Tag: medical procedures

Seize The Day?

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The Latin saying Carpe diem means seize the day or live each day to the fullest.

Do I Carpe diem? If I’m honest, no I don’t. Being a double brain aneurysm survivor, I SHOULD seize each day, but I don’t. Am I grateful? Of course, I am.  Do I wake up each morning and think “I am so grateful and blessed to be here”? No, I do not. I should…but I don’t. And those people who say they DO wake up each morning and actually think about how blessed they are, the skeptic in me thinks, “Really?”

MY first thoughts every morning are that I’m very tired, or my back or head aches, or that I slept far too long on my left side, which is a bad thing because of where my craniotomy is. No, my first thought usually isn’t how grateful I am.

I wish I could live each day to it’s fullest and feel grateful every day. Although I am one of the fortunate ones who still can, I need to work to pay the bills and secure good health insurance. I think more about those things. And I do more work than Carping that diem.

What I DO think about every day is brain aneurysms. How can I not? I think about my own aneurysms and the issues I still face. I think about the paths people’s lives, not just mine, have been forced to take as a result of brain aneurysms.

The parents who has lost a child. The husband who has lost a wife. The child who has lost a mother.  All of those people I have met and they are a part of my life now due to our shared experiences of losing a loved one to a brain aneurysm.

Brain aneurysm survivors are also a part of my life. We share a bond. We share our fears. We share our frustrations and scars with one another.

I’m not crazy about the month of October, so I’m always happy when I make it through the month. It’s VERY stressful at work in October and my family history has many sad occasions and memories that have happened in October. I suppose I should be grateful the month goes by in a snap…suddenly it’s November. It’s cold. All of the colorful leaves have fallen off the trees. One of these years, I WILL get to the mountains of Maine, stay in a hill-top cabin and view the fall foliage. Something I have yet to do since moving here in 2000.

September is the month when I FEEL the most grateful for being alive and being able to share my brain aneurysm story and help anyone I can. It’s the month chosen for our annual walk and run to honor the lives of two beautiful young women taken far too soon by ruptured brain aneurysms.

Then that pesky cynic within me thinks…I’m pretty sure no one I know would have organized a walk or run in MY honor. That’s how loved and adored these two young women were and how many friends they had. I couldn’t even get one person to visit me at home during both of my recovery periods….which were 6 and 3 months respectively. Yeah…I’m pretty sure I would have still remained just part of the statistics had I not survived. Which makes MY survival even more difficult to take. Why did these two young, vibrant, popular women have to die and I’m still here? I guess it’s to share my story and theirs. Lucky me? I’m grateful? Yeah…sometime’s it’s very difficult to feel that.

BEING grateful every day is a given in my case. If I wake up…yeah, that’s good! FEELING grateful is a whole other animal and it hits me at moments, rather than an every day thought.

I remember feeling grateful at the end of October when my devoted husband and I pulled into the driveway after two weeks in the hospital after my rupture in 2006. Although I wouldn’t return to work for another six months, it was a relief to be home. I was grateful to see the inside of the house I had come to love and to pet my kitty cats again.

I was overcome with emotion that following spring when I walked out to my garden for the first time and it hit me that things were starting to come alive again, as they do every year and that I was grateful, lucky, and blessed to be able to see my garden again. To smell the wet soil. Feel the wind on my face. Yes….I WAS grateful and very emotional as a result. It could have all ended in early October for me.

I feel grateful every September during our annual photograph of brain aneurysm survivors at the KAT-Walk & Karo-5k. I am grateful to be alive and to share this photo with other survivors from all over the state of Maine, New England and the country. I FEEL those moments tremendously.

It’s far too easy to assume someone who survived a life-threatening illness or medical emergency is grateful and lives each day to the fullest. Many don’t have the luxury to do so. Many have such horrible deficits that just living each hour is a struggle. Do they have time or the capacity to even THINK about being grateful? I doubt it.

Without even knowing it, I do believe I am grateful on a daily basis. I can rattle off a list of the things I am grateful for. It’s that seizing the day thing I still have to work on. I’m very tired.

 

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.

The Continuing Adventures of an 11mm Brain Aneurysm

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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!

Two-Year Clip-Aversary

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Me! Brain Aneurysm Survivor
On the anniversary of my ruptured brain aneurysm in 2006 and subsequent coiling, I call it my “Annie-versary” stealing the phrase from other survivors from the Brain Talk Community online who helped me through my recovery. For some reason I feel I need to give my 2nd brain aneurysm procedure (the clipping) a different annual name. Like I’ll be criticized for calling that an Annie-versary too? LOL I doubt it, but I do.

Saturday is the two-year anniversary of the clipping on my second, unruptured brain aneurysm. It turned out to be a delicate aneurysm and it was a delicate time. I had lost my other sister just a few weeks prior to my scheduled surgery and I was wrestling with whether I should go through with the surgery or not. It wasn’t until my niece and mother (who we lost last year) spoke to me and encouraged me to proceed, that I made the final decision to keep the date and proceed. I truly didn’t want to put them through anymore.

I think some angels were watching over me because it was a good thing I DID get the craniotomy & clipping. It was an ugly, thin-walled brain aneurysm that would have surely caused me issues, if not caused my death, at some point down the road.

For my two-year update I’ll recall an earlier format I used to update my family and a few friends on my blog about my recovery process.

FATIGUE: There are still days I KNOW my brain had too much stimulation. It’s difficult to describe other than my brain is tired. I suppose that is something that will never go away. It does get better, but I’ll be able to realize when I need to rest my brain. Not just sleep, but do nothing…think about nothing…just nothing. I need those days still. I also notice my left eye lid will get a bit droopy when I’m overly tired and haven’t eaten much.

PAIN: 
These days, the only pain I feel that is associated directly to the clipping is on the left side of my skull. I have no idea what triggers the pain and I often have difficulty laying on the left side of my head. It “feels” like my brain shifts to the left against my skull and there is pressure there. It’s not a daily pain, but I certainly notice it when it is bothering me and I have to roll over and lay on the right side. Sneezing doesn’t bother me, but coughing really does. I feel it throughout my head and it makes me tired.

NUMBNESS:
 As many people said, including the Dr., this may or may not go away. The skin on my skull hasn’t completely “reconnected” all of the nerves, so a great chunk of it is still numb. I only notice it when others touch my head now. My hair dresser or Dave. At least it’s not painful….just odd. I certainly could have worse issues, so I consider myself lucky.

STITCHES/INCISION:
 I can feel the incision under my hair line and the hair has all grown back so that part isn’t even visible anymore. As the swelling went down and I lost a little bit of weight (20 lbs at one point), the bone flap area “settled” into the skull quite a bit and a dent has appeared. The pins and small plates that secured the bone flap back onto the skull area are also visible and sticking out under the skin on the skull and I most certainly feel them. I’m not crazy about the dent or the brain “bling”, but it is what it is and I doubt anyone but me would really notice them. Although when I have my hair parted differently and the light hits it just right, Dave will notice and always points it out. I’ve seen much worse dents on other survivors I have met, so in comparison, I’m lucky.

Found this great PDF: https://profiles.utsouthwestern.edu/profile/67812/assets/patient-information.pdf

And this one: http://www.mayfieldclinic.com/PE-Craniotomy.htm

BRAIN FUNCTION:
Well, I have survived two more catalog seasons, so I guess my brain function is doing okay. I certainly feel tired at times, but I’m very, VERY lucky that I can drive, work, read, and function on a daily basis. I’m a little slower and a little more careful when walking and traversing walkways, hills or paths because I have a bit of a fear of slipping or falling and hitting my head.

I do still struggle with some survivor’s guilt. Why, dear Lord, am I so lucky with my multiple brain aneurysms when two (and possibly three) people I loved so much were victims of the same ailment? One can say because God has other plans for me to help others. If that’s the burden I have to carry, then so be it. I can’t say I’m crazy about it though. I’d rather have Kim, Dori, my mom and Rhonda back.

So, I will celebrate my clip-aversary in some fashion I’m sure. I’m glad I’m still here and I hope a few others are as well.