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 16 coils plus 4 more, 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
20 Platinum Coils
And no, I do not set off the x-ray machine at airports.
Here is a short video clip I took a week after my 2nd brain aneurysm was clipped back in 2014.
Because this is MY blog and I can write whatever I want, allow me to toot my own horn for a wee bit.
For many, many years, we have tried unsuccessfully to reach out to local print & television news outlets for coverage of our organization’s efforts to raise brain aneurysm awareness in the state. We have provided stories to the right people at the right times, but there has never been coverage of our annual KAT-Walk and Karo-5k.
Last summer we FINALLY received some television love after I responded to a local news reporter’s story on Twitter. She immediately responded to my reply and Dave and I ended up hosting the reporter in our home for a short interview and two very short spots on the local news station that evening.
A few people saw these videos and commented and we have no idea of knowing how many people actually saw the report and subsequent videos on social media, but if one person saw them, listened to what we said, and went to the hospital to get checked, it was worth it. We haven’t heard if anyone came to our KAT-Walk & Karo-5k as a result of watching the story either, but we still want to get the word out there.
When Mira, one of our committee members who lost her 27-year old daughter Karolina to a ruptured brain aneurysm, was trying to solicit sponsorship funds for our walk & 5K last year, she met a Portland, Maine lawyer. Derry Rundlett offered up his services in the form of impersonations of Elvis and Jerry Lee Lewis at our Dance for Awareness event in March, in exchange for a television appearance on his monthly cable show in Portland.
Derry is 75-years old, full of energy, and was extremely generous with his time and money at the dance. His performances were great fun and fit in perfectly with this year’s Rock n’ Roll theme!
Dave agreed to be on his show some time in April. He asked me to be a part of it as well, so we drove down to Portland, met Derry for lunch, then walked over to the studio to film the 25-30 minute show.
Because Dave and I have spoken to so many groups and organizations about brain aneurysms over the years and how we came to be involved with raising awareness, speaking to Derry came naturally, it was just in front of cameras and in a studio this time. Neither of us were nervous but we certainly wanted to make a good impression, represent our organization well, and raise awareness about brain aneurysms. I think we were successful on all counts.
We had a rough outline of the show, but weren’t aware of exactly what questions Derry would be asking us.
Although I have spoken to many people about my own experiences with brain aneurysms as well as about my sister’s death from one, for some reason after this taping I was quite sad and subdued on the drive north back home. Dave and I chatted a little bit, but I really wasn’t in the mood to chat. I have yet to figure out why talking about it on this specific day and in this arena made me sad. I suppose it just “hits me” on some days. I also think because Derry expressed such an interest and appeared to be deeply touched by our stories and our efforts, it rubbed a nerve/emotion that had been resting comfortably for awhile.
And, as usual, I don’t hear much feedback from my friends or co-workers when these shows are brought to their attention, which also depresses me. I need to stop expecting that support. If I stop expecting it, then I won’t be so disappointed when it never comes. You’d think after 12 years I’d learn….oh, well. You can lead a horse to a computer or cell phone, but you can’t make them watch things, right???
At tonight’s brain aneurym support group meeting, I was reminded of the potential peril I may still be in.
My neurosurgeon/interventional radiologist gave a presentation about new treatments of cervix carotid artery brain aneurysms — aneurysms on the carotid artery in the neck. This was very relevant to one survivor in our group who has a 2nd aneurysm that is being watched right now in that sam area.
This report was originally given to neuro-medical doctors and was quite detailed with highly-medical terminology. As explicit as it was, one was able to get the gist of it: they’re doing some pretty amazing things these days and saving lives.
The report was also funded by a research grant sponsored by our Maine Brain Aneurysm Awareness Committe, and Dr. Ecker explained how the money we gave was being used to purchase the detailed imagery needed for this paper. We are thrilled to be able to do it.
This presentation was about 30 minutes interspersed with questions from our group and Dr. Ecker giving us great explanations. Then a second, 10-15 minute presentation was given regarding his use of the pipeline procedure which is saving many, many lives and used more and more. I only wish it could be used with my case.
It was humbling of Dr. Ecker to admit that there are some aneurysms that are just trouble makers and that they can only do so much in some cases. Meaning, they’re still only human and one of their biggest challenges is the interaction between metallic fixtures and human biology with in the brain.
Some people just have such funky arteries due to vascular disease that the doctors can try and try to do everything they feel is right but due to the physical makeup of their arteries, it’s a challenge. I’m pretty sure I’m one of those challenges with my larger1st aneurysm.
Dr. Kwan, my doctor at the time in 2006, did the best he could at that time to fix my 1/2″ diameter brain aneurysm and save my life. It worked…for five years until the 16 platinum coils inserted into the aneurysm started to compact and blood started to get back into the aneurysm.
Enter Dr. Ecker and the stent and four additional coils he added to my metal repertoire. This procedure went very well and everything looked great. Until more blood started getting into the neck of the aneurysm again and we are now watching it.
Because I already have a stent in that artery directing blood flow past the neck of the aneurysm, it’s highly unlikely and not recommended that using the pipeline will, or CAN be used to keep blood from getting back into the aneurysm. And the research and reported procedures on putting a stent inside of another stent with similar conditions is non-existent. Hence…more waiting.
In the meantime, I live my life one day at the time hoping more blood isn’t getting into the neck and forming a bulge there that may, or may not rupture. I don’t have high blood pressure, I have never smoked, but I do have a highly stressful job for about 3-4 months of the year and I am not eating that great or exercising. From what I see, even if you ARE in great shape…if your arteries are “funky”, they’ll do what the want to – aneurysms really don’t discriminate.
Dr. Ecker and I have previously discussed options and they’re quite limited at the moment, but seeing the groundbreaking procedures that are being done in our very own state is giving me hope that a solution is in sight. I’d prefer NOT to be one of those challenges, but my arteries have other ideas.
I don’t think about it everyday, but certainly after a session like this, it’s the topmost thing on my mind and knowing there are doctors and a great staff here in the state of Maine is a comfort. I KNOW they’ll do their best and I KNOW they’ll give me the best advice and recommendations at their disposal. We are blessed to have such talented doctors in our state who are taking such good care of us. THANK YOU!
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…..
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.