I Am Lit

As I get prepared for my 2-year follow-up MRA this Friday, I was curious to see just how many angiograms and MRA/MRI’s my brain has had since 2006. Thankfully, I was able to get a pretty good handle on that number by simply searching this blog. I was surprised by the number…but not really.

CEREBRAL ANGIOGRAMS

I have had NINE cerebral angiograms which include three treatments that are performed using this same process: my initial coiling, then my stent placement, and recoiling were all performed using angiography.

A Cerebral angiography provides x-ray images of blood vessels in and around the brain, showing abnormalities like brain aneurysms.

PHOTO: John Hopkins Medicine

Typically a catheter is inserted into the femoral artery in the groin and threaded through the circulatory system to the carotid artery where contrast die is injected. A series of images are taken as the contrast agent spreads through the brain’s arterial system, then a second series as it reaches the venous system.

MRA/MRI

I have also had SEVEN MRA/MRI’s. Magnetic resonance angiography–also called a magnetic resonance angiogram or MRA–is a type of MRI that looks specifically at the body’s blood vessels. Unlike an angiogram, which requires inserting a catheter into the body, magnetic resonance angiography is a far less invasive and less painful test.


PHOTO: My brain bling via MRA imaging.

The frequency and type of follow-up procedures I receive hinge on the previous scan showed and what procedure was provided. We’re hoping I can continue just getting MRA’s, but if something unusual shows up, more angiograms may be needed. Angiograms are more invasive and risky, but they are the gold standard for getting the clearest images of my blood vessels.

I am blessed to have had such a great neuro team here in Maine and terrific health insurance coverage through work.

Here’s to more scanxiety.

Two-Year Checkup 2018

I had my two-year MRA last weekend. Another trip down to Scarborough. This time on a Saturday afternoon, which was unusual and nice. Less traffic and great parking! My choice of music was 80’s pop and the whole thing took less than 20 minutes. Bada bing, bada boom. They used a combo of ear plugs and then placed ear phones over that. So, the sound of the MRI machine was significantly muffled. Nice!

It’s amazing how your mind plays with your emotions during that period of waiting. Especially when a potential vacation could be derailed if things have changed dramatically and I was told not to fly. A lot was riding on my brain and it had been a longer stretch of time between checkups.

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So, today I finally got the results back and this report was good. Nothing had changed from two years ago and we’ll do it all again in two years. (2020!) I still have that remnant of blood getting in to the neck of my first brain aneurysm, but the fact it stayed the same is good. Do I think I’m free and clear of ever having any other issues? No, but for now…I’ll take it. And I’m glad I didn’t have to endure ANOTHER angiogram. I’ll have to go back and check out my blog to see just how many I have had since 2006.

I’m still a survivor.

Look out Scotland & Northern Ireland! Here we come!

SaveSave

Always There

At tonight’s brain aneurym support group meeting, I was reminded of the potential peril I may still be in.

My neurosurgeon/interventional radiologist gave a presentation about new treatments of cervix carotid artery brain aneurysms — aneurysms on the carotid artery in the neck. This was very relevant to one survivor in our group who has a 2nd aneurysm that is being watched right now in that sam area.

This report was originally given to neuro-medical doctors and was quite detailed with highly-medical terminology.  As explicit as it was, one was able to get the gist of it: they’re doing some pretty amazing things these days and saving lives.

The report was also funded by a research grant sponsored by our Maine Brain Aneurysm Awareness Committe, and Dr. Ecker explained how the money we gave was being used to purchase the detailed imagery needed for this paper. We are thrilled to be able to do it.

This presentation was about 30 minutes interspersed with questions from our group and Dr. Ecker giving us great explanations. Then a second, 10-15 minute presentation was given regarding his use of the pipeline procedure which is saving many, many lives and used more and more. I only wish it could be used with my case.

It was humbling of Dr. Ecker to admit that there are some aneurysms that are just trouble makers and that they can only do so much in some cases. Meaning, they’re still only human and one of their biggest challenges is the interaction between metallic fixtures and human biology with in the brain.

Some people just have such funky arteries due to vascular disease that the doctors can try and try to do everything they feel is right but due to the physical makeup of their arteries, it’s a challenge. I’m pretty sure I’m one of those challenges with my larger1st aneurysm.

Dr. Kwan, my doctor at the time in 2006, did the best he could at that time to fix my 1/2″ diameter brain aneurysm and save my life.  It worked…for five years until the 16 platinum coils inserted into the aneurysm started to compact and blood started to get back into the aneurysm.

Enter Dr. Ecker and the stent and four additional coils he added to my metal repertoire. This procedure went very well and everything looked great. Until more blood started getting into the neck of the aneurysm again and we are now watching it.

Because I already have a stent in that artery directing blood flow past the neck of the aneurysm, it’s highly unlikely and not recommended that using the pipeline will, or CAN be used to keep blood from getting back into the aneurysm.  And the research and reported procedures on putting a stent inside of another stent with similar conditions is non-existent. Hence…more waiting.

In the meantime, I live my life one day at the time hoping more blood isn’t getting into the neck and forming a bulge there that may, or may not rupture. I don’t have high blood pressure, I have never smoked, but I do have a highly stressful job for about 3-4 months of the year and I am not eating that great or exercising. From what I see, even if you ARE in great shape…if your arteries are “funky”, they’ll do what the want to – aneurysms really don’t discriminate.

Dr. Ecker and I have previously discussed options and they’re quite limited at the moment, but seeing the groundbreaking procedures that are being done in our very own state is giving me hope that a solution is in sight. I’d prefer NOT to be one of those challenges, but my arteries have other ideas.

I don’t think about it everyday, but certainly after a session like this, it’s the topmost thing on my mind and knowing there are doctors and a great staff here in the state of Maine is a comfort. I KNOW they’ll do their best and I KNOW they’ll give me the best advice and recommendations at their disposal. We are blessed to have such talented doctors in our state who are taking such good care of us. THANK YOU!

 

Happy 10th Annie-versary to Me!

Brain Aneurysm Survivor
My story in bullet points.

10 years ago today, my life changed when an 11mm (almost 1/2″ in size) brain aneurysm ruptured around 4:30 in the morning. Happy 10th Annie-versary to Me! That’s what brain aneurysm survivors call the anniversary of the day they found out they had a brain aneurysm, the day they had their surgery, or the day it ruptured. Each year a survivor is alive is a celebration and one that should be marked in some fashion. After losing my sister and my husband’s niece to sudden ruptured, and undetected brain aneurysms, I know all too well the horrific, and sudden toll this silent killer can take on families.

Last week I was lucky enough to take part in a brain aneurysm survivor’s breakfast in New York City leading up to the Cerebral Affair Gala that same night. Both events were hosted by two of the biggest players in the brain aneurysm awareness community: The Lisa Colagrossi Foundation and The Joe Niekro Foundation. As with our support group in Portland each month, the stories survivors tell are remarkable, heartbreaking, and inspiring all at the same time. Everyone’s story is different. Everyone’s brain aneurysm is different. And everyone’s struggle is different. However, we all share the same fears and anxiety that come with surviving. Why did I survive when countless other’s did not? Is the headache I have right now a symptom of another rupture? If I had one aneurysm, is it a certainty I’ll get another one?

Fellow Survivors & their Family Members
Some of the survivors & their family members who attended the survivors round-table and breakfast.

The survivor’s breakfast was a profound reminder of just how important it is that survivors tell their stories again and again to everyone and anyone who will listen. You never now when YOUR story will resonate with one person and one life could be saved.

I HAD heard the terms “brain aneurysm” prior to my rupture in 2006, but I had no idea it could be hereditary in some cases and I had no idea the damage it could do. I vaguely remember the ER doctor coming in and asking me if anyone in my family has a brain aneurysm. I THINK I may have said “yes” because my cousin Debbie had just gone through coiling a few years prior and I know my cousin Tim had suffered a rupture.

When the doctor said I had a ruptured brain aneurysm that was bleeding, I remember thinking “Well, that can’t be good.” I’m one of the lucky ones to even have any knowledge and memory of those events and discussions. For many, the damage with the initial rupture is too great to overcome. I am still able to work the job I left for six months to recover back in 2006. I am still able to drive. Many are not.

My deficits are embarrassingly minor compared to others. Fatigue lasted a LONG time. Maybe years. I was lucky enough to NOT have major headaches for long periods of time after my rupture but bending over at certain angles still causes discomfort. I can’t say it’s pain, but it isn’t pleasant. And coughing still causes discomfort and my brain can get easily over stimulated with visual or vocal clutter.

Because my rupture was coiled, I didn’t have any outward indication of surviving a brain injury unlike the craniotomy I endured in 2014 for a second un-ruptured brain aneurysm. I think that’s why people can assume you’re fine. Outwardly, you DO look fine, but inwardly, we are suffering and struggling and only another survivor can understand that.

The 2nd brain aneurysm I had was clipped and after my last angiogram, it appears to have completely gone away. The first one that ruptured 10 years ago this morning, is STILL giving me issues. The 16 platinum coils inserted into it started to compact after five years, then four more coils were added and a stent was inserted to allow the blood to flow PAST the aneurysm instead of into it. However, there is still a little remnant of blood between the neck and the stent. It’s the annie that won’t go away.

This is my BrainSome days I still struggle with the not knowing. I truly hate the “watch and wait” option. Been there, still doing that. But this bugger is not an “easy fix” at this point. If it starts to enlarge or change shape, more coils could be in order. Sure, why not! Let’s load me up with more metal. 20 coils, a stent, and a clip. My Brain Bling!

As I was reminded during the survivor’s breakfast last week in NYC, I need to remember how blessed I am and that I should continue to be grateful. I AM grateful and I know I am blessed, but I have also been devastated by brain aneurysms in losing my sister, leaving a 15-year old son behind. I’m devastated by Dave’s niece Kim dying at the far-too young age of 32 and being found by her mother. No one should have to endure that and it broke my heart.

If my long, often soap-boxy blog can help just one person and educate anyone about brain aneurysms, then I am doing something right. I am doing something positive and I am doing SOMETHING to help shed light on the deadly consequences of ignoring symptoms that could kill you or a loved one.

I suppose God left ME here to be one of the voices for those who aren’t with us anymore. It is my honor to do so.

Me! Brain Aneurysm Survivor

Thank you to all of those people who supported me during that time I was in the hospital 10 years ago and the following months of initial recovery. I couldn’t have done any of it without my Maine man, however. He’s my rock, my chauffeur, my nurse, my sounding board, and my love. I am blessed to have had him in my life 10 years ago to help save me.

Learn about brain aneurysms and spread the word! Symptoms of a Brain Aneurysm