Today’s Top Story

Now that my family, closest friends, and co-workers know, I can let others know about my aneurysm news. I’m going to have my 2nd aneurysm clipped in January.

I found out in April, 2013, right before we left for Scotland, that my 2nd smaller aneurysm was actually visible on the original scans done in 2006 during my rupture of the other, larger aneurysm, but it was never mentioned to me in those immediate checkups with my old doctor. My current doctor indicated he felt we should start thinking about doing something about it. That scared me and certainly gave me pause about our trip to Scotland. Well..it was more like denial that anything was wrong. I was going to Scotland, dammit. Which we did!

The doctor said his office would call when we got back to discuss my options. They did call in June, but I wasn’t prepared to discuss it just yet.

Then, after our annual walk and run for Brain Aneurysm Awareness in September, I met some fabulous survivors and it gave me the strength to make a decision, so Dave and I met with the doctor at the end of September and the decision was made to proceed with clipping.

Several factors with regards to MY aneurysm and history, made that decision easier. I guess:

  • I have a family history
  • I have previously ruptured
  • The 2nd aneurysm has grown in the last six years
  • I’m still relatively young
  • I have great health insurance
  • I want to go to Scotland again!

Even though Dave and I are, sadly, quite educated on brain aneurysms and the treatments, we went armed to the meeting with quite a list of questions for the doctor. Dr. Ecker spent about an hour and a half with us and his recommendation was to go with the more physically invasive clipping procedure over the less-invasive endovascular coiling which I have had previously.

When discussing both options, he just had to many “if”s with the coiling and the aneurysm itself is more rectangular in shape than a balloon or bulb, which leads me to believe keeping a coil in the darn thing to begin with would be tough. The doctor agreed clipping would be more durable and stable than coiling in this case.

Since I have already had a compaction issue with my other larger aneurysm, which now has 20 coils, I really didn’t want to have to go through the endless checking and worry with TWO aneurysms now. I’m very confident that clipping is the way to go with this particular brain aneurysm

So, after surviving another catalog at work, I will be making plans for the surgery. It’s nice to HAVE the luxury of planning and a date for the procedure. With a rupture, there is no advanced warning. There is no indication you’ll be bed-ridden for months. There is no warning your family’s life will be changed for ever.

By deciding to DO something about my aneurysm, I AM in control…not the other way around. Of course, I’m scared. It is open brain surgery, but meeting, and knowing other survivors has given me the strength to show this aneurysm who’s the boss. I’m one of the lucky ones because I know I have an aneurysm.

The doctor showed me my brain scans, drew me diagrams and showed me where the incision will be made. They shave just that part of the head, then remove a 2-3″ diameter part of the skull along my hairline around my left eye. They’ll isolate the aneurysm away from the artery and place the clip on it. Then close up the skull. Possibly a 2-night stay in the hospital, then home for a 6-week recovery period. It’s not an emergency situation so the recovery period is far less stressful and difficult, although fatigue will still be an issue.

I feel fine. There are no symptoms that something is wrong, and that’s the whole point of doing something now. Could something go wrong during the procedure? Yes, but the risks of that are far fewer than if I let the aneurysm continue to grow and HAVE to do something about it during a tramatic event. Been there…done that…bought the t-shirt Pedro.

Annual Angiogram

Last week was my annual angiogram to check on my large, 20-coiled annie and see how the smaller aneurysm that was discovered in 2011 is coming long.

As usual, it’s an apprehensive time. Even though I have felt fine, one just never knows if the coils have compressed again or the size and shape of either aneurysm has dramatically changed…even though it has only been one year since my last checkup.

Thankfully, at the follow-up appointment two days later, Dr. Ecker said the large aneurysm looks very good. The stent and additional coils that were added two years ago are doing their job…keeping blood from getting back into the aneurysm. He also said there were no NEW aneurysms anywhere else. Great news.

The smaller aneurysm has grown a little bit. It’s not a cause for alarm…yet, but the fact I’ve already ruptured once and it’s at an odd spot on the artery AND has a wide neck indicates to the doc we’ll have to start considering doing something about it. Not immediately, but at some point….while I’m still relatively young – and that’s not much longer! LOL

Even though coiling is the least invasive procedure, I have since learned there CAN be complications and it needs to be monitored more frequently. Clipping is far more invasive, and in my mind more dangerous, but it’s a far more permanent treatment. I need to do more research and ask some people, but I’m starting to lean more in that direction. I could care less about a scare on my head, but it’s the danger involved in the procedure and the recovery period afterwards should there be any complications during the process that concern me.

As usual, the staff in the Maine Medical Center radiology & neuro-endovascular teams were top notch and provided great care. We had a long wait as there was an emergency stroke case that was brought in that needed Dr. Ecker’s care, but everyone was great and I had no residual pain or major discomfort after the procedure. Thank you everyone! Here’s hoping I don’t see any of you for awhile!

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KAT-Walk & Karo-5K Events 2012

Even before yesterday’s 4th Annual KAT-Walk and 1st Annual Karo-5K started, I knew it was going to be a special event. The number of strangers effected by brain aneurysms that have contacted us this year about the event was astonishing. I think it also meant that our advertising efforts were finally paying off.

People from Maine, Massachusetts,  New Hampshire, Rhode Island, Maryland, and as far away as North Carolina informed us they were coming to the Walk/Run andKim and Heidi let us know WHY they were coming and with whom. Sharing their stories of loss, strength, courage, and survival  – our original tribute to Kimberly Tudor’s memory has now become a tribute to anyone touched by brain aneurysms. I’m beginning to think that’s an even bigger tribute to Kim because of her desire to help people and comfort them. I constantly see her smile on these days and I know she would be proud of all of us and the hard work we’re doing.

As a survivor of a ruptured brain aneurysm, and living with another aneurysm, I love meeting other survivors. Our stories are all different and our paths of survival are also very different. Some are more successful than others and all of those examples were represented yesterday.

Trailer PicDave and I arrived earlier than others at the venue to set up the main display. We wanted something to greet the volunteers as they started showing up to get them excited about the event. The trailer that transports all of the signs, banners, posts, poles, tents, boxes and forms from our house in Augusta, also doubles as a beautiful display of flags. Dave decorates is differently each year. Last year, because the walk landed on the 10th anniversary of 9/11, he decorated the trailer to remember those fallen that day.

This year, because the run was in honor of another family who lost their young daughter last year, the Karo-5k was run and new banners, signs and directional materials had to be created. The trailer included a photo of Karolina and Kim and new signage that Dave and I created.

The committee also decided to solicit for sponsorship this year to help defray the cost of the event and we were highly successful with the venture and could not have done it without them!

Setup for the event, as usual, was extensive and beautifully displayed. There was a brief rain shower that was significant enough to get everything wet, but not enough to dampen anyone’s spirit.

The rain stopped, the sun came back out and the winds picked up. Being on the coast allows for stunning views, the sounds of the water along the shoreline and high winds! We had all of those.

I was joined in the Brain Aneurysm tent by a fellow survivor, Julie. Dave and I had gone over to her aneurysm event in NH last month and she repaid that favor, but also provided a two-pronged attack in our tent to reach out to other survivors or those effected by aneurysms. Julie is a fervent advocate for early detection and fighting for your rights as a patient and demanding your own self care. She is also a breast cancer survivor. Very proud of her.

Two young woman who attended the event yesterday had flown into Maine from Baltimore on Friday night. Sarah had just lost her mom a month ago to a ruptured brain stem aneurysm. At 27 years old, we were impressed she decided to use our event as the way to honor her mother so soon after losing her. It was emotional and comforting for her and I believe everyone who attended welcomed her with open arms and knew how difficult it would be for her.

Both of the mother’s of Karolina and Kim took Sarah under their wings during the day and gravitated towards her, which was understandable, sad, and sweet all at the same time. They lost their young daughters who were both about the same age as Sarah, and Sarah had just lost her mother. Two mothers without daughters and a daughter suddenly without her mother. Touching and heartbreaking.

My own personal heartbreak for this year’s walk was honoring my sister Dori who we lost in May to a ruptured brain aneurysm. She had always wanted to come up for our walk and had met Kim when I had my rupture in October of 2006. How awful, ironic, and heartbreaking is it that Kim  and Dori were both lost to ruptured brain aneurysms and I was the one who basically “introduced” them to aneurysms and got them interested and involved. It’s just not right and basically sucks. I find that word one of the best to describe it.

So, I decided to relinquish my duties at the aneurysm tent since Julie was helping me and complete the 3-mile walk in Dori’s honor. The last time I did the walk, was in 2009…in honor of Kim. I recalled a beautiful rainbow appeared that day and we knew it was Kim. Yesterday, I started the walk and about a mile into the walk I realized a little butterfly was flying in front of me off to the side.

I was walking by myself and kept seeing the butterfly, then it reminded me of the butterflies that were placed in the beautiful flower arrangements at Dori’s memorial service and the emotions took over. After trying to walk and cry at the same time, I realized I needed to get off the path, so I stepped aside and let it all out for a bit. Then I resumed the walk. Perhaps this beautiful monarch butterfly was Dori joining me for the walk finally.

Heidi and Dori on boatAs I went around the Back Cove and up onto the bridge, I looked across the water and saw the many flags and tents flying in the wind from our event. It was a beautiful sight and I felt very proud. Then as I rounded the corner and neared the 2.5 mile marker, I was looking at the chop in the water and remembering the one and only time Dave and I took Dori out onto the harbor on his sailboat when she came to Maine for a visit. Dori was scared too death, but we had fun. LOL It was a good memory.

I didn’t have anyone greeting me, but as I dragged my weary bones and feet across the finish line, I blew a kiss to the heavens above and told Dori that was for her. A few minutes later I saw another survivor, Leray, cross the finish line and made sure I ran (well, walked!) to greet her and congratulate her for completing the walk. I was very proud of both of us and Leray will be going in for a recoiling next week, so I wanted her to know how proud of her I was.

This year was also the first time some members of the local medical community participated. My own doctor, who did my stenting and recoiling in 2011, came with his family and Julie promptly made him wear one of the Brain Aneurysm Foundation baseball hats, which he did. He even ran with a baby stroller in tow. We’re hoping to have more medical events in the future so that local EMTs are educated to the symptoms as well as the general public. As I have mentioned before, if I had not gone to the ER and had myself checked out and the Dr. there hadn’t been suspicious of an aneurysm, I may not be here today. Many people have brain aneurysms misdiagnosed, and many are not here today as a result.

We don’t have the exact numbers yet, but it appears there were over 450 people at the walk and run. The run was very well attended and I know that meant a great deal to Karolina’s family and friends. Karo was an avid athlete and had just completed a triathalon a week or so prior to her rupture last July. I’m sure she would have been proud of all of the hard work her family and friends put into supporting this event.

There was a silent auction and this year I finally won those tickets to the Portland Symphony Orchestra’s Christmas concert in December. We had a magician and face painting for the kids and donated food and water to keep participants nourished. This year we rented a sound system with a wireless microphone and were lucky enough to get a fantastic announcer who was a close co-worker of Kim’s. Larry did a wonderful job. I also put together a playlist on my iPad that kept the crowd upbeat and happy.

Unfortunately, I was so busy I do not have any photos of the event myself. But there are some terrific photos of the run and walk HERE-››: Maine Running Photos. Once I receive more photo of the actual venues and tents, I’ll post more links. These are mostly of the run and walk itself and not of the fantastic setup and the new “Honor Board” that was a hit.

Not only is the Back Cove location a stunning venue to hold an event such as this, there is a real sense of community when family and friends meet to support one another and share stories and memories.

Brain Aneurysms don’t discriminate. Young, old, men, women, black, white….doesn’t matter. The sudden and shocking destruction of a rupture CAN be prevented in most cases if the aneurysm is discovered before it ruptures and that’s the word we’re trying to get out. If you’re “lucky” enough to have symptoms before a rupture (some do not), it’s important to get it checked out and insist on getting a good CT-Scan or an MRA. It could save the life of a loved one, or yourself.

And Now More Questions

This past April I had my 1-year checkup on my shiny new stent and my additional, sparkling new coils. Oh, and another look at the other 3 mm annie that’s sitting there.

Although I got the all-clear to fly to the UK, the Dr. did notice a slight blip on the original aneurysm, but he wasn’t overly concerned about it this year. We’d monitor it next April. And the smaller Annie hadn’t grown any larger or odd shaped. All good news respectively speaking.

Obviously, the furthest thing from my mind while we were finally in the UK for our delayed honeymoon in May, was losing my sister to a ruptured 6 mm aneurysm. I’m still trying to understand and come to grips with her passing, and in the manner it occurred. It’s too hard and it’s still too unbelievable.

But, her death has also forced me to rethink my decision in 2011 to just monitor the smaller aneurysm. The Dr. did not feel it was at risk for rupture any time soon, but how can he know for sure? How does anyone know if the stress from losing my sister, canceling the rest of our honeymoon, and the annual stress related to the catalog won’t put more pressure on that little guy, or worse yet, additional strain on the larger, already-susceptible 11 mm aneurysm? They don’t.

The Dr. said the 3 mm one would be a good candidate for clipping because of its shape (rectangular), but the mere thought of having my head cut open and the risks and recovery afterwards have me very nervous. BUT it would be my decision and it would be an elective procedure to prevent a major rupture. In my mind, that’s the more important factor.

Now the pisser is that I have to wait until next April to address all of this again at my checkup. Not sure, in light of what my family just went through, I can wait that long.

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