Category: Doctor

Photo Shoot & Angiogram Follow Up

Published on by heiditeaLeave a comment

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.

image
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-Seal™. 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.

image
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!)

 

The Continuing Adventures of an 11mm Brain Aneurysm

Published on by heiditea2 Comments

In our last episode of The Adventures of an 11mm Brain Aneurysm, our pesky friend was allowing what appeared to be more blood into the neck of the aneurysm. After 16 platinum coils were inserted in 2006, then four more coils and even a stent were inserted in 2011, blood continues to find its way into the 1/2″ diameter aneurysm that almost cost me my life in 2006.

When we met with Dr. Ecker last year, I made the decision to wait another year and see how things looked. Well, the time to have a look is near.

On March 2nd, I will have an angiogram to see if that area on the neck of the aneurysm has changed or not. It might look the same, or there might be more blood accumulating and action would need to be taken since it is an aneurysm that has already ruptured once.

I’m used to the angiograms. I’ve had so many since 2006. I know many of the radiology folks at Maine Medical Center now. They’re great, but I do wish I didn’t have to see them so frequently.

Balloon Occlusion Test
Balloon Occclusion Test

However, during this year’s angiogram, I will also be given the balloon occlusion test I talked about in last year’s post. They test to see if my arteries can handle reversing the blood flow in that area in case they have to perform a bypass where the parent artery must be sacrificed and the blood flow bypassed for the aneurysm to be effectively treated. I got into a little more detail on last year’s post. Until I know we’ll NEED to do that procedure, I won’t get any more detailed just yet.

The first two steps are to get some pictures of the aneurysm, then see if I can handle the blood flow being cut off to that part of the brain. Sounds scary….and yes, I am scared, but I’d rather have it looked at and know what I have to deal with. It will mean an overnight stay in the hospital which I wasn’t planning on, but if I only have to stay one night, I can handle that.

That pesky, original brain aneurysm continues to taunt me and remind me of the fragility of life and the struggles many, many people have to go through when dealing with brain aneurysms.

Stay tuned for the continuing Adventures of an 11mm Brain Aneurysm!

Balloons, Brains, and Bravery

Published on by heiditea4 Comments

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.

Hot Air Balloon
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 Awareness tent 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!

DSCN1308
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!