Category: Milestones

Celebrating My Brain Bling – Year 1

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Sung to the tune of “The Twelve Days of Christmas” starting with the 4th day….

“On the 17th of January my neurosurgeon gave to me:

  • 53 dissolving sutures
  • several plates and screws
  • one titanium clip
  • and a dent in the side of my head.”

Yep…that’s what happened a year ago today when I had my 2nd brain aneurysm surgically clipped. It hadn’t ruptured, which was a far different situation from my other aneurysm rupturing in 2006. This second aneurysm, although a riskier procedure, was more of a preventative. Because I’m susceptible to ruptures, lost my sister Dori to a ruptured brain aneurysm that was about the same size, and this second one was starting to grow, everyone felt it was in my best interested to go ahead with the procedure. Get the darn thing before it got me.

Now, don’t get me wrong…the decision was not an easy one and one I didn’t take lightly. Not only did I know the risks going in, but I also knew how the decision and any possible bad outcome would effect my family. That being said, once I DID make the decision, it was “LET’S DO THIS!”. I wanted it done sooner, rather than later, but my work schedule prevented a quicker date with the surgeons.

Having a doctor who you have confidence in and who has been inside your brain before was a huge plus. He didn’t force me to have the surgery. I could have waited if I wanted to, but I think we both knew my specific risk factors were significant enough to have the surgery. I already have 20 coils and one stent in the other brain aneurysm – what’s one more tiny clip and a few pins and screws?

I won’t go through the minutia of the surgery again as it has already been well documented in this blog, but I’m doing well. I still have issues with fatigue, my scalp feeling numb and odd aches and pains on my skull from time to time when I got overly tired or for other reasons I have yet to determine. Open brain surgery is very scary and certainly risky. I’m one of the lucky ones. Even with the dent and bumps in my head, the alternative is worse for everyone in my life.

Me! Brain Aneurysm Survivor
I have a “Brain Aneurysm Survivor” sweatshirt that I wear occasionally. Some people might find that self-promotion a little tacky. If a breast cancer survivor walked by me with a shirt saying ‘Breast Cancer Survivor”, I’d give them a thumbs up, perhaps a hug, and certainly congratulate them. I don’t EXPECT any response when I wear my sweatshirt, but it’s something I’m proud of and if it initiates a conversation with someone who may not have a lot of knowledge of brain aneurysms, perhaps I can even save a darn life.

So, on today’s 1st anniversary of my newly acquired brain bling, I don’t know what to call it. My previous anniversaries I have call my “annie-versary”. Annie for aneurysm…get it? But what does one call the clipping anniversary. A clip-aversary? A craniot-iversary? A bling-aversary? I guess I’ll just called it “a year out” and wear my “Brain Aneurysm Survivor” sweatshirt to work.

 

11-Month Update

Published on by heiditeaLeave a comment

I realized I haven’t given much of an update on how my brain aneurysm is doing for many months. My 2nd aneurysm was clipped 11 months ago.

Physically, the hair has all grown back and didn’t ALL come back in gray, but certainly one streak snuck it’s way through. A few blonde highlights helped cover that up temporarily.

The incision where the skin was pulled back, then replaced and sown on with 53 stitches is almost non-existent. I say “almost” because there are still some dry, itchy spots directly along the incision cut that’ll flare up occasionally.

I do still have quite a good chunk of my scalp that doesn’t have much feeling and some nights it’s uncomfortable to lay on the left side of my face and head still. I haven’t been able to determine what triggers that uncomfortable feeling yet. But I certainly feel it and know that the brain bling, the bone plate and screws are there and making their presence known.

A good indentation has now become more pronounced where the piece of skull was removed the replaced, however. I can cover it up with my bangs for the most part, but I know it’s there and I’m a tad self-conscious about it. I don’t know why I feel that way….I should be proud of my battle scars and brain bling.

I believe I’m supposed to have a follow-up angiogram in January and I’m looking forward to finally seeing the images of the clip and it’s location. And hopefully everything will look good with the clip as well as the other, older, clip-filled aneurysm and they don’t locate any others.

I’m so ready to kick the year 2014 in the arse and kiss it goodbye.

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Still looks better than it did 11 months ago below

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Post-surgery. Yikes!

The day after craniotomy & brain aneurysm clipping

The 9-Month Update

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It has been awhile since I gave an update on my noggin. I’ve been very busy, very tired, and very tired. Now, none of that is highly unusual for this time of year. It is catalog time which usually means it’s very busy and I’m very tired…It just usually isn’t on top of brain surgery 9 months prior.

I’ve been a very bad patient too. I haven’t eaten well. I don’t exercise and I’m not giving myself enough breaks from the computer during the day. It’s no wonder I’m tired, cranky and head-achey. It’s the nature of the beast this time of year, but there are some new aches and pains around my head and skull that annoy.

My scalp is still numb over a large chunk of my skull. I’ve started to get used to it I guess. It’s still odd, but isn’t anything painful, so that’s good. I do get odd pains in and around the incision area and where the skin would have been pealed back from the skull. Not sure what triggers it or how to make it feel better. Usually resting does it…and yes, I haven’t done enough of that either. Why do I do it? Life is too short….I guess I’m just one of those human beings who feels responsible for my job. I have a major deadline to meet and I haven’t missed it once in the last 13 years. Well, I can’t remember if they got the files to the printer on time the year my other brain aneurysm ruptured, but I wasn’t exactly “aware” at that time.

Chocolate is my friend this time of year. It’s what “sustains” us! LOL The extreme comfort food…any time of the day.

Adding to the stress of uneasiness about my frame of mind and stamina this time of year is that my mother was in the hospital back in NY and is now in a rehab center. I haven’t seen her at all. I don’t dare take any time off this time of year. I hope to get to NY as soon as I can after the catalog has been printed and I can settle back into a normal routine at work. I feel horrible not being there for her and my niece, who is handling everything for mom by herself. Thankfully, Mom appears to be doing okay and is in good spirits which helps. She’s a tough old bird at 88 and seems to be enjoying some of the new people she has met.

Dave, as usual, has had to deal with my many moods, mood swings, and horrible meals this time of year. Usually the months of September (because of the Maine Brain Aneurysm Walk/Run) and October (catalog) are filled with junk food and fatigue. Then Dave just broke two ribs last weekend, so he’s not doing well himself! We’re a great pair. I’m calling him “short ribs”. 🙂 Thank God I have such a wonderful husband who allows me to be ticked off, vent, and generally will leave me alone when I need to be during this time. He never complains. How DID I get so lucky?

Last year at this time I was keeping the fact I was going to have a craniotomy the next January a secret from my co-workers until the catalog was completed. All that time I was able to “plan” my schedule around my surgery and make sure I had things in order and had people lined up to assist while I was out. I suppose that’s one of the GOOD things about knowing you’ll have surgery on a brain aneurysm instead of a sudden, emergency situation: you can plan! And I’m also urging people to be scanned and go to the Dr. if they’re experiencing any of the symptoms of a brain aneurysm.

My niece was scanned this summer and by the grace of God, everything looked fine. Even if they had found something, I know from personal experience, it’s not a death sentence. There ARE treatments out there and there ARE things that can be done to save a life. I’m LIVING proof of that! Just taking it one day at a time and “playing it by ear” as my family says.

8 Years And Counting

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20141004-230625.jpgI say it every year around this time but Happy Annie-versary to me! 8 years ago today I suffered a ruptured brain aneurysm at home. I believe I was guided by God’s hand to go into the ER when I did. I KNEW it was something I had never experienced before and wanted to get it checked out because it scared me. I was only vaguely aware of the term aneurysm because a cousin had one coiled a few years earlier. I had no idea just how serious it was for her and just how my life, and my family’s life, would be changed.

No, I wasn’t sent to Boston for my surgery. My particular aneurysm was a good candidate for the relatively new procedure called coiling. What I know NOW, but didn’t know then, is that the rather large, 1/2″ diameter brain aneurysm is actually sitting on my optic nerve and the head of neurology was nervous about doing the more invasive procedure of a craniotomy and clipping (which I just went through with my un-ruptured aneurysm). Thankfully the staff right here in Maine at Maine Medical Center were more than capable of handling that procedure and are now in 2014 even MORE prepared to handle all of the new treatments available.

16 coils and four additional coils, a stent, a craniotomy, and now a metal clip, and here I still am. It was a frustrating recovery in 2006 and I am now meeting, and hopefully assisting, recent survivors at our brain aneurysm support group. We’re all lucky. We survived.

I’ve given up asking “why did I survive” and why didn’t Dave’s niece Kim or my sister Dori survive their ruptures. There is no answer. God had other plans I guess.

I mentioned to my mother earlier in the week that I had finished the first round of layouts for the ENTIRE catalog for next year’s book. Ironically, 8 years ago, I remembered celebrating that milestone and one or two days later, the brain aneurysm ruptured. I’m still working just as hard, still stressing just as much, but a little bit more tired this year because my UN-ruptured brain aneurysm was clipped in January. One of the side effects from THAT surgery is when I’m overly tired, my left eye lid gets droopy and even though it doesn’t look it, I feel like my brain and skull are swollen when I’ve worked too hard. Yes, I still push myself. It’s my job, it’s my responsibility. I do have limits though….you’d think I would have learned that 8 years ago. LOL

I still don’t eat as well as I should and I don’t get enough exercise. Perhaps that part of my brain that activates motivation has changed. Who knows, but I’m here. No special celebration today, just making home made chili in the crockpot, working on the catalog (yes, on the weekend!) and hanging out with my Maine Man and my kitty cats. That’s more than I was doing eight years ago in ICU.

If I’m able to help any other survivors and help spread the word about the symptoms and treatments of these silent killers, then I’m hopefully turning something bad into a more positive thing. There are days I don’t want to talk about brain aneurysms. There are days I don’t want to think about them, but I can’t get away from them. That’s the sad truth. So, I’m trying to make the best of it and try to help others LIVE in whatever way they’re able to. They are a part of my everyday living.

For those of you still struggling, you’re not alone and things will get better with time. Just treat yourself right, enjoy life, and celebrate the people around you. You just never know.

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Photo taken on my first walk outside after craniotomy in January this year.