This morning my super model brain aneurysm posed for another photo. If I have many more MRIs/MRAs, I’ll stick to the fridge.
The reason for today’s photo shoot was to get a good baseline MRA shot of my large aneurysm and hopefully I can just continue to have MRAs instead of the more invasive cerebral angiograms in the future until they’re needed.
Thankfully, the Dr’s office was able to schedule the MRA on the same day as my follow up appointment for my angiogram that I had earlier in the month. So we headed out early to get to Scarborough by 8:15 a.m.
And it figures, today of all days, I get an ocular migraine right at 8 and had trouble seeing out of my right eye walking into the facility and in the MRA suite. It cleared up actually during the MRA and I could see fine afterwards. Thankfully they don’t cause me pain, just visual disturbance for about 30 minutes and I typically just don’t feel great the rest of the day.
At the Dr’s office we looked at the images of the aneurysm from my angiogram as well as this morning’s MRA, which did show that remnant area where blood is getting back into the neck of the aneurysm. It appears to be below the coils and above the stent. We also looked at previous images and compared any changes to the size and shape for the little bugger.
Since the size and shape it basically the same since last year’s scans, the Dr. is recommending we wait and have an MRA again in two years and if it changes, we’ll add more coils. MORE coils. There are currently 20 pumped into it. Perhaps I really SHOULD call this aneurysm a super model….maybe it’s like continuing to get more Botox.
I’m not sure what results I was expecting from this appointment, but the watching and waiting to get more coils made me disappointed. I was hoping for something more permanent so I didn’t have to worry about this damn thing anymore. If 16 coils, then an additional 4 coils, then a stent weren’t able to stop the blood from getting into it, aren’t more coils also at risk of not working either?
I am struggling on trying to find the positive side of this determination. I DID agree to it but I’m the one who has to walk around with this unstable thing in my brain. I trust my doctor and I know if he felt it was an issue, he’d recommend the coiling NOW, but he doesn’t feel it’s a problem and currently, there are no other permanent procedures that would take care of my wonky arteries. Perhaps in two years something new will come out that CAN be placed inside a stent. Or the remnant will rupture…..see what I did there? I’m normally very positive, but this one is tough. It’ll come, just not tonight.
The good news was that the aneurysm that was clipped in 2014 looks “stunning”! LOL He is just so darned happy with himself for that picture-perfect clipping and I’m glad I was the lucky recipient of it. There! I found something positive.
On the anniversary of my ruptured brain aneurysm in 2006 and subsequent coiling, I call it my “Annie-versary” stealing the phrase from other survivors from the Brain Talk Community online who helped me through my recovery. For some reason I feel I need to give my 2nd brain aneurysm procedure (the clipping) a different annual name. Like I’ll be criticized for calling that an Annie-versary too? LOL I doubt it, but I do.
Saturday is the two-year anniversary of the clipping on my second, unruptured brain aneurysm. It turned out to be a delicate aneurysm and it was a delicate time. I had lost my other sister just a few weeks prior to my scheduled surgery and I was wrestling with whether I should go through with the surgery or not. It wasn’t until my niece and mother (who we lost last year) spoke to me and encouraged me to proceed, that I made the final decision to keep the date and proceed. I truly didn’t want to put them through anymore.
I think some angels were watching over me because it was a good thing I DID get the craniotomy & clipping. It was an ugly, thin-walled brain aneurysm that would have surely caused me issues, if not caused my death, at some point down the road.
For my two-year update I’ll recall an earlier format I used to update my family and a few friends on my blog about my recovery process.
FATIGUE:There are still days I KNOW my brain had too much stimulation. It’s difficult to describe other than my brain is tired. I suppose that is something that will never go away. It does get better, but I’ll be able to realize when I need to rest my brain. Not just sleep, but do nothing…think about nothing…just nothing. I need those days still. I also notice my left eye lid will get a bit droopy when I’m overly tired and haven’t eaten much.
PAIN: These days, the only pain I feel that is associated directly to the clipping is on the left side of my skull. I have no idea what triggers the pain and I often have difficulty laying on the left side of my head. It “feels” like my brain shifts to the left against my skull and there is pressure there. It’s not a daily pain, but I certainly notice it when it is bothering me and I have to roll over and lay on the right side. Sneezing doesn’t bother me, but coughing really does. I feel it throughout my head and it makes me tired.
NUMBNESS: As many people said, including the Dr., this may or may not go away. The skin on my skull hasn’t completely “reconnected” all of the nerves, so a great chunk of it is still numb. I only notice it when others touch my head now. My hair dresser or Dave. At least it’s not painful….just odd. I certainly could have worse issues, so I consider myself lucky.
STITCHES/INCISION: I can feel the incision under my hair line and the hair has all grown back so that part isn’t even visible anymore. As the swelling went down and I lost a little bit of weight (20 lbs at one point), the bone flap area “settled” into the skull quite a bit and a dent has appeared. The pins and small plates that secured the bone flap back onto the skull area are also visible and sticking out under the skin on the skull and I most certainly feel them. I’m not crazy about the dent or the brain “bling”, but it is what it is and I doubt anyone but me would really notice them. Although when I have my hair parted differently and the light hits it just right, Dave will notice and always points it out. I’ve seen much worse dents on other survivors I have met, so in comparison, I’m lucky.
BRAIN FUNCTION:
Well, I have survived two more catalog seasons, so I guess my brain function is doing okay. I certainly feel tired at times, but I’m very, VERY lucky that I can drive, work, read, and function on a daily basis. I’m a little slower and a little more careful when walking and traversing walkways, hills or paths because I have a bit of a fear of slipping or falling and hitting my head.
I do still struggle with some survivor’s guilt. Why, dear Lord, am I so lucky with my multiple brain aneurysms when two (and possibly three) people I loved so much were victims of the same ailment? One can say because God has other plans for me to help others. If that’s the burden I have to carry, then so be it. I can’t say I’m crazy about it though. I’d rather have Kim, Dori, my mom and Rhonda back.
So, I will celebrate my clip-aversary in some fashion I’m sure. I’m glad I’m still here and I hope a few others are as well.
A few weeks ago Dave and I attended the 35th Annual Atlantic Partners EMS Seminar at the Samoset Resort in Rockport, Maine. This annual event provides education to the most dedicated emergency medical service personnel, hospital staff and firefighters from Maine and New England. There were pre-conference courses, over 100 continuing education classes, and co-sponsored one day conferences from the Maine Ambulance Association, Maine Committee on Trauma, and Maine Cardiovascular Health Council.
We attended the Friday and Saturday sessions participating in the vendor area where we set up a Maine Brain Aneurysm Awareness table/booth. Not only is it a good way to help raise awareness for brain aneurysms, it’s also a wonderful way to connect with local EMS personenel and medical staff to alert them to the possible symptoms and signs that someone may be experiencing a ruptured brain aneurysm. Because of the nature of my own personal story on the morning of my rupture and my sister’s misdiagnosis and subsequent death from a rupture, Dave and I are particularly sensitive to educating EMS crews.
The morning of my rupture in 2006 presented me some classic stroke symptoms. Upon repeating our story throughout the two days, we saw many eyes being rolled, jaws dropped, and stunned expressions when we told them the ambulance crew did not take me to the ER. They basically left it up to us to go to the ER. I’d like to say I believe some of the protocols have changed since then, but at our monthly brain aneurysm support group meetings, we continue to meet some people who have had some of the same issues, or have been misdiagnosed. So, there is still work to do.
In hindsight, it is so very easy to say that I SHOULD have gone to the hospital. And those shocked expressions from the EMS members we met and THEIR insistance that they would have transported me, certainly made us feel good, but the crew that came to our house couldn’t have realized the seriousness at the time…unless they asked some very pointed questions. I need to cut them some slack; they’re only human despite the fact I could have died later that day, or the next day…..
The MaineBA Booth
Dave and I met some terrific people who devote so much of their time to helping others and making sure the health and well-being of the general public is a top priority. Some important connections were also made with individuals who can truly make a difference in the state’s regulations and protocols. There were several invitations from local groups for us to come and speak to them about our story and make them aware of what CAN be a serious issue if it’s not addressed in a timely manner.
One of the classes on Saturday afternoon was held by Dr. Evie Marcolini. Her main focus that day was to discuss difficult neuro cases and brain aneurysms were one of the topics. She stopped at our table a few hours prior to her class and spoke to us. Once Dave and I knew she would be addressing brain aneurysms and expressed a deep interest in our story, we felt it necessary to go the class. We both did a good job of making sure we kept to ourselves. This wasn’t a class for us, but for those people who are on the front lines of very difficult situations and we needed to maintain restraint in putting in our two cents.
Dr. Marcolini’s class was really wonderful as she provided several case studies of patients that would have altered mental states and questioned the class on what they would ask, how they would react, and what they would tell emergency room personel. It truly is that communication between the 911 responders and the patient that can set the ball rolling for precise care and attention later on.
What I took away from the two days was how dedicated those folks are and many are volunteers. I was surprised and pleased with the number of people who thanked US for being there and raising awareness. The number of people who knew someone or had a family member with a brain aneurysm was certainly eye opening. It’s a far more prevalent issue thoughout the country and our state. We even think we were able to convince one woman to get a scan. She had a family history and she could be highly succeptable to developing one and it’s far better to know you have it and treat it, then to have it rupture and potentially die as a result. THAT was one of our big messages: make sure EMT personal and 911 operators know of any family history of brain aneursyms and to let them know if a headache is the “worst of your life” and very different than any you have had previously. That’s assuming you are able to speak.
On our drive home, I realized I was tired of hearing my own story. Dave and I both retold it many, many times over the two days and I compared it to show and tell: I was the “show” (look at me, I survived and here are a few scars to prove it) and Dave was the “tell” (here’s what happened). There are those times when I just need to step away from brain aneurysms and take a break. It’s difficult to do since I live with them on a daily basis, but I was glad I had Sunday to detox and reset. It wore me out.
I hope we made an impression on people and that their next emergency call for someone with a horrible headache will result in them asking if they’ve experienced anything like that before or if there is a family history of brain aneurysms. Those two simple questions could save a life and get someone to the ER in time to prevent devastating brain damage.
Thank YOU to everyone who goes out there to help save lives!
On a fun side note:
The celebrity guest at the conference on Saturday was Randolph Mantooth from the 1970’s show EMERGENCY. He played the lovable Johnny Gage and I grew up with that show, so I got a little girl-silly when I saw him. He’s a huge supporter for the emergency medical community and the money raised from his autograph session was going directly to local funds here in Maine.
I actually got in line twice. First time to get the autograph and a 2nd time because my camera wasn’t working on the first turn through. LOL He was very sweet and still looked darn good for 70 years old and fighting cancer.
A local EMT also bought and redid an old Dodge truck and turned it into an almost exact replica of the Squad 51 truck. I flipped when I saw it Friday night before we left the vendor area. I did a double take and saw it and realize it was THE truck. On Saturday morning, I wanted to take a photo of it and right after I took a photo, the gentleman who worked on the truck, came immediately up to me and held his hand out like he was going to take my camera away from me because I took a photo! Instead, he took my camera, but also grabbed one of the fireman’s hats off the truck and took MY picture with the truck. Pretty neat.
The 2015 KAT-Walk & Karo-5K for Brain Aneurysm Awareness was held this past Saturday and the weather Gods, or at least our angels we call Kim & Karolina, were on our side.
The gentle rising of a hot air balloon greeted us.
We arrived at the Back Cove to see the sun come up, and as we were unloading the trailer, I noticed a hot air balloon slowing rising above the horizon across the bay. I had to stop and take a photo as I didn’t know which direction it was going. Thankfully, it glided right over our location and provided a stunning view of the extremely colorful patterns. It was fitting the bright colors were in our array of colors; the teal blue for Kim, the red for Karo, the orange for Nolan and blue and white for Scotland! 🙂
We were extremely blessed by warm, but not hot temperatures, low humidity, no rain and light winds. Some years the high winds can cause major issues with the tents, printed collateral, and flags.
The event was physically moved down to a location along the trail that allowed us to see more of the people involved. The previous years we were set up in a row along the gravel trail. Last year, we had no idea there were over 600 people there until the 5k started and they all gathered in one place. Once they registered, they became all spread out until that point. This year, our hope was to provide an area where the teams, families, and friends could gather and continue to be a “part” of the day with everyone else. I think we succeeded in that respect and some very positive comments were shared.
I’m usually set up in the Brain Aneurysm Awarenesstent and get to meet survivors & their supporters who are new to the event and welcome those who have returned. We also try to provide comfort and support for those who have lost a loved one. I know we celebrate those who survived, but we also try to remember the reason many of us are there is because we lost a loved one to this silent killer. We did have a tender moment of silence to reflect on those lost in the opening ceremonies and many people use the honor board to gather and take picture’s with their loved ones sneaker.
Another good thing about moving the venue location was having the Start/Finish line directly in the vicinity of our tents. Those who finished early, could continue to be apart of the event and still cheer on those who crossed the line because it was right there.
Because Dave is so familiar with so many of the families and participants through his direct personal contact with them, he knows so many of the runners, walkers and their supporters. So, as he started to see some of them come across the finish line, he grabbed the microphone and started announcing them. I think that added a real special, personal touch. I know it was nice to have my name mentioned as I crossed the line all by myself again. Heidi McCausland….team of one!
The Board of Honor where sneakers with a survivor’s name or one who was lost are placed.
Usually the most heartwarming and heart-wrenching parts of the day are when we meet random people who are coming to the event for the first time and are reluctantly coming to the tent to read more about brain aneurysms and who want to write their loved one’s name on a sneaker to add to our Honor Board. I met one women who was there to walk for her best friend whom was lost 6 years ago. This was her first time there and it was very emotional for her. I hope participating in the event and honoring her friend in such a way helped comfort her.
I also met another woman who had lost her sister two years ago and was just walking by and saw the signs for the event. She didn’t participate in the event, but came to our tent, signed in, made a sneaker out for her sister, and took a brain aneurysm awareness bracelet. No matter how we reach out and connect, it’s all important.
Last year’s event, which raised a record amount of money, helped fund a $25,000 Chair of Research through the Brain Aneurysm Foundation. The recipient of that award made the trip to our event to honor US and to participate. Not only did Dr. Kimberly P. Kicielinski make the trip from Alabama, via Houston, then Boston, but she participated in the 5K, received honors from our committee, made a speech, and then she and her boyfriend Justin helped tear down the event afterwards and joined us for an after-event party.
The work Dr. Kim is doing is very important. She is trying to determine the thickness and fragility of artery and aneurysm walls. Exploring this issue could result in saving many lives. If doctors are aware an aneurysm is at higher risk of rupturing due to a weakness in the wall structure, they could act and operate and save a life before a potential catastrophic rupture occurs. Dave had some wonderful communications with Dr. Kim via email prior to meeting her in person at the event and things she said and obviously has done and is doing, really struck a chord with our entire committee.
For me personally, after my 2nd unruptured brain aneurysm was clipped in January, 2014, the doctor said we dodged a bullet because the aneurysm itself was very oddly shaped and had a weak point at the top of it: something they weren’t able to determine UNTIL they opened up the skull and had physical contact with the aneurysm. Dr. Kim’s work could provide that information before they go into the skull. If I hadn’t made the preventative decision to have that surgery, it could have killed me…and sooner, rather than later.
I left the shade of my tent to participate in the 2-mile walk this year. I walked alone again. Many people pass me, some are way behind me, but I finished and was proud. I walked for myself, my sister Dori, Dave’s niece Kim, for my fellow survivors who couldn’t join us this year, Lori & Julie, and for all those who don’t have the support of co-workers, friends, or even family members.
The trail is a beautiful spot for a walk/run and Dave is always insistent that there be high tide during the event to provide the best possible view. Trust us…you don’t want to be walking there when it’s low tide. LOL Just not pleasant. The flags were waiving, the surf was light and the seagulls were chattering away.
Two special guests were Christine Doherty Kondra and Alison Sedney from The Bee Foundation, a national organization focused on research for brain aneurysms. It was wonderful they made the trip up from Philadelphia to join us and speaking to them reminded me of how important the national dialogue on brain aneurysm awareness is. So many people don’t know what a brain aneurysm is until they, or someone they love, is affected by it. Alison lost her daughter, Christine’s cousin, on Christmas day to a ruptured brain aneurysm and just like all of us who participate in the event on Saturday, she too, has decided to DO something. The efforts of The Bee Foundation not only raise awareness, but provide critical medical research. It was great meeting them.
Every year we try and try to get some local television coverage of our event. Local news can cover a story such as the new Passy Pete, the lobster that can predict six more weeks of summer, but we’re unable to get them to cover our event? I just don’t get it and it’s very, very disappointing and depressing.
However, this year committee member, and co-founder of the KAT-Walk, Art Piteau, did a wonderful radio interview that aired the morning of the walk on the Derek Volk Radio Show on WLOB radio 1310. We will definitely use this resource in the future and Art did a great job on a subject he’s very passionate about because he adored Kim and was a large part of her life. HEAR AUDIO INTERVIEW>
We were also blessed to have a wonderful article written by Harrison Thorp for The Lebanon Voice newspaper. He was at the event with his partner Martha who was a very recent brain aneurysm survivor having had a craniotomy and clipping just a few short months ago. They both participated in the walk and gave a heart-felt report on the day’s events including the story of one survivor, Deb Hanmer, who is source of inspiration for many of us. It was wonderful to get a new participant’s perspective. READ ARTICLE>
Overall the event was successful in my eyes. We had a tremendous group of volunteers this year which made set up and tear down so much easier and even, dare I say, enjoyable! Thank you to everyone whose tireless efforts provide a beautiful, personal, and productive event. BRAVO!
Unloaded and ready for setting up
The gentle rising of a hot air balloon greeted us.
Floating directly over head
Aneurysm awareness ribbons and bracelets
Stunning day!
Our centerpiece
The Wall of Honor
Excited to be there.
Walkers around the cove
Myself, Christine & Alison from The Bee Foundation
Inspirational survivor, Deb Hanmer
KAT-Walk & Karo-5K Chair of Research recipient Dr. Kimberly P. Kicielinski
Heidi's Brain Blog 