Category: Brain Aneurysm

Racing Against Brain Aneurysms

Published on by heiditea2 Comments

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The title says it all: the sooner we get the best, up-to-date accurate facts out to people, the more lives we can save!

Such is the message behind the hood and rear, deck lid sponsorship on the #52 Chevy Camaro for this weekends NASCAR Xfinity race at New Hampshire Motor Speedway.

The Lisa Colagrossi Foundation, a worldwide leader in raising awareness for brain aneurysms, sponsored the car driven by Iowa native, Joey Gase. The foundation asked for people effected by brain aneurysms to donate money to have either their name or photo of a loved one on the car during the race. The amount of exposure Joey and the car got on this national event was priceless.

Dave and I were asked as special guests to attend the race. And we cannot say enough about Joey and his father Bob. They were extremely generous with their time and hospitality. We certainly never demanded or asked of anything, but they offered so much from golf cart transport to ear plugs and water. Respect breeds respect.

The car was beautiful (if you can say that about a stock car) and seeing it in person was emotional. Watching Dori and Kim’s photo leave the garage area was almost like setting them free to go fly on the track. 32 individuals effected by brain aneurysms were on the car including notable figures such as Albert Haynesworth (NFL), Maryam Dabo (James Bond girl), Andre Jones (TJ Jones/NFL, Detroit Lions father), and Ashley Harris (wife of Tommie Harris/NFL, Chicago Bears) and a few not-so-notable figures such as myself, my sister Dori and Dave’s niece Kim.

Bob Gase and Todd Crawford were wonderful hosts and showed us around the track. We also had an opportunity to spend time with Joey in his hauler to cool off and get out of the sound and noise. He’s a wonderful young man and shouldn’t have had to lose his mother at such a young age. I had fun talking racing with him – he may not say the same. 🙂 Dave and I are big NASCAR fans and we have been following him in the Xfinity series and the few cup starts he has had.

This summer weekend race at New Hampshire is always a busy one in the garage area because they have three different series racing on Saturday and the Sprint Cup teams also had several practices, so there were opportunities to see a lot of on-track action. We enjoyed some of the Whelen Modified race and got to see the end of one of the cup practices. With the pit access we had, we were able to get close to some of the cars and drivers on pit road. Dave snapped a photo of Jack Rousch and saw Richard Childress walking by. We’ve been to three races at NHMS before, but this was a different experience for sure.

The pit and garage areas are regular hives of activities throughout the day and one needs to be aware of your surroundings. Many carts, cars, gas cans, and groups of media moving back and forth between the garages and trackside. I was run into on pit road during the modified race because I had ear plugs in and he couldn’t stop the large cart. He hit me gently and did apologize and we had a laugh.

The weekly circus that is NASCAR is amazing. The logistics and organization that goes into each team and just getting the event produced is impressive. And then add to that the wonderful staff at New Hampshire Motor Speedway who could not have been nicer. A stellar group of people and a lot of fun.

We were able to take many photos with Joey at the car before the Xfinity race as well as stand next to the car during opening ceremonies and the singing of the anthem. Something I’ve only seen on TV previously, or in the stands. This perspective was a lot of fun and It was emotional to be standing next to the car and see our loved ones there with us.

Then after the anthem was sung Joey’s dad led us over to the team’s pit area and informed us we’d be sitting on top of the pit box for the race! Now THAT was very, very unexpected. We weren’t really sure where we’d be to watch the race, but I hadn’t even thought about the actual pit box that is wheeled over from the hauler. It was a tight fit, but Todd, Dave and I climbed the narrow ladder to the three chairs for us. What an amazing view for a race! Dave and I geeked out a wee bit I think.

The sounds and smells of the cars racing by and coming in for pit stops is either something you love or hate. I happened to be one of those people that loves it. My sister Dori and I always used to go the demolition derbies at our local fairgrounds every year until I moved to Maine in 2001. She was also a NASCAR fan back in the day and I truly felt her with my on top of that pit box geeking out with Dave and I and enjoying the event immensely.

Joey didn’t qualify for the race very well, but he move up during the race and finished a respectable 25th place out of 30 cars. He is a good driver. He doesn’t ruffle any feathers on the track and hasn’t caused any fights on pit road or in the garage area (that I’m aware of!) and I think he has treated other drivers with respect. Again…respect breeds respect. I think the two media pieces produced by NBC Sports about Joey over the weekend were a reflection of the kind of young man he is and how he has taken something that is very painful and is helping others. It was a pleasure to meet Joey and his dad and we will continue to support him and cheer for him on a weekly basis.

It was a special, special day at the track and it was wonderful to get close to the action. As a double brain aneurysm survivor, I took great pride in having my name on the car and hoping the words “brain aneurysm” have now entered into the vocabulary of the NASCAR community in a bigger fashion. There are a few people who have even effected within the NASCAR family and we know they’re going to be helping TLCF help raise awareness and make the public more aware of the symptoms and their own personal stories.

Thank you to Todd Crawford and The Lisa Colagrossi Foundation for making this day possible. We look forward to future endeavors and helping to save lives.

  • View photos below and visit our Facebook page for more photos at: KAT-Walk & Karo5k

EXTRA, EXTRA! Read All About It!

Published on by heiditea1 Comment

I wanted to let my blog followers (all four of you), family, or friends know about something special that is happening this coming Saturday on July 16th at the New Hampshire Motor Speedway. Even if you’re not a racing fan, we hope you will watch the pre-race show and the race to show your support for brain aneurysm awareness. The race is on NBCSN (which is NBC Sports Network) on your cable system – NOT just NBC. Or, if you’re in the New Hampshire area, come on over to the speedway the day of the race! Tickets are very affordable there.

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This main logo will soon be joined by the faces and names of those affected by brain aneurysms.

A national foundation for brain aneurysm awareness (The Lisa Colagrossi Foundation) is sponsoring the hood of a NASCAR Xfinity Series car in the Saturday race. The Xfinity series is one level below the main Sprint Cup Series, which has the big boys like Earnhardt, Jr., and Tony Stewart in it. XFinity is kind of like the Double-A club in baseball. However, their races or broadcast nationally every week.

TLCF (the foundation) held a fundraising campaign to have the photos or names of a loved one who suffered or survived a brain aneurysm put on the car for the race to help raise awareness. I donated to have my sister Dori White‘s photo and name put on the car and I will also have my name (no photo) on the car as a survivor.

Kim and Dori
Kim and Dori will be honored on the car.

My husband Dave put his niece Kim Tudor‘s photo on the hood and our local Maine group The Maine Brain Aneurysm Awareness Committee will have their name on the car promoting our Kat-Walk & Karo-5k in September.

This is a HUGE deal for brain aneurysm awareness and Todd Crawford, the founder of the TLCF, is making some major strides in reaching a larger audience nationally. He lost his wife Lisa (who was an ABC reporter in NYC) to a ruptured brain aneurysm last March in 2015.

The driver is Joey Gase and he’ll be driving the #52 car. Joey lost his mother to a ruptured brain aneurysm and has done a lot of work with the Donate Life organization because his mom’s organs were donated and he was able to meet the recipients. Very moving stuff. We are thrilled he is helping us get more national exposure.

Todd informed us that NBCSN will be producing a vignette with he and Joey to highlight the special partnership and cause (Brain Aneurysms) and that it will likely air in the pre-race telecast of the race and the announcers will talk about the car and partnership at times during the race.

Dave and I are going to the race next weekend. The race starts around 4 p.m. We have been to races at NH before but we’re pretty excited about this one. The event will have double meaning & emotion seeing those photos and names on the car hood.

Thank you to Joey Gase, the NASCAR Xfinity Series, and Todd Crawford and the Lisa Colagrossi Foundation for their efforts in helping raise brain aneurysm awareness and saving lives!

Photo Shoot & Angiogram Follow Up

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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.

This Year’s Angiogram

Published on by heiditea3 Comments

I’m seriously hoping this is my last angiogram for awhile. I’ve seen that angriography suite far too often the last several years. However, it’s the best way to see what’s really going on with my pesky vascular system.

As stated in my previous blog entry, this angiogram was to determine if there were any changes to my original 11mm brain aneurysm from last year when it was discovered more blood was starting to creep back into the neck of the aneurysm. Obviously, the 20 coils and the one stent weren’t doing the best job they could be, but I’m still here.

Since there was a chance I’d be staying overnight, I had to go to admissions first and check in, then we went straight to the radiology department. They were quite busy today, although I reminded myself I’m usually scheduled for much earlier appointments. This is the first time I’ve had an afternoon appointment and I was VERY hungry and thirsty after not having anything to eat or drink since midnight the night before.

Upon entering radiology, Dave and I were greeted from a distance by nurse John, who we usually see when we arrive there. It’s a mixed blessing when you’ve visited a place so often you become so familiar with the staff of a hospital. John told my attending nurse that I didn’t need any instruction because I knew exactly what I was supposed to do in here. LOL Yes…pretty true.

The IV was hooked up, more questions were asked, and more instruction was given. We were most curious about the balloon occlusion test and what that entailed.

The BOT is a little more risky and it would also require another port and catheter into my other arm where something would be injected to bring my blood pressure down during the test. I wasn’t looking forward to TWO catheters. Dr. Ecker explained the risks and why they’d keep me over night as more of a precaution. If I was doing great after the whole thing I could potentially go home and not have to stay.

I said my good-bye’s to Dave and was wheeled into the radiology angiography suite. As usual, the teams assembled for every single angiogram I’ve had at Maine Medical Center are top notch and always make me feel comfortable and at ease. Even though I’ve gone through many of these, it’s still a nervous time.

They allowed me to request a music station on their Pandora internet radio that was piped into the suite. I chose 80’s Throwback music. As the doctor walked in he said the music was a step up from the morning sessions. I said “You’re welcome”.

So enough of the pleasantries and on to the drugs, please! I’ve always had some pretty good pain when the catheter in my groin is inserted and I always request a little extra something special. Thankfully, they complied and it wasn’t too bad. They also inserted the IV into my left arm to prepare for a catheter for the balloon occlusion test. That was a little painful as well, but it didn’t last long.

I know many people don’t understand why my groin hurts after having X-rays done on my brain. Aren’t they a tad far away from each other? Well, yes, but inserting a dye into that area gives a direct flight into the brain via one of the main cerebral arteries. I’m not sure why it’s going from the groin and not up higher on the body, such as the neck or chest, but it works, so I’m not going to question it.

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During the angiogram, they take a series of images of the arteries then inject a dye to see exactly where the blood is flowing and take another series of X-rays. When the dye is injected I see a series of small horizontal lightning strikes behind my left eye. It’s brief, but weird. I keep my eyes closed during the whole thing, mainly because I’m dopey and can’t see anything without my glasses anyway, but because there is usually part of the machine directly above my head and there isn’t anything to see anyway.

After the initial angiogram, Dr. Ecker compared images taken last year at this time with the ones he just took. He was able to pull them up on the screen side-by-side, then even overlap them. He indicated there was absolutely NO change from last year, which was great news. Then he was questioning if we should even go ahead with the balloon occlusion test at that point since nothing had changed.

The main reason we were going to do the balloon occlusion test in the first place was to see if my vascular setup could even handle such a reversal of blood flow should a I NEED to have something dramatic done to prevent more blood from getting into the brain aneurysm.

Since there didn’t appear to be any immediate need for that, based on this angiogram, we both decided to forgo the BOT this time. I was okay with that. I wasn’t looking forward to more pain, or an overnight stay. However, a part of me was disappointed we just didn’t do it and get it over with now so we’ll know down the road.

Because they had expected to do a lot more, the large team assembled for this big event wasn’t really needed now and the last thing remaining in the radiology suite was the dreaded “plug”, or Angio-Sealâ„¢. The angio-seal is a small device that basically closes up the puncture site in the groin. However, since he used a larger catheter for today’s procedure, that larger plug was needed. It can be quite painful, mainly because I’ve been “poked so many times” as he said. Lucky me!

Why, yes…it WAS painful and they had to tell me to calm down, relax, and keep my leg down. I did. Still hurt. LOL The UPSIDE of using the closure device is that I only have to lay flat in recovery for two hours, not four or more hours if they were simply to apply preasure to the site for 15 minutes. The angio-seal allows the bleeding to stop much more rapidly and a quicker discharge from the hospital So, that’s the trade off for the pain.

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The seal is comprised of three absorbable components: a small anchor, collagen, and a suture. The doctor guides the anchor through the hole created during the procedure where it is drawn in against the wall of the artery and the suture and collegian compact to create a secure seal over the entry point in the groin. All three components dissolve and are absorbed into my body in about 90 days. I’ll have an odd bump there for awhile, but the pain should ease after a few days.

The recovery in the radiology department is always long, but it seemed more so this time because they kind of forgot to offer me any food or water. It wasn’t until Dave asked them about an hour into my stay that I got a sandwich and some water. That’s highly unlike that crew and I was a little surprised.

Once they had me up on my feet for a short walking test and determined I wasn’t dizzy or unstable, I was discharged and walked out on my own. The only stop on the way home was at McDonalds for a shamrock shake! ‘Tis the season and it tasted sooooo good.

I developed quite a nasty headache on the ride home and was very glad we didn’t live any further than the 60 miles away we already did. The second I got in the door I had a cold cloth ready, heated my beanbag neck wrap, and crawled into bed for a good 7 hours. All the while keeping a pillow over my groin area so the cats wouldn’t jump directly on it. They did very good….been there, done that and I think they knew mommy wasn’t feeling well and cuddled with me all night.

My sleeping and eating pattern is all out of whack now and my groin is still giving me some pain. I’m pretty tired and not real stable. My head is going back and forth on whether it wants to bother me or not, but nothing I can’t handle. I’ve been in worse pain, been in worse condition, and I’m just lucky to be here.

However, there still is that lingering “issue”. Blood has gotten back into my original brain aneurysm and it’s still sitting there. Dr. Ecker wants me to get an MRA so we have a really good baseline image as it stands right now, then we’re hoping to just have MRA’s next time and not have to go through an angiogram as frequently. I’m all for that. Not that I enjoy MRA’s, but it’s far less invasive than angiograms, just loud and annoying. Then if they notice a change on an MRA, another angiogram will be ordered for a closer look.

I came away from this angiogram with mixed feelings. Yes, it’s great news that things hadn’t changed from last year, BUT there is still blood sitting there in the neck of a brain aneurysm that has already ruptured and we haven’t really resolved what to do with that. It’s almost a deja vu of last year. Something I guess I’ll still worry about until we see otherwise one way or the other. I don’t feel like I’m out of the woods yet from that pesky 11mm brain aneurysm. I should give it a name…any suggestions? (Keep it clean!)