Tag: brain aneurysm

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.

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!

The Good, The Bad, and The Tired

Published on by heiditeaLeave a comment

Tonight was my first time back to our brain aneurysm support group meeting since probably last September, possibly August. During catalog season I’m always working late and far too tired to go anywhere during the week. Ironically, fatigue and memory is a common theme at many of our meetings as it was tonight.

As always, it was good to see returning faces and I missed a few who weren’t there. We’re getting a nice “core” of survivors, care-givers, and those who have lost loved ones. The support is always there and we all try to listen to each other’s stories and offer validation for feelings and emotions that only those who have gone through the same thing can appreciate.

Unfortunately, I’ve had the brain aneurysm double-whammy; I myself, have suffered a ruptured brain aneurysm, and I have lost two loved ones to ruptures. I’ve seen both sides of the caregiving aspect, or those left behind, and I’ve also been a part of the survival and recovery part. Each part has struggles and pain.

Tonight, a father shared the story of the night his adult son’s brain aneurysm ruptured. It was a violent rupture and if he had been home alone, he would not have survived. His wife was able to revive him briefly – twice. He survived surgeries and a little bit of rehab and multiple rounds of different medications. He was at our meeting tonight while his father described the night it all happened to us. Even though his short-term memory has basically been lost, he cannot work or drive, and his family continues to endure a level of frustration and pain I cannot even begin to understand for several years now. But he IS alive, walking, talking, and able to function in some capacity.

Hearing a caregiver, and a father, talk about what happened that night, was difficult for me. My sister and Dave’s niece went through very similar experiences….or we can assume. My mind immediately raced to Dori’s rupture and how she lost consciousness on Mother’s Day and her husband was able to revive her while their 15-year old son called 911. But by that point it was too late. The damage from the rupture had already been done.

Then I thought about Kim, who was home alone when her rupture occurred. I can only hope and pray it was quick, but I also always wonder if someone had been there and found her sooner, if she’d be here today and if she were, what kind of life would she be living. The severity of her rupture and the location of it, leads me to believe Kim would not be the same person if she had survived. The same can be said for Dori.

We witnessed tonight the amazement in seeing a survivor of such a devastating rupture, but also the heart-wrenching pain in knowing their loved one will never be the same. That they can no long take care of themselves or their children. That they need major supervision. That they need to be reminded of things on an hourly basis to get through the day…yes, they DID survive, but in a sad way, they’re only a shell of the person they once were.

Is it only by the grace of God, that I am here today? Why did I survive and they did not? Why did I survive with very few deficits when others have continued issues and pain, even years after their ruptures?

I don’t like it when I come away from one of our meetings with these kind of questions. I should just be grateful and keep my mouth shut and never complain about anything, ever again. I AM one of the lucky ones…or one of the chosen ones…or just a person who was in the right place at the right time, with the right set of doctors. Fate? I don’t know.

I suppose those are all questions that will have to remain unanswered. Kind of like “Why doesn’t Fred Flinstone have horribly bloody feet when he has to stop his rock car with his heels?” Why? Why?

Two-Year Clip-Aversary

Published on by heiditea2 Comments

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.