A Decade in the Making

Pull up a chair, grab your favorite beverage, and settle in…I’ll admit this may get touchy-feely.

This blog was started back in the summer of 2009 when I was first diagnosed with a chiari malformation as a way to keep everyone in the loop. It detailed our journey through neurosurgery consults, posterior fossa decompression (i.e. brain surgery), and my recovery. In a way, it was also a journal for me.

I think about what I’ve been through and the journey I’ve traveled year-round but when the end of September stares at me from the calendar, it occupies more and more of my thoughts. I start to get introspective, reflective, quiet.

I’ve been mulling this post around in my head for days. Trying to put into words the jumble of thoughts and feelings. Trying to sort it all out and find a way to adequately sum it up.  This year it’s weighed on me differently than in years past, and until a couple of hours ago, I wasn’t sure why it was different.

Ten years ago today I had brain surgery.

 

TEN. YEARS. AGO. TODAY. I. HAD. BRAIN. SURGERY.

 

It’s been 3562 days since I checked into the hospital that morning, a white-knuckle headache accompanied by vomiting and nausea reaffirming why I had chosen to gamble on a procedure that wasn’t guaranteed to help. A procedure that I hoped would provide me even a sliver of relief from the headaches, the blackouts, the depression.

I spent some time skimming through old posts this morning as I sat and sipped a cup of coffee. Reading the posts by Cris or Jess before I felt up to reconnecting with everyone myself.

The details surrounding the day of surgery, the night in ICU, and the next week or so are fuzzy now. The harsh edges have faded, softened, blurred. Perhaps by time; perhaps as a way for me to move past such a paramount event in my life.

There was much more that surrounded my brain surgery than many people are aware of. Beyond the physical pain triggered by the chiari symptoms, and the trauma of surgery and recovery, there’s an emotional toll I spent years carrying around.

The depression I was shrouded in damaged friendships. Some beyond repair as I withdrew and pushed people away.

My stubbornness and tendency to be fiercely independent meant I didn’t ask for the support I needed from some people, (unfairly) triggering resentment when my needs were left unmet.

When I did ask for help, I harbored disappointment and anger because of unmet expectations.

Previously, every year when October 2nd rolled around, I’d sit and think about how grateful I was for a surgery that gave me a second chance at life. A surgery that resolved many of my symptoms, greatly bettering my quality of life.

I’d put up the stereotypical post on Facebook. Gushing about gratitude and how I couldn’t believe another year had passed. Shouting that I was a brain surgery survivor. Thanking family, friends, and neighbors for their physical and emotional support through what was perhaps the darkest, most challenging time of my life.

But I didn’t talk about how the anniversary triggered me in a way I wasn’t even fully aware of. It opened up the emotional wounds; reigniting the depression, the resentment, the disappointment and anger.

I recently “graduated” from 18-months of counseling that kicked my ass and made me realize many things (including a solid PTSD diagnosis from my brain surgery).

I realized I was unable to unload emotional baggage I’d been carrying around since I was a teenager.

I realized my inability to process and let go of the anger and resentment was affecting my life and relationships.

I realized I had to unpack all the baggage I’d been carrying. From my parents’ divorce to my infertility struggles, to brain surgery, and everything up following it. I had to take responsibility for my feelings and move on.

To say the least, this has been one hell of a decade. I’ve gone from being a married mom of a toddler to a single mom of three kids. It has without a doubt been the toughest 10 years of my life. With everything that had happened, there was a lot of anger and resentment to let go of.

And let me tell you, pulling all that junk out and sifting through it wasn’t easy but I put in the hard work.

I unpacked the baggage and started on a journey to become the Amanda I want to be. Someone who I’m proud of, not necessarily because I did things the “correct” way but that I did them in a way that was right for me. An Amanda who doesn’t hold onto what has happened in the past, gripping the anger in my fist like a hot coal, hurting only myself.

Looking back ten years, is this where I thought I’d be today? No, not at all.

Looking back a year, is this where I want to be today? Yes, mostly.

I am and will continue to be, a work in progress. But on this milestone anniversary, I realized I’m finally at peace.

 

 

 

2nd Opinion

Upon the suggestion of a couple of friends (and based upon the recommendation of some others), I scheduled an appointment with another Ears/Nose/Throat doctor here in town to get another opinion. 

His believes without a doubt, I will see relief from headaches (he can’t guarantee 100%) by opting to go ahead and have surgery.  Not only are there numerous cysts in one sinus cavity, I also have a “horribly” deviated septum and what appears to be chronic sinusitis in the cavity opposite the cysts.  He said that it wasn’t any wonder why I was having headaches in response to weather changes.

This appointment made me question whether the first doctor even looked at the MRI images or just read the radiology report as it never mentioned anything other than a single cyst.

Right now, I’m set for surgery on September 16th.   I’m beginning to feel like I should apply for a frequent flyer discount.  😉

Another Year

Two years ago today I heard the word Chiari for the first time.  Two years ago I walked into my NP’s office bracing myself for a possible diagnosis of multiple sclerosis; I walked out stunned, confused, anxious and scared.  I needed more information but was afraid to find out more at the same time.  Afraid of what could lay ahead.

I’ve come a long way in the past two years.  A successful decompression surgery, a brand new baby and a slowly growing business.  Life is crazy busy but it’s good.  I’m grateful to have the craziness and to feel well.

We found out a couple of months ago that I have a cyst in my sinus cavity.  I had a nasty sinus infection just before the baby was born — my guess is that the antibiotics I took didn’t completely clear the “junk” out, causing the cyst.  Just after delivery I started having some random headaches again as well.  I’m wondering if the cyst is what is causing them.  The doctor has offered surgery as a possible solution but can’t guarantee it will solve the problem.  Right now his prognosis is 50:50. 

I’m still on the fence about surgery.  I’d love to be headache free again but don’t know if a 50% chance of relief is worth having surgery for.  When we were faced with those odds regarding my brain surgery I didn’t think much about it.  I knew I had to try it.  But in this case I just don’t know.

New Year, New Baby

Another beautiful baby girl joined our family just after midnight on January 1st, making her the official New Year’s baby for the area.

Comparing

In the last couple of weeks I’ve continuously found myself comparing “today” (i.e. whatever day it was) to a year ago.  I’m not sure if it’s a good thing to do or not because the situations are so completely different but it’s a habit I just can’t break.

It amazes me how far I’ve come in a year.  A year ago we were delicately navigating our way through recovery — facing encounters such as H1N1 — and watching my progress day to day for signs of improvement.  Today we are hurdling towards the arrival of a new baby and the start of yet another new chapter in our lives.

A Year Gone By

One year ago today, I told my husband I loved him and tried not to cry as they wheeled me toward the operating room. My thoughts vacillated between the scary “what ifs” involved with brain surgery and the hope of a new, improved life.

The summer had been a whirlwind with the Chiari diagnosis in early July, appointments with neurosurgeons and neurologists and then planning for the surgery we felt was the best path for us.  As much as I tried to cherish the moments leading up to October 2nd it felt as they had slipped so quickly through my fingers.  So much of my memories were veiled in pain and fear of the unknown.

With the help of a fantastic neurosurgeon and the support of an amazing network of family and friends–too many to list right now–I came through surgery with flying colors.  The first few days following the ordeal are very fuzzy, which now mimic the memories of the headaches and pain that used to plague me as well.  As my body healed in the first few weeks after surgery it became evident how successful the procedure had been.

Now, a year later, I’m grateful for the opportunity I’ve been given.  I’m grateful we made the decision to travel to Salt Lake to meet with Dr. Schmidt at the University of Utah instead of relying solely on the opinion of a local neurosurgeon.  I’m grateful that I never had to find out about the scare “what ifs” of the surgery.  I’m grateful to live (mainly) pain and symptom free with an occasional headache peppered into my life to keep me humble.  I’m grateful that I was a positive statistic in this game of what appears to be chance at times.

A year ago, with the help of many, I kicked Chiari’s ass.

I AM A BRAIN SURGERY SURVIVOR!

Under Pressure

We kept it fairly under the radar, but I had an appointment with a neurologist here in town a few weeks ago.  Throughout the summer I’ve had a smattering of headaches and some point tenderness at my surgical site.  My OB thought it warranted a trip to the neuro just to make sure there was nothing going on with the Chiari.

Thankfully, the neurologist doesn’t believe for an instance that it’s Chiari related.  Instead he believes they are probably pregnancy induced and exacerbated by not being able to take any typical migraine meds for them.  He started me on magnesium and riboflavin supplements as a preventative measure to see if it was deficiency related.

The supplements haven’t seemed to make much difference but it’s become increasingly apparent to us that these headaches are weather related.  I had suspicions early on that was the case.  After 2 horrible headaches in the last week, on days with almost identical weather patterns, my suspicions are pretty well confirmed.

It seems as though I get headaches when we have a change in weather blow through.  Especially when we have high winds bringing in a storm front.  My guess is that it’s the change in barometric pressure that is triggering the pain.

Perhaps they’d be easily managed with my normal meds, but for now I’m trying to combat them with fluids, tylenol, sudafed and a pain pill (per the approval of both my OB and neurologist) when they get bad.  Hopefully fall will make its final appearance soon and these weather changes will stabilize.

Another Milestone Gone By…

Yesterday marks the 1-year anniversary of our trip to Utah to meet with the neurosurgeon.  In a short 6 weeks we’ll be drawing close to (or passing by) the one year anniversary of my decompression surgery.

It may sound trivial for me to mention this stuff here, but it continues to baffle me that it’s been a full year since we were in the thick of that part of our chiari journey.

Celebrating Success

A few months into what we considered to be a wonderfully successful recovery, we made a decision to take the leap and expand.  😉

Baby #2 is expected January 11, 2011.

An Anniversary of Sorts

On July 20, 2009 I went to my NP to get the results from my MRI.  As I drove across town I had fears and anxiety about what I’d hear.  With the symptoms I was presenting his concern, although unlikely in his opinion, was multiple sclerosis.  Since I have familial history it wasn’t a complete shot in the dark.

There was no way I was prepared for what I heard.  It was that appointment where he told me about the chiari malformation.  He also said that he knew very little about what it was, what it meant and what the prognosis was.  All he knew is that someone who got “paid more money”, i.e. a neurosurgeon, needed to talk to me about it.

After leaving the office that day, I sat in the parking lot stunned before starting my vehicle.  I had been preparing myself for something I was familiar with.  Not something that I’d never heard of.  Worse yet, not something that my doctor couldn’t even tell me much about.

When I looked at the calendar yesterday, I could hardly believe it has been a year since that appointment.  What an amazing year it has been!