Tag: brain aneurysm

Stop and Visit

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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

Published on by heiditea2 Comments

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.

Chatty Cathy

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We had another brain aneurysm support group meeting in Portland. The turnout was not as good as in previous months and we’re sure it’s because of the beautiful weather we were having. There were only two of us for quite some time, then we learned the speaker had to cancel due to a death in the family. Now what?

Finally a few more people showed up and a decision to simply have an open forum of discussion was agreed upon. There were 21 at last month’s meeting and this month was about half that at 11. There were four survivors and 3 care givers, two mental health care givers, Dave’s sister Nancy, our own medical person from the hospital and a reporter. I knew there was a possibility the reporter would be there to write a story, so we were very pleased when a few more people showed up.

As it turns out, it was probably one of the best group sessions the reporter could have attended because there WASN’T a speaker. We spoke freely, asked questions of one another and shared frustrations, fears, and our collective “brain bling” because the four survivors in the group were craniotomy & clipping recipients. It was a wonderful hour and 15 minutes of sharing and in some cases educational for a few.

I seemed to think I was overly talkative when I thought about it afterwards. I think because the reporter WAS there, I wanted to make sure some of the efforts of our group and our events were brought to attention as well as some of my own personal experience. And perhaps I did a bit too much. Probably the reason the reporter never spoke to me personally about my experience…I blabbed about it the whole meeting. LOL I was the only one she didn’t seem to speak with afterwards. I guess I gave her enough info…and then some, or my story just wasn’t that intriguing.

It was nice to speak up and out. I don’t get the opportunity very much, other than in this blog, and I never know who is, and isn’t reading my blog because they rarely make themselves known to me. I enjoyed knowing I could speak freely and have people understand some of what I was talking about. I hope I didn’t do too much or interrupt. Listening is the most important thing you can do at a support group meeting. It’s why we’re there…to lend support and allow people to speak. I just spoke…and spoke…and spoke. So I apologize if I ran over anyone. Chatty Cathy can be powerful!

Gravity

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Since my craniotomy brain aneurysm clipping surgery in January, I have slept at an angle with a large, decorative pillow behind my regular pillow. I decided to try sleeping with a regular one instead and realized I guess I can’t sleep that low. I was kind of surprised.

I had trouble getting to sleep the other night. My skull was “acting up”. I have yet to find the correct word to describe how it feels. It’s not hurting per say, but it feels strange and kind of aching and disarming. Almost like someone is squeezing my brain, or at least the tissues around my brain. I’m sure it’s just all of those layers of tissue continuing to heal after being cut apart and pealed way from my skull, but laying down flatter certainly made it more prevalent.

Gravity was not my friend. I tried to get comfortable. I always start to sleep on my right side anyway, but even that wasn’t very comfortable. I rolled over and that didn’t help, even when I tried to position the pillows so they weren’t touching my head in that area. Which is NOT easy, trust me! 🙂

So, I grabbed the large pillow again and positioned that behind my head and that helped…or at least psychologically it helped me. I’m not sure if this is just part of that healing and recovery process or if laying lower really created that discomfort. I had the same discomfort driving home from work today. I know I can’t blame that on gravity as I don’t normally lay down while driving! I think they frown upon that.

Dave has urged me to take advantage of our medical personnel presence at the brain aneurysm support group this Friday to ask her if I should be concerned or if that’s just a normal part of the healing and recovery. I just wish I could describe the feeling better.