’s later, I was crying in a London hotel room after findiing out Dori had suffered a ruptured brain aneurysm too and I never got a chance to say good-bye and let her know how much I loved, and adored her.

Brain aneurysms simply suck. They take the lives of young, old, healthy, joyful people, and devestate the lives of those they love. Granted, they don’t always kill, but they certainly can cause distruption and change the lives of all those around you forever.

October is also a stressful month for me at work. With my rupture happening in the critical last weeks of catalog production, it was left to our small crew and a poor graphic artist brought in to pick up the pieces to finish the book. They did the best they could. Three months later I returned to work part-time to find my office with calendar’s still set on October and reminders on my computer for jobs that needed to be completed…in October. A surreal experience for sure.

I am one of the lucky ones who #1, worked at a great company that allowed me the time to heal and recover and #2, I was physically able to perform my job full time after a 6-month recovery period. Soooo many are not so fortunate and the needs of survivors and their issues after a rupture are so varied, it’s difficult for employers and co-workers to truly understand the depth of recovery needed.

I suppose that’s one of the reasons I speak out about brian aneurysms and try to educate others. Although this blog as been theraputic for me personally, I have received a few comments from other survivors and those who have lost loved ones who tell me it has helped. That means more to me than any amount of money I could raise. Support is what we all need. I have survived a rupture, a coiling, a re-coiling and a stent, then a craniotomy on a 2nd un-ruptured brain aneurysm. And that first large brain aneurysm is STILL giving me issues. Look for updates on more potential “brain bling” in the New Year!

Every October I remember the day of my rupture. Every October I remember my mother’s death now. I remember my father’s diagnosis with cancer and I remember my sister’s birthday on October 25th. I still hate October, but I’m here. For whatever reason, I. AM. HERE.