Cerebral Angiogram #10

That’s right. I’ve had 10 angiograms. I’m so well-versed on this procedure that the nurse said I could do my own IV Friday morning. I respectfully declined and left the experts to attend to that task.

The procedure was rescheduled for very early in the morning. We had to be at the hospital at 6:30 am, which meant leaving our house at 5 am…which in turn meant the alarm went off at 4 am. I call that the pre-butt-crack of dawn.

As usual the entire staff in radiology at Maine Medical Center is top-notch and I was well taken care of. The only different this time from the last 9 angiograms is that Dave was not allowed in the hospital due to the high numbers of Covid19 STILL active in Maine.

It was very difficult for Dave to not be with me and it was very odd not having him with me. He’s usually a chatty-Kathy with all of the nurses, doctors, and attendants and that creates a good distraction for me. This time it was just me laying there by myself waiting for things to happen. Not awful, just odd. And of course, my thoughts went to those families around the country and around the world who weren’t able to be with their dying relatives and how awful that must have been and continues to be.

My sweet anesthesiologist Ally (not sure about the spelling) was great in listening to me when I expressed my concerns about pain when the catheter is inserted and afterwards if a plug is needed in the incision site. Thankfully, because this was just a diagnostic procedure and there were no implements being entered into my brain, the plug was not needed. And because she administered some pain killer before the catheter was used I never felt it going in and didn’t even realize the actual procedure had started! That’s a first!

I kept waiting for some verbal communication that the catheter was being used and things were getting started, but it never happened. I moved my head slightly, which is a big no-no and the doctor immediately said “Don’t move you head, Heidi!”. It was only then that I realized, “Oh, things have started!”.

The reason for this angiogram was to get a clearer set of images of my first brain aneurysm and determine if the change seen on the MRA from December is dramatic or something small that isn’t a concern right now. He also took some 3D images, which are fascinating to see and can be compared to the series of images taken in 2015.

The contrast dye entering your brain is an odd and uncomfortable feeling. Kind of painful, but not really and it only last a brief time. The 3D imaging is also odd. Not really painful, just a strange sensation and you see little flashing sparkles. At least I think that was the 3D…I may be confusing the dye and the 3D. Hey, I was a little drugged. Both experiences are strange, but thankfully brief.

The good news during the procedure was the declaration from Dr. Ecker that he had a good look around everywhere else and there were no NEW brain aneurysm. Yes, that’s great news! But I was still concerned about the problem child and he quickly indicated that he really wanted to compare the images taken today with those from 2015 before giving us any kind of indication about what’s going on.

My post-op recovery from the angiogram went very well, with no issues. Again, the nursing staff are terrific. One has to lay flat for at least two-hours afterwards to give the incision site time to heal and for the team to make sure there are no issues with blood flow. I don’t recall so much attention being paid to the pulse in my feet before. I know it’s been done before, but it just seemed really extensive this time with two black marks being drawn on each foot, that are still not coming off two days later.

Post-op was strange without Dave there to grab my purse and cut my sandwich…grab water for me, help me balance to put on my socks, etc. The nurses were very helpful as usual and they grabbed my cell phone out of my purse for me so I could send Dave a photo and a text to let him know I was doing okay and when he could meet me outside to go home.

Because I don’t know what’s going on yet, I can’t report much today. The doctor did call Dave afterwards and indicated once he compares images, he may be contacting other doctors he knows around the world to discuss putting a modern stent inside an older stent. It’s not that common, but it has been done and he wants to get their input. I respect that and glad he has some terrific colleagues out there from around the world to draw on their expertise.

Dave also said he told him the artery where my brain aneurysm is, is a challenge due to it’s shape and form. Goody. I know Dr. Ecker has spoken about doing some kind of bi-pass basically shutting down that section of the artery if blood flow can continue to flow normally without it. That would need a BOT or balloon occlusion test….something we were going to do many years ago, but decided not to. It may be needed now. I just don’t know yet.

We got home from the hospital about mid-afternoon and I was exhausted. I lay on the couch resting my leg and fell asleep many times. Also drank a lot of water to get the contrast dye and the happy meds out of my body. I had a slight headache for a day and a half, and the incision site on my groin was a little sore. They must have had to pinch my skin, as a lovely black & blue mark developed well below the site. It’s a little sore, but already feeling better. Still not exerting myself too much and taking it easy for another day. I’m an expert at that.

So, I sit and wait for word. This isn’t anything new for me, and that’s frustrating because this same aneurysm is still being an issue 15 years later. I’m hopeful recent medical technology and procedures can assist in making a more permanent resolution.

In the meantime, I continue to LIVE with brain aneurysms. Stay tuned and thanks for the kind thoughts and prayers I have received on social media.

Angiogram #10

My follow-up cerebral angiogram has been rescheduled for this Friday, January 28th. This will be my 10th angiogram. Light me up!

The angiogram will give my doctor a clearer view of what’s happening within the neck of my first brain aneurysm. His notes after my last visited stated: “She presents a challenge as she has a stent/coiled aneurysm with recurrence.” And the desired treatment he’d like to perform is also a challenge due to the stent. Goody! So glad I could be that special case again.

So, we get the angiogram done and go from there. Keep calm and carry on…or something like that.

15 Years and Counting

15 years ago today my first brain aneurysm ruptured. The previous day, I had just finished the initial layout for the entire catalog. What a huge relief to finally know it would all fit after a stressful five months. I still had a great deal of work to do yet on the catalog, but my brain had other ideas on that chilly October morning.

I am still around today for several reasons:

  • My bleed didn’t kill me instantly
  • I listened to my own body and had Dave take me to the ER
  • The quick work of the attending physician at Maine General who immediately sent me in for a CT scan where the blood on my brain was detected
  • The high-speed and safe driving of the EMT ambulance squad who got me to Maine Medical Center in record time
  • The skilled hands and eyes of Dr. Eddie Kwan who performed the endovascular coiling on my 1/2” brain aneurysm the next morning
  • The compassionate, and hard-working nursing staff at Maine Med who attended to me for 21 days
  • The many prayers from my family and friends
  • My Maine man, whose constant care and attention gave me the strength to get up each morning

Dave, my rock, my constant companion for over 20 years. I am so fortunate that I was discovered on AOL by this GOOD MAN in 1998. Not only am I amazed, blessed, and thankful by the care he provided ME while in the hospital and in recovery, but also by the time and attention he pays to other survivors we have met over the years. The world, and MY world, is a better place because of you, Dave. THANK YOU!

Brain aneurysms don’t discriminate and my story isn’t unique. There are thousands of people just like me around the world. Brain aneurysms don’t care how old you are. They don’t care what race, gender, political leanings, or financial situation you are in. A ruptured brain aneurysm can happen to anyone.

Although I started sharing my story on https://heidisbrainblog.com as a way to keep my family and friends updated on my recovery, it became a therapy of sorts to fight my way back, relearn the computer, hand-eye coordination, and connect with others going through the same thing.

It was wonderful to discover I was not alone and others were going through very similar struggles. I’m so thankful to the other survivors I have met over the years. Each of their stories have touched me and given me strength.

I am not a glorious survivor. I haven’t run marathons to prove my incredible physical strength, or started podcasts proclaiming a new-found energy and awareness for life. I haven’t shown the world my face on tons of YouTube videos (okay, I have a couple out there) or written a book, but I am surviving every day….and I think that’s pretty damn good.

15 years…and counting! Happy annie-versary to me.

Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.