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! 🙂
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.
Six years after my craniotomy to clip my 2nd brain aneurysm, I discovered it can still cause me pain.
Although I still generally try to stay away from the area where my bone flap was reattached to my skull, I certainly never expected adjusting a baseball cap on my head would subject me to a stabbing pain!
Such was the case when I went to curve the bill of a relatively new baseball cap today. It was much more rigid than I was expecting and when I tried to curve it with my hand, a large chunk of it hit that dent where my bone flap sits.
The dent
One forgets, or certainly doesn’t anticipate, that area of your skull could potentially still be tender six years after that fact. Oh, I can safely it IS…at least in my case.
A dull ache in that area has remained the rest of the day and I’m sure I’ll feel it a tick as I try to sleep tonight. Laying on that side is always a little iffy. I just never expected to have that kind of pain this many years out. Maybe I’ll put some ice on it and see if that helps. It’s bad enough the bone flat recessed slightly and there is a dent now, but to still have it feeling like this is a bit discerning.
I have been de-cluttering lately. Throwing out, or donating things that I haven’t used or looked at in years. If it doesn’t hold a strong, personal attachment, why keep it? The person who will have to clean up after I’m gone, won’t know if it was meaningful or not…or even care. If it’s taking up space and there is no sentimental value…get rid of it. Quite liberating.
Today’s wee task was a small basket filled with greeting cards. I remembered they were mostly “Get Well” cards frommy craniotomy in 2014, but also forgot it was shortly after the loss of my other sister Rhonda. So, there was a mix of sympathy and get well soon cards. Odd.
Many were from co-workers, distant friends, and relatives who had heard about my surgery. Some were very poignant and meaningful and others were funny and distracting.
One such card was from my own mother. She always found THE best cards. Once card I received while recover in the hospital from my ruptured in 2006, was the perfect card for me. A painting of the sun sitting in a bath tub — one of my favorite pastimes. The writing on the outside simply said “The Sun’s Day off”. I have it framed in my office at home.
The card I stumbled across today from this surgery was so MOM. Funny, unexpected, and unique…just like she was. Even more shocking was the expletive inside. 🙂 But I LOVED it. It made me smile and laugh then, and it did so today when I reread it.
Cover (Left) and Inside (Right) card from my mom
Little did I know that just 9 months later, I would also lose my mom. So, finding these cards is very, very bittersweet, but this one made me smile and laugh out loud! I “had fun” with this card, which is what she always used to tell us. God, I miss her.
Since that time in 2014, two of my co-workers have been lost due to cancer. Both were devastating blows and they were taken far too soon. Seeing their names and words was moving especially knowing how they would both struggled with their battles against the horrible diseases that overtook their bodies. I hope I was able to give them the same kind of support and comfort they gave me.
One such card was a beautifully penned, simple note from our photographer John. My sister Rhonda has just passed away and he had read about it on my brain blog. He comes from a large, loving family and his words about pain, loss and family meant the world to me then…and still do today.
I vividly remember that day like it was yesterday. I came to work and found a small orange envelope sitting on my desk. As I opened it and read John’s words about losing my sister, they hit my like a ton of bricks. After my eyes welled up with tears, I immediately walked over to his cubicle, thanked him for the card, and we hugged, held each other, and cried together.
John was also dealing with his own demons fighting cancer. Knowing how precious the time we have on this earth is, for him to take the time and acknowledge the pain I was going through while he was enduring his own fragility being the father of two young girls, meant even more. I miss him every day at work. He was a special, special human being.
All of these cards gave me strength when I needed it and gave me strength reading them again. Grief and healing went hand-in-hand during that period of my life. Neither were easy. I struggled with proceeding with the brain surgery such a short time (2 weeks) after losing my sister. I didn’t want to put my mother and my niece through anymore worry and pain. THEY were the ones who told me to go forward with the risky surgery. And it turned out it may have saved my life.
I thank those who sent cards. No one visited me at home or in the hospital, but the cards meant a lot and made me feel less alone in the world – even for a short time. THANK YOU!
