Archive for the ‘thoughts’ Category

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.


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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.


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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.

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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.

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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!

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It’s hard to believe such a short time ago I felt as badly as I did.  I think back to the days where I lay in bed crying from the pain, the phone calls made asking for help with Kate, the trips to Urgent Care for medications, the frightening blackouts, the dizziness that made me cringe at the thought of bending over.  There were days I wondered if I had the strength to make it through another.  Or to even make it through that day itself.

At 3 months post-op I feel good.  Really good.  A newly made friend mentioned yesterday she is amazed at how well my recovery has gone.  I’ve thought the same thing many, many times over the last 3 months.  I feel very fortunate that the surgery was so successful and that I rebounded so well.  Stories of others told tales of being in bed constantly for 6-8 weeks, taking 6 months to muster the energy to walk around the block and post-surgical complications that required a shunt to drain fluid buildup or more surgeries.

As the time passes and I regain my strength, I feel the edges of the memories start to blur and soften.  The pain of the past isn’t as sharp.  I no longer break out in a cold sweat when I think about how horrible the pain pump made me feel after being transferred out of Neuro Critical Care unit.  My stomach doesn’t turn when I run my fingers over my scar.  I wake up in the morning and look forward to the day, no longer bracing myself for the pain that will descend upon standing.

I’m focusing now on living my life again.  A life free of headaches and chronic pain; a life full of adventure, laughter and love.

But in doing so I wonder what will come of this space.  This was my place to talk about the chiari.  To talk about the pain, the fear, the uncertainty.  My head is okay now–it no longer brings me pain.  There is no more fear or uncertainty about the future.  Surgery has come and gone; “recovery” is transitioning into “recovered”.

Does this blog serve a purpose anymore?

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Giving Thanks

I could sit down tonight and write flowery prose about how thankful I am.  I could go on and on and on. I could gush about how thankful I am for medical technology, health insurance, relationships, health, support…

Instead, I’ll keep it simple.


As I sit here on the Eve of Thanksgiving I am thankful for one thing — my life.  In the literal sense.  I’ve been given a chance for a new, improved version and it’s full of amazing people.  I am so incredibly blessed.  More so than I could ever express.

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