Mixed Blessings

So far this year registration for the KAT-Walk and Karo 5-K run is up considerably from last year. Sadly, part of that uptick is due to a beautiful young man being taken from us by a ruptured brain aneurysm. The outpouring of support for his family from the community and his friends is tragic and wonderful all at the same time. We should all be so lucky to have that kind of comfort at such a terrible time.

We get excited when we see new faces joining us, but it may be because they recently suffered or survived so it then seems wrong to show excitement in any fashion. Reaching out to other survivors and people who have lost a loved one is very important to let them know they’re not alone and to offer support through a day that can be filled with a wide range of emotions. Thankfully the walk/run has also attracted repeat visitors and they make it an annual event to honor themselves, their loved one, or a friend who has been touched by brain aneurysms. We’re so lucky to have their show of support as well.

Monetary donations are vital in helping raise brain aneurysm awareness. I am personally thankful for the 15 people who have donated money on my fundraising page for this year’s event.

However, each year when the walk comes around, I’m always disappointed in the lack of support shown for me AT the event. In fact during my 6 months recovery in the hospital and at home after my ruptured brain aneurysm in 2006, only one co-worker visited me. And during my recovery from my clipping this past January, no one visited. One close friend visited, but only after he got over his cold! 🙂 I couldn’t afford to get sick at that point and sneezing wouldn’t have been fun. So, is it any wonder I get a little down at this time each year?

There is only so much I can do. I’m not allowed to send out one mass email to all of my co-workers anymore and I put posters up in all three locations and lay brochures out. Oh, well. I just need to get over it already. Or perhaps I’m just not that likable and I have annoyed them with my brain aneurysms enough. LOL

That being said, I HAVE made friends that do attend the walk. They’ve been made mostly through the event and they always come anyway, not to support me in general. There are two other survivors who I have been in contact with for many years and I know I can always count on them in some fashion. One is from NH and the other is from FL and will again make the journey to Maine for our event. I can’t even get people IN the state to drive down to Portland for me. Entire groups of people drive or fly hundreds of miles to support their other family members and friends and that’s truly, truly wonderful for them.

My family has gotten smaller over the last couple of years, although my two sisters, Dori and Rhonda from NY never attended the event either, I now walk to honor both their memories as well as for myself because I’m a two-time survivor. Yeah, me! 🙂

Sorry…needed to vent. So lets count this as my whiny, selfish blog entry, okay? It’s my blog… I can vent if I want to, right?

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.

Film At 11

I’ve seen many videos and demonstrations online showing graphics of brain aneurysm operations and medical personnel discussing procedures, treatments and causes of brain aneurysms, but the video below is by far the most educational one I’ve seen to date.

All of the doctors speak clearly and in a language the typical lay person can understand, but it’s the questions the moderator asks (some from viewers) that are probably THE most asked questions. When we’re at brain aneurysm events, many of those types of questions are asked of us. It was reassuring to know we’re speaking the same language as medical professionals.

It’s an hour long, but well worth it. The main focus of the video is coiling an un-ruptured brain aneurysm and the “what, why, and how” of that procedure, but they go into very good details on other treatments and causes of brain aneurysms. I think anyone out there who is newly diagnosed would find this very useful. It’s produced by Baptist Health hospital in South Florida and their staff members are obviously touting their own facility, which looks very good by the way, so if you’re from Florida…you’re lucky to have such a great team!

Brain Aneurysm Video

I have been through two coilings and now a clipping at Maine Medical Center from 2006, and I believe the Neuroscience Institute staff that MMC has acquired is now one of the top crews on the east coast. They’re highly skilled, diverse surgeons and interventional radiologists who can handle cases that were always sent to Boston. People should no longer question having their brain aneurysm operated on at Maine Med. We are very lucky to have this talented group of individuals and nurses helping our local community.

Three Week Update

At the three week mark, I need to step up my recovery and build up my stamina. Dr. Dave informed me yesterday he needs to get me OUT of the house and exposed to more stimuli. Hmm….wonder what that means…and just where did he get that direction?

Seriously though, I do need to do that. During my recovery after my rupture, once I started going into surroundings that I wasn’t seeing on a daily basis that had a lot of clutter, it was tough to process all of the data my brain was seeing. I am hoping I won’t have that kind of difficulty this time because the clipping wasn’t an emergency situation like the rupture in 2006 was.

I’m now trying to come up with a word or two to describe what my scalp feels like the last couple of days. It doesn’t hurt or ache really, it just feels…odd. When I psychically touch the left side of my head it psychically feels like my scalp has been shot up with novocaine and I’m told it could feel that way for months. That’s an easy one to describe and something other people can relate to.

However, when I’m not touching it, there are odd sensations and slight aches and pains when I’m simply sitting still. I’m assuming it’s all part of the process…just strange for me going through clipping this first time after multiple coilings

My hair is growing back and, if the winds are favorable, I can cover that area up with the longer hair around the 1″ wide shaved section and the incision. If it’s windy…well, people get the freak show.

When I have my 4-week follow up appointment, I’ll be curious to ask my Dr. exactly where the bone section of the skull was removed and to get a better idea of the size of the aneurysm.

From middle of forehead to ear Hair growing back And some hair covers it