Category: Fear

Two-Year Clip-Aversary

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Me! Brain Aneurysm Survivor
On the anniversary of my ruptured brain aneurysm in 2006 and subsequent coiling, I call it my “Annie-versary” stealing the phrase from other survivors from the Brain Talk Community online who helped me through my recovery. For some reason I feel I need to give my 2nd brain aneurysm procedure (the clipping) a different annual name. Like I’ll be criticized for calling that an Annie-versary too? LOL I doubt it, but I do.

Saturday is the two-year anniversary of the clipping on my second, unruptured brain aneurysm. It turned out to be a delicate aneurysm and it was a delicate time. I had lost my other sister just a few weeks prior to my scheduled surgery and I was wrestling with whether I should go through with the surgery or not. It wasn’t until my niece and mother (who we lost last year) spoke to me and encouraged me to proceed, that I made the final decision to keep the date and proceed. I truly didn’t want to put them through anymore.

I think some angels were watching over me because it was a good thing I DID get the craniotomy & clipping. It was an ugly, thin-walled brain aneurysm that would have surely caused me issues, if not caused my death, at some point down the road.

For my two-year update I’ll recall an earlier format I used to update my family and a few friends on my blog about my recovery process.

FATIGUE: There are still days I KNOW my brain had too much stimulation. It’s difficult to describe other than my brain is tired. I suppose that is something that will never go away. It does get better, but I’ll be able to realize when I need to rest my brain. Not just sleep, but do nothing…think about nothing…just nothing. I need those days still. I also notice my left eye lid will get a bit droopy when I’m overly tired and haven’t eaten much.

PAIN: 
These days, the only pain I feel that is associated directly to the clipping is on the left side of my skull. I have no idea what triggers the pain and I often have difficulty laying on the left side of my head. It “feels” like my brain shifts to the left against my skull and there is pressure there. It’s not a daily pain, but I certainly notice it when it is bothering me and I have to roll over and lay on the right side. Sneezing doesn’t bother me, but coughing really does. I feel it throughout my head and it makes me tired.

NUMBNESS:
 As many people said, including the Dr., this may or may not go away. The skin on my skull hasn’t completely “reconnected” all of the nerves, so a great chunk of it is still numb. I only notice it when others touch my head now. My hair dresser or Dave. At least it’s not painful….just odd. I certainly could have worse issues, so I consider myself lucky.

STITCHES/INCISION:
 I can feel the incision under my hair line and the hair has all grown back so that part isn’t even visible anymore. As the swelling went down and I lost a little bit of weight (20 lbs at one point), the bone flap area “settled” into the skull quite a bit and a dent has appeared. The pins and small plates that secured the bone flap back onto the skull area are also visible and sticking out under the skin on the skull and I most certainly feel them. I’m not crazy about the dent or the brain “bling”, but it is what it is and I doubt anyone but me would really notice them. Although when I have my hair parted differently and the light hits it just right, Dave will notice and always points it out. I’ve seen much worse dents on other survivors I have met, so in comparison, I’m lucky.

Found this great PDF: https://profiles.utsouthwestern.edu/profile/67812/assets/patient-information.pdf

And this one: http://www.mayfieldclinic.com/PE-Craniotomy.htm

BRAIN FUNCTION:
Well, I have survived two more catalog seasons, so I guess my brain function is doing okay. I certainly feel tired at times, but I’m very, VERY lucky that I can drive, work, read, and function on a daily basis. I’m a little slower and a little more careful when walking and traversing walkways, hills or paths because I have a bit of a fear of slipping or falling and hitting my head.

I do still struggle with some survivor’s guilt. Why, dear Lord, am I so lucky with my multiple brain aneurysms when two (and possibly three) people I loved so much were victims of the same ailment? One can say because God has other plans for me to help others. If that’s the burden I have to carry, then so be it. I can’t say I’m crazy about it though. I’d rather have Kim, Dori, my mom and Rhonda back.

So, I will celebrate my clip-aversary in some fashion I’m sure. I’m glad I’m still here and I hope a few others are as well.

Head Over Heels

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A fellow brain aneurysm survivor posted on Facebook tonight that she had fallen and hit her head pretty hard. After a CT scan, she was given the “all clear”, but I know it must have been scary. She has been through multiple procedures and suffered a stroke.

This week I celebrated my 9th Annie-versary: nine years ago I suffered a ruptured brain aneurysm. The 11mm (almost 1/2 inch in diameter) aneurysm I didn’t know was growing inside my brain suddenly ruptured. The annie-versary day went by with little fan fare. My husband made me dinner, which is always a special treat, but beyond that, because I’m always so busy at work, I didn’t do much to celebrate.

The first couple of years, I would take the day off and have a spa day. I think I need to start doing that again…regardless of how stressful & busy things are at work this time of year…which it always is. They’re lucky to still have me.

Falling and hitting my head is probably my biggest fear. I hate it when I get to work late and have to park up on the very steep hill parking lot. I always fear falling down and make sure I grasp and have a good hold on the PVC pipe railing along the “side walk” up and down the hill. The railing is always covered with snow or ice too, so not sure how much of a help that is.

I probably didn’t share this with many people, but on our last night in Scotland in 2013, our tour guide dropped us off at a hotel near the Edinburgh airport. Dave and I enjoyed a lovely dinner in the hotel restaurant, then I REALLY wanted to take a long soak in a tub and there was a deep, soaking tub in our room at the hotel. As I was getting out, I misjudged the height of the tub to the floor and slipped on the tile floor as I got out, BARELY missing hitting my head on the tub and landing on my backside pretty hard.

Dave immediately ran in from the other room. I was laying on the floor with my head pretty much laying up against the tub. Once we both realized I was okay, we both shook in fear. It was a scary moment and one I hope never to repeat. And that was before I had my craniotomy on my 2nd brain aneurysm.

I suppose the fear is that a hit on the head could produce some sort of shock on the aneurysms and force them to bleed. Or that the surgical work that has already been done…could become “undone”. I’m not even sure how realistic that fear is. I supposed I should ask on my next visit with my neurosurgeon. Because I’m susceptible to aneurysms and bleeding, I would think any hard hit could be a risk. So, I’m very glad Lori got a CT scan after she fell and hit her head. I’d do the same thing.

I didn’t hit my head when my first brain aneurysm ruptured in 2006. No warning, no symptoms, that I recall. But I know that brain hemorrhages can occur when hitting your head. The tragic death of Natasha Richardson is a sad example of that.

So, nine years ago this week, I was in the ICU at Maine Med, then moved to the 608 Neuro-ward. I was in the hospital for two weeks then had six months of recovery before going back to work full-time. Only one person from work visited me and it was simply because she was in the area. I’m so glad Lori has such a wonderful group of friends to support her. I’m sure this fall scared her very much. I know her daughter and husband keep a close eye on her and I’m sure THEY were just as scared as she was. Her service dog Tober will make sure she’s okay. What a great dog he is. Love him.

I’m a NASCAR fan, and the race at Charlotte, NC is this weekend. I remember watching that race in ICU with Dave and my sister Dori (who died of a ruptured brain aneurysm in 2012). They were impressed I knew the drivers and was so responsive. I was one of the lucky ones. Some times I wonder WHY I was one of the lucky ones when so many beautiful, vibrant people who had children to live for aren’t here anymore. It just doesn’t make sense some times. Survivor’s guilt? You bet cha. I’m not a mother and I think I’m a very selfish person, so I’m not sure why God chose ME to live over all of the other beautiful, strong individuals who have lost their lives and devastated their families over ruptured brain aneurysms. It just doesn’t make sense to me some times.

So, yes…I walk slower in snowy & icy conditions. I drive slower in snowy & icy conditions. I don’t ride a bike anymore because of the fear of falling off and hitting my head. I don’t do any strenuous physical sports anymore…not that I ever did before. Falling and hitting my head can happen at any time…even slipping on some of the acorns in the driveway, which is like walking on marbles, gives me pause. I bought this fear up at a support group meeting, but I was on the only one who addressed it. I’m sure other’s have that fear. I’m so glad Lori is okay after her fall. Aneurysms survivors have another added fear. Goody….but I’m still here.

A Compelling Story

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“You need to have a compelling story.“ That’s what we’ve been told our group (Maine Brain Aneurysm Awareness) needs in order to get some local television coverage. Webster’s dictionary’s definition of the word “compelling” is:

: very interesting
: able to capture and hold your attention
: capable of causing someone to believe or agree
: strong and forceful
: causing you to feel that you must do something

So, apparently no one feels the following examples are compelling enough to warrant at least one television or newspaper interview in the last 6 years?

  • A vivacious 32-year old died suddenly in her bathroom of a massive ruptured brain aneurysm three days after Christmas. She lived alone and was found the following morning by her devastated mother. (The KAT-Walk was created in her memory & honor)
  • The husband of a ruptured brain aneurysm survivor also lost his niece and sister-in-law to ruptured brain aneurysms.
  • A woman from New Hampshire was vacationing in Maine and suffered a ruptured brain aneurysm in Shaw’s Supermarket. After a misdiagnosis, she eventually went to Maine Medical Center where the only interventional radiologist in the state saved her life. A few years later, she also survived breast cancer and a double mastectomy.
  • A man suffered a ruptured brain aneurysm while home alone. After many hours, his young children discovered him after coming home from school. Two hospitals and a trip to Boston saved his life.
  • A 40-year ruptured brain aneurysm survivor had to be taken to Canada.  At the time of her rupture, no one in the northeast did brain surgery for aneurysms then. The original clipping failed and she was re-clipped. Which means multiple craniotomies. She is a walking miracle.
  • A much-loved 53-year old woman died of a massive ruptured brain aneurysm on Mother’s Day after presenting symptoms two previous visits to doctors, leaving a husband and a 15-year old son behind.
  • A beautiful 28-year young woman, who was an active runner and very physically fit, suffered a ruptured brain aneurysm while working out. She never recovered leaving her family devastated. She was to be married only a few short weeks after her death. (The Karo-5K was created in her memory & honor)
  • One woman survived a ruptured brain aneurysm that was filled with 11 coils, only to lose her sister to a ruptured brain aneurysm six years later. Then Dr’s discovered she also had a second brain aneurysm which was clipped via a craniotomy, but the original one that ruptured is still giving her cause for concern 9 years later.
  • A father of three survived a devastating ruptured brain aneurysm. The deficits he and his family have faced are life-altering and difficult but he IS alive and living life to the fullest.
  • A woman’s ruptured brain aneurysm at 4 a.m. left her with limbs numb, speech slurred, a rapid heart rate, sweating, and falling to her knees. The EMT’s who arrived at her home took her blood pressure and asked some questions. They determined it wasn’t a serious issue and left it to the patient if she wanted to go to the hospital or not. Thankfully she went on her own and the Dr. in the ER sensed what it could be and had her scanned and transported to Maine Med where her life was saved.
  • A young, talented, 13-year old boy fell victim to a ruptured brain aneurysm in his home. The outpouring of grief and support after his death was overwhelming. (Nolan’s H.E.R.O. Foundation)

I could go on and on if I knew I could accurately describe the situations of everyone that I have met. So many stories of hope, fear, disaster, strength, and courage.

So…apparently none of those stories are compelling? How many people have to die and suffer debilitating deficits before this cause it compelling enough to the local news media? To those whose lives have been touched by brain aneurysms there is plenty to hold one’s attention. Survivors HAVE to begin to believe they’ll be fine or they’ll crumble. And in many cases of those left behind, the desire to DO something is overwhelming after these silent killers attack without warning in some cases. Our fundraising events do more than raise money to help other families, they raise the hope and spirits of those left behind or those surviving.

We were lucky enough to have a lovely article written about Kim after her passing. It was written in the local sports section because she was a fantastic softball player, but beyond that, we have received little to no local media support focused solely on our cause. It’s not for our group’s benefit…it is to raise awareness and to allow others who have been touched by brain aneurysms to gather and support one another.

Our cause doesn’t have a specific color that we brand; doesn’t have a celebrity spokesperson that everyone adores; or a social media “challenge”. The more we’re able to talk about brain aneurysms, the more awareness will be raised and hopefully we can SAVE A LIFE.

I think that’s pretty “compelling” don’t you?

READ MORE About Us: MaineBA.org

It is estimated that up to 1 in 50 people in the U.S. will develop a brain aneurysm during their lifetime. Each year about 30,000 people will suffer a ruptured brain aneurysm. Almost half of the victims will die and of those surviving, only one third will recover without disabilities.

2014 – Be Gone!

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This year was already one I was looking forward to being over. Just three days into the year, I lost my other sister Rhonda and because I was scheduled for brain surgery just a week later, I never made it back home. There wasn’t an immediate service and my niece and mother insisted I go ahead with the surgery as planned.. So I did.

Little did I know on Christmas 2013 when I spent my 50th birthday back in my home town, that it would be the last time I’d see my sister Rhonda AND my mother.

As I was just hoping to make it through the catalog process in one piece and with intact brain function, my mother suddenly passed away. She had been ill for a few weeks and had been in the hospital twice, then seemed to be doing okay at a rehab facility. So, it was shocking on a Saturday morning when she passed. Her blood pressured dropped, she became very ill and in the blink of an eye my beautiful, vibrant mother was gone. She was 87.

Because her death occurred a week prior to catalog files having to go to the printer, Dave and i were able to leave Maine immediately and drove to NY for only a few days to make arrangements and scope out the situation at her apartment. Then, as plans for a memorial service were being finalized, I had to come back to Maine to get the files out. I suppose being so busy when I came back helped me kind of block it all out, but not really. We still had to go back for the memorial service and get her apartment cleaned out.

In the span of less than two years I have lost both of my sisters (one to a massive ruptured brain aneurysm) and now my mother. I’m now parentless and an only child. As my mother and I discussed many times since both of my sister’s deaths, it was becoming increasingly difficult to recall events and people with any certainty without corroboration from either one of my sisters. Mom and I relied on each other for that.

Planning my mother’s memorial service was difficult from a distance, but I think, no, I KNOW, we did her justice and I know she would have been smiling. We had a little bit of fun at the service and that’s what mom was all about: laughter and fun. I doubt my home town has ever seen the likes of my mom’s memorial service. The dixieland band was a smash hit and a special request directly from my mother.

20141115-064916.jpg
Sister Rhonda, niece Jenny, and my Mom last Christmas 2013.

It was wonderful to see old friends and the many relatives that came out for the service. It’s just a shame it was under such circumstances. And through all of this, all I could think of was how I shouldn’t be doing this without both of my sisters by my side. That thought added to my grief and only made me miss them more.

My home town in New York has changed so much since I left there in 2000 and not for the better. Granted, it wasn’t a bustling, thriving town, but I look at it now, and it only brings sadness for what was. The house I grew up in was sold around 2004 and my mom began the last chapter of her life in a wonderful apartment complex. The old house has changed dramatically. Some of the changes are good, some….not so much. There are so many homes I used to admire growing up that have fallen into disrepair and almost unrecognizable as livable homes…and yet, they are! Even the street I grew up has changed. It used to be a lovely tree-lined street on a long hill. The trees became diseased and they all had to be cut down. It doesn’t look like the same street.

I know time changes everything and not always for the better. Driving around my home town made me sad in many ways. My father passed away in 1994 from cancer. I discovered some wonderful items of his I had never seen or read while cleaning out my mom’s apartment. They are now my treasures.

So, as I boxed up memories from my mom’s apartment, and brought them home to Maine with me, I am not looking forward to the holidays. They were going to be difficult anway due to the loss of my sister Rhonda, but now they’ll be doubly strange, sad, empty and tragic. I have to, yet again, get used to holidays without not one, but two relatives and your mom is a big hole that no one can fill.

I know I’ll get through it. Not much choice. It is what it is and our holidays haven’t been the same since Dave’s niece Kim died in 2008, again, just a few days after another holiday. Gone, are the fun family holidays where we played games, shared laughs and good food. We’ve done okay, its just far more low key than most people’s holidays.

Do I miss spending a Christmas with family and friends, of course I do. Does it mean I still can’t enjoy the holidays and enjoy christmas carols and holiday movies? No. I love all of that and I try to remember and honor those I have lost in some fashion. Whether it’s by lighting a special candle in the window, hanging that specific, meaningly ornament on the tree, or simply taking time to recall what that person meant to me I need to allow myself to FEEL their loss, but also celebrate their life. Easier said than done on some days, but my life won’t ever be the same without my mom….but liffe DOES go on and that’s something I know she’d be preaching to me.

My niece Jenny and I will move on and we’ll be okay. We’ve both lost out mother’s this year. We were blessed to have them in our lives and are both better people as a result and we should be thankful for that. So many people don’t have loving mothers, sisters or grandmothers.

I’m tired, sad, and a little lonely, but my husband, as usual, has been my rock and my salvation. Yes, I’m ready for 2014 to SO be over, but I look forward to the year ahead and creating new memories with Dave. We’re only given one life (or perhaps multiple ones, as my mother believed) and we should enjoy it and LIVE! So, bring on 2015, please.