The Monkey Life

So, it has been two months since I have posted and that it because I have been going through some emotional/financial/physical turmoil.  In any surgery, the ultimate goal is to not only fix the physical problem, but to relieve the symptoms caused by it.  In my surgery, I was warned that just because the physical malformation was adjusted, I may or may not have relief from the pain.

If I had to compare now with pre-surgery, I would say the pain is significantly lower, even if it isn’t always more bearable.  Compared to pre-accident the pain is out the roof.  I have had a tooth pulled without medication and that doesn’t even touch some of these headaches.

But, I don’t consider the surgery a failure.  Many people have to have multiple surgeries.  I don’t know if I will be one of those people.  I do not want to be one of those people.  However, I want the quality of my life improved.

I don’t want you to think it is all horrible, because it is not.  So, here is my view of where I am almost 6 months out of Chiari Decompression Surgery:

• My headaches have come back and one has sent me to the hospital.  They aren’t as bad as before surgery, but they can get close.
• I am always nauseated.  Ginger is my best friend.
• I have ringing in my right ear.  I know that when it starts ringing, I will be getting a headache soon.
• There is a slight bulge on the front/left neck.  it is larger when my head hurts.
• When my left shoulder/neck tenses up, my ear and my eye hurt.  Feels like my eye is being pushed out of the socket and it fails to focus well.
• When I have to urinate a lot, I know that a headache is on the horizon.
• My short-term memory is pretty messed up.  It feels like I had surgery a few weeks ago, like I haven’t been out of work very long (7 months!), I have to read my blog and diary to have an idea of what has been going on in my life.  I don’t cook when I am alone because I forget that foods are cooking.
• I get super hot, but only on the upper body.  This wakes me up from sleep.  quickly turns into feeling sick.  It makes me lethargic.  Physical activity makes this much more acute.
• I almost always have the feeling of pressure at the base of my skull and my neck.  makes it feel stiff.  It lessens my range of motion which makes driving scary.
• My left neck/shoulder sometimes just tense up, leaving my left shoulder 2 inches above the right.  This misaligns my jaw and spine and can cause pain elsewhere.
• When I get too cold I cannot control the fine movement of my fingers or my jaw.  They start to tingle, then they lost movement.
• When my shoulder is tensed or spasming, my left pinky and ring finger do not always respond to commands.  (I type at work and I play piano/guitar/ukulele, so this really matters to me.)
• I have been in physical therapy for 2 months.  After surgery, I could lift less than 5lbs.  6 months later, I can lift 40lbs with both hands.
• I have trouble sleeping.  I get a few hours a day, rarely straight through.  After about 10 days, I am exhausted and can sleep for about 13 hours.
• At times (very rarely), my left hip gives out.  It has not cause me an injury…yet
• I am always tired.

On the plus side:

• I have had a lot more time for my daughter.
• I have perfected a shortbread cookie recipe.
• I have been able to learn to play a new instrument (ukulele).
• I have been sitting in the sun more, so my vitamin D is finally where it should be.
• There are other pluses, but they aren’t coming to mind.

So the bad side looks a lot worse, but it is bearable because I have a family that supports me and is there for me whenever I need them.

If you are going through Chiari, my heart goes out to you.  I know that life can be a struggle.  My personal goal is to find the joy in all of this because I believe my life and my experiences have purpose.