Saturday, May 11, 2019

5 Year Post Op Update

My birthday this year, April 16 marked five years since my last brain surgery...
I am still amazed and sometimes even stunned to realize I've actually undergone two such surgeries.
Surreal isn't quite the word for it. I guess for me the feeling is more like "unreal".
I know it happened, I sport around the scars that prove it.
Yet it still seems to have happened to someone else. Someone in a different lifetime. Someone that wasn't quite ME!

As these words appear on the page before me, I feel silly for thinking it. People all around have health issues of all types from chronic to terminal. Pain, suffering and sadness float around these people like an ominous cloud.

I wonder if I have such a cloud.  If so, is it visible? What do others see when they see me?

Chiari Malformation and related disorders are more "invisible" conditions than most. Chiari patients appear normal on the outside. No one considers them "sick" or "ill". We are a stoic group, only showing our weakness, sadness and/or pain to a select few individuals that we very selectively let in to our inner sanctum.

Blogging was a huge outlet for me when I was first diagnosed. I wanted to make the world aware of this very common yet "rare" condition that is misunderstood by the medical community and barely understood at all by the general public.  After two surgeries and now five years of recovery and living a "normal" life with a busy full time job, I am more reclusive than I ever thought I would be about Chiari.  Chiari is a lonely disorder, isolating with its 'flare ups' (for lack of a better word) and activity limiting.  To be honest, I think we self-isolate in order to better care for ourselves, physically and mentally. Explaining Chiari over and over and over again to the same people is tedious and frustrating.  I suppose that's why I stepped away from this blog for such a long while.  Discussing Chiari with friends, family and even strangers became monotonous work that had to be repeated all too often.  Comments like, "but didn't you have surgery to cure that?" and "but you don't look sick" weigh heavily, making the Chiari patient feel defensive, needing to continually justify his/her illness/symptoms/reason for missing social events/etc.

Five years has been a huge roller coaster ride with this disorder.  Really, I've been riding the roller coaster longer than that- being diagnosed in August 2012.  I searched for months for a neurosurgeon to treat me.  I went to a few of the "greats", being turned away or brushed off, or told to "give it time".  Then had my first surgery in January 2013 and the following in April 2014.
That being said, I can trace symptoms back to childhood and even before I was born I exhibited signs of the disorder that are now considered a reason for concern in an unborn child.
It has been a long, winding, bumpy road.  And it keeps going.

In 2017 my symptoms recurred. Not to an alarming point, but at least to a point of concern.  I again saw neurosurgeons, neurologists and primary care doctors.  I was told my MRIs look stable, so I have just lived with the things that recurred.  Just part of life, no big deal.  Dizziness when looking up, head and neck pain, intolerance to riding in cars/trucks, spontaneous choking, blurred vision, tinnitus, intractable fatigue, inability to sleep, numbness, vision problems...but- still, I've worked and figured out a way to live a relatively normal, reclusive life.  I've isolated myself more and more from friends, family and society at large.  I've focused on work, writing, existing.

February of this year, things changed drastically. I was hit from behind in an auto accident. My car was at a total stop waiting to turn and the person that hit me didn't see me. He never even attempted to use his brakes. Of course the hit jarred me, snapping my head forward. Instantly my vision blurred and I had left sided facial, hand, leg and foot numbness.  My head and neck throbbed and I was taken from the scene to the emergency room.  In the ER, I was seen by a nurse and a PA.  No one did a neurological exam. I was sent for a CT scan and given a shot of Dilaudid for pain.  The PA told me things looked "stable" on the CT and that I should see a neurosurgeon if not better in a few days.

Now it's May and my symptoms have worsened consistently. Head and Neck pain, difficulty swallowing, ringing in ears, can barely stand to ride in a car, but can drive one if the road is relatively straight and not bumpy, numbness in pelvic area, electric shocks in feet, numbness in back, brain fog, blurred vision, dizziness...and the list goes on. I finally got into see a neurosurgeon a month after the accident only to be told my case is very complex. (No kidding?)  A referral was made to a more specialized neurosurgeon in Maryland and today, I currently await for May 23rd when I see that doctor.

I'm not complaining really.  Perhaps this is more of an "explaining" than "complaining".  Or maybe its the guilt of not being more active in the Chiari community like I was before. Or maybe the guilt of not being more active in the lives of others as I once was. I don't think I'm depressed.  I think I'm just exhausted with the process. Each doctor visit with any doctor turns into a battle of sorts. I think my armor has gotten a little chinked and I am a little war weary. Maybe that's my problem. It's possible, that there is no problem at all, I'm just a normal person having a normal little venting session.

Maybe I have expectations that could not possibly be met. I had hoped and really thought that by five years post op I would have a remarkable new health status. I was told to figure one month for each year of age I had symptoms for recovery time. I had  the last surgery at age 44, so I guesstimated a four year return to "normal health".  I knew I would likely never be symptom free, but admit I am disheartened to be back at what feels like the beginning, begging a doctor to listen and to actually want to help me.  

So, that's my 5 year surgical update and whining session.

On the brighter side, during those 5 years I gain two more beautiful grandchildren, another beautiful daughter in love, bought a new home and have worked at a "new" job for the past 3 years. I've traveled to Australia, France, Italy and Greece, along with several destinations in the U.S. -  Without those surgeries, I wouldn't have been able to enjoy life as much as I have and I am very grateful for that!

I will post an update here after my visit with Dr. Henderson in Maryland later this month.

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