11-Month Update

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

8 Years And Counting

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.

Stop and Visit

Each year of our KAT-Walk and Karo-5K I have been at the tent representing the Maine Brain Aneurysm Awareness committee, only leaving it to help other volunteers if needed or if I am participating in the walk itself. Before, during, and after the event, we try to provide people with support, information, and education about brain aneurysms.

SURVIVORS:
If you’re a survivor, like I am, we encourage you to make yourself known at the event by stopping by our tent to say “hello” and to sign in. Each year we’re very encouraged to meet new survivors as well as those who survived an aneurysm many years ago and choose our event to celebrate the fact they survived. We are also very aware some survivors don’t want to draw attention to themselves or make a ‘big deal” out of it, but it IS a big deal. Brain aneurysms kill too many and if you survived a rupture or were lucky enough to have your aneurysm treated before it ruptures, then you’re very worthy of attention at our event.

Please stop by, say “hello”, and sign in. Not only is it a wonderful feeling to know you’re not alone, but seeing, and getting to know another survivor can give newly diagnosed or treated survivors a tremendous amount of encouragement and comfort.

NEWLY DIAGNOSED
As our Brain Aneurysm Support group continues to draw new members, we’re also very aware there may be patients who have been newly diagnosed with a brain aneurysm. Hearing those words can be extremely frightening, especially if one has no idea what an aneurysm is. It’s only AFTER you’ve been diagnosed and seen at the doctor’s office that the questions seem to present themselves.

At our Brain Aneurysm Awareness tent we can provide you with informational booklets and brochures to help you on your journey. The types of brain aneurysms, different treatments, and what to expect after treatments are all part of the learning process when you begin your brain aneurysm journey.

Also at the tent you’ll meet other survivors who can help answer some of your non-medical questions and hopefully ease some of your fears.

THE WALL OF HONOR
Two years ago we started the Wall of Honor where families can place the name of a loved one who has been lost to an aneurysm or the name of a survivor.

If we are aware a survivor is registered for the walk or run, we try to have their name pre-printed and placed on the wall prior to the event, but each year we meet new survivors and we welcome you to visit the tent, write your name on one of the colorful sneaker stickers, and place your name on the board. You survived…you deserve a place of honor.

Wall of Honor

If you’ve been unfortunate to have lost a loved one or friend to a ruptured brain aneurysm, we also welcome and encourage you to remember them with a place on our wall. As with the survivors, if we know family members of one who was lost are registered for the walk or run, we try to honor their memory with a pre-printed sneaker sticker on the board, but if you’re new to the walk and want to honor your lost loved one, please stop by the tent, write their name on a sneaker sticker and proudly place it on the wall to honor their memory.

We try to keep it to one sneaker per survivor or loved one. If the name you’re looking for is already ON the board, we have seen other family members and friends taking pictures with the sneaker with their name on it. The Wall of Honor has become an emotional place for some and a proud place for others. A true brain aneurysm community develops on the day of the event and it gives one hope, comfort, and encouragement.

 

SUPPORT COMMUNITY
Next to our Brain Aneurysm Awareness tent we will have a tent set up for the Maine Brain Aneurysm Support Group.  For those who are unable to participate in the events, we welcome you to rest here and enjoy the festivities with other survivors and family members.

 

I Remember

As my six month anniversary of my brain aneurysm clipping arrives, I ran across the notes I took at my first followup appointment with the surgeon. I scribbled that the “bone has to heal”. I keep forgetting the bone will heal around the screws and plates holding the bone flap secure. The last several weeks, I have “felt” my brain/head/nerves when I lay at a flatter level in bed. It’s not painful, it’s just not a pleasant sensation. So I have added another pillow and that helps.

On Neurosurgery.com from Australia, there was this question: Does the bone heal back into the skull?  In most cases yes, but in some people it can re-absorb to a degree then you will have a depression in your skull.

I must be one of the “some people” statistic. I notice the depression and can feel it and Dave has noticed it, but unless I point it out to people I don’t think they know it’s there. So I should stop pointing it out, right? LOL Hey, I had a hole cut into my head and 53 stitches. It MAY just leave a scar, right?

I know things are continuing to heal. The scalp is still numb, but it appears to be getting some feeling back now. My short strands of hair that were shaved at the incision are now growing a tick longer and annoying the hell out of me! We’ll see if I can hold out one more month then get it all cut short for the rest of the summer.

I THINK I’m starting to get some energy back. Granted, I haven’t really DONE much of anything. I’m getting chubby, but I’m rested. That’s good isn’t it? I’m up for a full physical next week and have to get some lab work done this week. We’ll see how my numbers look.

Overall I’m doing well. I’m listening to my body and when I need to sleep, I sleep. At least I try to. The main reason I had this procedure done was so I can continue living and that’s what I’m trying to do…one month at a time. I must remember I am still recovering and must remember my head/skull/brain is still healing. My brain bling is firmly in place.