Category: Doctor

Annual Angiogram

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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

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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

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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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Difficult Post

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Over the years since my ruptured brain aneurysm, it has been very easy for me to simply copy & paste links to other people’s aneurysm stories of hope, struggle and survival. However, this particular entry is one of the most difficult I have posted because it affects me and my family personally.

Two weeks ago, on Mother’s Day, my older sister Dori suffered a serious ruptured brain aneurysm. Damage was done to her brain stem and a secondary part of the rupture created another hemorhage deeper into her brain tissue. If her husband had not been home and close to where she collapsed, she may not have even made it to the hospital. But after a trip to a local hospital, then a helicopter flight to Buffalo General, she is hanging on, but barely. She’s been treated by some of the top Dr.’s in the country including Dr. Snyder and Dr. Sorkin.

They coiled the 6 mm aneurysm with 3 coils, but because the secondary hemorrhage created more blood, a clot had also formed and they had to remove part of her skull to remove the clot from her brain. She has been in a coma since the surgery, non-responsive, on a breathing ventilator and still suffering vasospams and seizures. The heavy sedation she has been under due to the seizures, has prevented them from getting a complete and thorough neurological exam to determine the amount of damage and her chances of any kind of a recovery.

It has been heartbreaking and frustrating. And at times I almost wish I were not as well versed in aneurysm issues as I am because I know the seriousness of the situation as a result. Injury to the brain stem is so severe because it is similar to the motherboard of a computer being disrupted or destroyed. The brain stem, controls consciousness, respiratory (breathing), heart rate, ocular (eye) movement, dilation and contracture of the pupils in response to light/darkness, swallowing and facial movement and all neurological signaling from the brain to various muscle groups. The brain stem literally controls all that we do and how we process the things that we do each day. Right now, Dori isn’t doing most of these things on her own.

She has also developed pneumonia and has been dealing with a fever although we’re hoping that has gone away now. How much can one person be dumped on? Lighten up God, would you?

Dori was with me from day one of my rupture in 2006. She immediately flew out to Maine to be with me and Dave during my surgery. As I have stated repeatedly, I’m one of those very lucky ones who survived her rupture with no further deficits. Dori was there after my surgery as I was wheeled out of the recovery room to ICU and was complaining about how thirsty I was and the tape residue on my mouth from the breathing tube. She comforted Dave through it all. They cried together and they laughed together when I started joking straight out of surgery.

She also flew into Maine to be with me last year when I had my recoiling of my larger aneurysm done. I now have 20 coils in that one aneurysm and another smaller aneurysm was discovered along the way that we’re watching. Dori was able to meet my new doctor, Dr. Ecker, who ironically trained at Buffalo General and most of the Dr’s and a lot of nurses we spoke to there remembered him.

I wasn’t able to greet Dori and be there for her when she went into surgery. Unfortunately, at the time, Dave and I were in England. My family struggled with telling me, but finally decided they had to. We cut our trip a week short and flew home from England as soon as we could and joined my family at Dori’s beside. Truly devastating to see her in the condition I was presented with. Her long, thick hair was gone, shaved to do the clot removal. Her head bandaged and wired, along with a drain. The breathing tube and ventilator doing the work for her. Every type of monitor attached to her that could be. Heartbreaking…..heartbreaking. Why couldn’t she have come through her rupture in the shape I did? Several reasons I believe.#1, God just had other plans I suppose, but #2, I firmly believe Dori was having symptoms of the aneurysm weeks (perhaps even a month) before her rupture. She’s been having back issues since last November and had back surgery scheduled. She was in horrible pain for months and was unable to work. During that time, however, she suffered what she thought was a migraine. My family is susceptible to migraines and both my sisters and I, as well as my mom and some cousins all have suffered them in some form or another. This time, however, Dori knew it was different. Then she had boughts of nausea that went on for a few more weeks. Her husband took her to the ER, then took her to an acute care center. The acute care center was more of a clinic without full medical facilities of an emergency room situation. They were there because they were offered quicker service. Frankly, I’d rather have more completed care, but that was their decision.

Apparently the last time she was taken to the acute care Ccnter, she DID ask to have a CT scan. Either they refused, or they didn’t have the facilities. And even after telling them her sister and cousin had had brain aneurysms….they didn’t even insist she go to an ER. Very, very, very frustrating to find that out because her rupture MAY have been prevented. More heartbreak. And her husband told me after her back surgery she told him she just didn’t feel right. God, she should have been looked at.

I’ve been trying to get both of my sisters to get scanned for aneurysms since my ruptured. They’re both at high risk simply by being smokers and having a 1st degree relative with aneurysms (I now have two) and two 1st cousins who have had aneurysms. If discovered, an aneurysm can be treated before it ruptures preventing rupture, stroke and death. I hate, HATE that it takes something like to this open people’s eyes, but I guess it has. We need to get my other sister scanned, and soon.

I am hoping and praying Dori will show signs of something soon. She has a beautiful 15-year old son and husband who need her and God knows I need her. She’s the caregiver for our family…she helps everyone get through tough times like this….we need her here to help us help her. If God has plans for her, I wish he’d let us know.