Saturday, October 5, 2019

Countdown to Surgery #3- Nineteen Days to go

"I don't even know how you begin to plan for something like that..."
As soon as my co-worker said it,  I felt hollow inside.  I half smiled and shrugged my shoulders, shrugging it off as no big deal as I went back to my office.

Once in my office, I opened my planner.  I felt grateful to still be a week away from having to turn the page to the next month, October, where the words SURGERY were written across the date of Thursday, the 23rd.   Still a month to go, so no need to panic.  Right?

Now, I've turned the page to October, and the days are slowly rolling one day into the next as I plan and prepare. I've had all of the required scans and am waiting for a follow up conversation with my surgeon.  I've submitted all of the documents to my employer, my primary care doctor, my surgeon's office and I'm waiting on responses.  Pre op labs are scheduled, hotel reservation is made. Flights are booked.  I bought new pajamas and am considering cutting my hair.  Things are moving right along, both very quickly and at the same time, at a snail's pace.

I have a million questions for the surgeons that spin around in my head continually.  How much range of motion will I lose? How do you determine where to fuse me?  How do you know what my natural gaze should be? Will I have trouble eating or swallowing? And the list goes on  and on.

I busy myself with packing- because my husband I are likely insane to be moving the week before surgery.  When I'm not at work, I either pack or rest.  Or, like today, I research.  Today, I'm researching foods I should avoid with mast cell activation syndrome, because I want to have a list of the foods I can have available for those taking care of me.  I worry about how I'll feel post op, then I stop and pray and try to clear my mind.

I decide to pour this out on the block I started about nine years ago--I don't even know if anyone ever reads it , but I plan to use it to track my recovery, So I decided to start today.

19 days and counting!

Chiari Awareness Month post- 2019

For the last few days of Chiari Awareness Month-  I thought this to be a fitting cover photo-- Since so many of us get brushed off by well-meaning doctors, friends and family because we don't "look sick".  I am very grateful and thankful to God every day for not "looking" the way I feel.  I posted this over six years ago- before my first Chiari surgery.  Now, over six years later, I am counting down the days to Chiari Surgery #3, a combo of Chiari decompression revision and occipitocervical fusion for craniocervical and atlantoaxial instability.   While I haven't posted about it much, I've had many months of traveling to see specialists, medication protocols, new diagnoses, relentless dietary changes, physical therapy, neck brace trials.and more MRIs than I can count.  -Literally-

Each specialist has brought new light to some aspect of Chiari and I am so grateful, even though while going through it, I've been ridiculously emotional, frustrated and sometimes just down right angry.

What started out as simply "Chiari" has expanded into, arachnoid cyst,  Ehler's Danlos Syndrome Hypermobiity Type (hEDS), craniocervical instability, atlantoaxial instability, mast cell activation disorder, Hashimoto's,...and possibly more that my neurosurgeon is now investigating.

I've worked with top neurosurgeons from basic Chiari surgeons, Dr. Dong Kim (Mischer Neuroscience-Houston, TX) and Dr. Kaisorn Chiachana (Mayo Clinic, Jacksonville, FL) to actual Chiari/EDS specialists, Dr. John Oro (Chiari Institute, Aurora, CO), Dr. Fraser Henderson  (Metropolitan Neurosurgery, Silver Spring, MD) and Dr. Jeffrey Greenfield (Weill Cornell, NYC, NY).  

I've learned so, so much over the past six years- and am realizing that this process will be ongoing, nothing is certain and each of us has to be their own best advocate.

So, If you have read all the way through- thanks so much for taking the time-  Bob and I would appreciate any prayers as we travel to NYC next  month for surgery on October 23 with Dr. Jeff Greenfield and his team at Weill Cornell.

And remember, don't let looks fool you, you never know what struggles are hidden behind smiling faces on Facebook.   #ChiariMalformationAwarenessMonth  #EhlersDanlosSyndrome #ChiariMalformation #Imakechiarilookcool

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.

Saturday, July 1, 2017

Deja Vu...It can happen to you (Um, I mean...Me!)

News Flash:  I am an addict.

There, I said it.  I need a twelve step program for addicts.

I am addicted to  Totally addicted.

I can't put two sentences on paper without using it as a reference.  I get "Word of the Day" email alerts and I thrive on acing every quiz on the website.  Maybe that makes me more of a nerd than an addict.  Either way, it's a problem I am aware of and I plan, one day, to seek help.

But, not today.

Today I referenced, deja vu.   I needed to be certain of using the term appropriately.  Here is what has to say about this term:


Psychology. the illusion of having previously experienced something actually being encountered for the first time. 
disagreeable familiarity or sameness: 

My focus is on the second definition.  Because, this is where I live right now, in a state of disagreeable familiarity about what is going on inside my skull.   I'm not happy about it.  Not one bit, but it's time to face the music. 

It's happening again.  All of it. 

Around January or February, sporadic headaches began to come in more frequency, dizziness, pressure...not continual, just subtle reminders that yes, I have a less than normal situation existing within my skull.   Slowly, these issues have increased, or perhaps morphed is a better word..into almost constant neurological issues. Pressure headaches wax and wane, but feel I have on a tight headband at all times, in varying degrees of tightness.  Vision problems hit me hard about two months ago, and now added to that is a constant high pitched hum that drowns out everything except the constant dialogue I have going on inside my head. 

The dialogue has been going something like this, "Am I dreaming this? Is it really happening? Should  I go to the doctor?  Do I need a doctor?  I don't have a doctor. This will go away in a few minutes. I have to go to work. Does anyone care?  Do I care? Should I tell someone? Who should I tell? Does anyone really care?  Will my family be annoyed? What the heck is going on here?"

Over the course of the past several weeks, I have been in touch with my neurosurgeon's office and will be going back to Houston July 10-11 for a new set of scans and a face to face with the man himself, Dr. Dong Kim.   Dr. Kim is a world-class neurosurgeon.  He does not claim to be a "Chiari Specialist", but he is a brain tumor rock star.  By definition, arachnoid cysts are considered to be a form of brain tumor.   Since I have a custom cranial combo of Chiari and Arachnoid Cyst...Dr. K is the guy for me to see first.  He performed my Chiari Decompression and Arachnoid Cyst Fenestration in 2013, then my Cranioplasty and Intracranial shunting in 2014.  He told me then that if we got to 5 years post op we were likely home free.   Now, I am three years post op and feel like I've done really well.  No complaints from me.  I've traveled all over the world.  I work a rigorous full time job. I have a full, beautiful life that would not have been as full without the last two surgeries. 

So now, here we go again.. 

I hesitated to post on my blog about this...or anywhere.  For two reasons: 1. In recent years, I've dropped out of Facebook Chiari Support groups due to so many bullies in those groups (which is really the saddest thing I've ever seen)  and in recent years, I've dropped out of the lives of many people.  

Not too long after my second surgery in 2014, tragedy hit my family.  At the time, I was busy coaching others with Chiari, helping them rebuild their lives.  I was very involved in support groups in Dallas and I felt great about being the advocate I had become for others.  Yet, when tragedy hit home (which I won't go into, but if you know me personally...then you know),  I did not get support in return.  I got lashed out at, dropped, deleted, snapped at, even slandered.  So, I just retreated from it all. 

A few months ago, when symptoms started returning, I stuck my head into a few groups and honestly, am appalled at the bullying that still goes on.  I have found only a few places that feel supportive and I am truly deeply saddened that some people have turned their own physical pain into a weapon to use against others.   Really, people that live with neurological challenges need each other.  We need the understanding of other people that have been right where we are, face the same challenges, have the same thoughts and fears. 

So, here I am.  I'm putting my thoughts and words out into the world again on this blog.  I realize there is purpose in all of this.  Writing about my experience may only help one person, but one person is enough.   

In the past, I've held back a little on this blog.  I didn't realize it until I re-read some old blog entries.  Those days are over.  Expect the writing to  be more raw,  real,  even visceral.  Remember, if you don't like what I have to say, you have the write to not read.  Exercise your rights.  I'm all for you. 

So, here is an excerpt of my personal journal entry from yesterday: 

My ears ring so loudly I can barely hear over the deafening hum. 
When I stand too quickly (which is normal pace for the rest of the world) I can hear almost nothing for 5-10 seconds.  The pressure in my head is so strong and forceful on standing that I have to stop in my tracks.  There is no choice.  I have to stop. I can't even speak at these times, only pause, wait then slowly, press on.
I’m back where I was 4 years ago. I feel like I am constantly wearing a very tight headband. 
Very tight. 
Pain…ever constant in my head, neck, shoulders.  Dull pain, or sharp pain.  Some pain- 98% of the time. 
I’m mad about it. 
I don’t know how to not be mad about it.  Or frustrated. Or sad.  I am all of these things. 
The thought, the mere thought of another brain surgery makes my insides wince.  I don’t know if that will be the answer, but if so, I don’t know how I will get through it a third time.  I also don’t know what I will do if Dr. K says there is nothing to do about it, just live with it.  I know nothing at this point.  In 10 days I will be in Houston looking at scans with him.  He will be hugging me and kissing my cheek like every time I’ve seen him before.  
Whatever the outcome, I will rally and face it boldly.  My face may be tear streaked, but my chin will be held high and I will not give in to pain or fear.  
I’ve changed over the past three years.  I’m stronger now. Stronger for myself. Stronger because I had to be.  I realize the only person that can advocate for me is me.  
So, I’ve got a lot of work to do. 

Deja Vu...A disagreeable familiarity or sameness.   The word totally fits. 

My Constricted Cranium...the Saga Continues. 

Tuesday, February 21, 2017

Sometimes I forget I have Chiari...and how remembering brings me JOY!

Sometimes I forget I have Chiari.
How is that possible?
Living with a disorder so relevant to my daily activities, it seems its presence would smack me in the face all day, every day.
Yet, it doesn't.
Many days, Chiari, or my brain, or brain surgery never comes to mind (no pun intended).
Then, other days, I am overwhelmingly aware of its presence, of my uniquely shaped skull and those things that once screamed out at me as limitations.

Today has been one of those days.  Having the flu, with coughing, body aches and chills really is not so fun.  Not fun at all.  As I reached my aching arms out from under my bedspread this morning, willing myself out of bed--it hit me. Hard.  Vertigo.  I fell back on the bed and braced myself until it subsided,  just head congestion, I thought. Eventually, I fell back to sleep.  Hours later, I shivered myself awake.  Freezing, I attempted to roll over and snuggle up to my husband when it hit me again. Debilitating vertigo.  Spinning, can't-move-so-hold-on-until-its-gone vertigo.

Then I remembered.  Last time I had the spinning dizziness this bad,  I was diagnosed with Chiari. Now almost five years later, again- the room kept spinning.  I allowed my body to go limp as I laid in my husband's arms and sobbed. The nurse in me knows this is likely brought on by the flu virus my body is busy fighting.  Rationally, I know the odds of this being some problem that could require another surgery are super slim.  Yet, just for a few minutes, I allowed myself to become a victim again.

My mind raced back over the past few years of diagnosis, the search for treatment, surgery, recovery, pain, losses, wins, physical therapy, massage, work, writing, loving, losing, supporting, giving up, giving in, letting it be, hating Chiari, hating my body, loving my body, the people I've met through this, the people I've lost through this, financial loss, financial gain, travel, headaches, MRIs, choking, walking, fatigue, energy work, body work, inner work....then I slept.

Upon waking, the tears had dried on my face making my eyes feel tight, my damp shirt clung to my body as I slowly and purposefully turned over, sat, then stood. On shaky legs, I steadied myself against the wall, crept slowly to the door and down the stairs.  The room never started to spin, I did not get dizzy. I did not fall down.

I did, however, drink a glass of water, make my way to the sofa, snuggle under a blanket, watch the sunrise and shed precious tears of gratitude.  Appreciation flooded my body as I realized, nothing has changed. I am still beating the odds.  My body is up to the task of living, loving, thriving (not merely surviving).

As my tears once again dried up,  I realized that I had forgotten for a brief time that I had Chiari. Like the way one forgets for awhile they they were abused, raped, abandoned or betrayed, stumbling intrepidly forward in life, with each feeble step putting distance between what was and what currently is.

Often, I am asked (sometimes angrily)  why I delve into the past, examine my life, dissect minute details and question, question, question everything.  "Can't you just be happy to have survived? Can't you just move on? Be grateful? Don't you realize that other people have things so much worse?  Well, you should just count your blessings." 

Don't get me wrong, I am not opposed to counting blessings. I do not write these thoughts in a manner of comparison or competition with the wins and woes of others.  I write, I ask and I examine because it feeds my soul.

Examining the why of it all, the wonder of it all, the pain of it all catalyzes the meaning of it all. Understanding leads to acceptance.  Acceptance soothes the barbs of sadness. Soothing evokes easy movement. Movement leads to increased energy flow. Increased energy flow ignites endorphins and soon there is an eruption of joy.

Having the flu reminded me I have Chiari and that my neurological system is delicate. Understanding that because of this, the flu and its remedies (like Tamiflu) affect me differently.  Accepting this helps me give into the process of healing, even the moments of sobbing defeat.  Soothing and being gentle with myself makes moving through the process easier.  As the movements occur, my energy is increased, I feel better and more invigorated...and I use that energy to spill my thoughts onto this page.  Writing brings me great joy.

So, yes!  Sometimes I forget  I have a Chiari Malformation... and remembering that I forgot brings me great joy.

Saturday, July 25, 2015

Pursue Life With Passion


Brain surgery blues?  Been there, done that...(still doing it most days)...But there is so much more to life than that part of who I am. 

Who are you?  Who do you want to be?  What is it worth to you?   

I ask myself these questions on an almost daily basis when I have to kill the desire in me to stay in bed and nurse a headache, dizziness or vision problems...some days the pain wins, but most life wins.  I whisper to myself, "Get that rebel inside you up and moving..."  So that's what I do, and it's not easy, but I want life more than I want  to  feel comfortable.   Pain is just pain, so unless it's knocking me down...I keep myself on track for the day.  This is why I do what I do now.  I coach other women to defy pain, emotional, physical, spiritual. Breathe new vigor into their life. Resurrect their inner rebel.  Live out loud.  AND--I LOVE IT!

I love the thought that my passion for life may be inspiring to my (very grown-up) children...After sleepwalking through an unlived life for twenty years, the past 5 have been a roller coaster of passion, travel, writing, creativity, brain surgeries, moves, new frontiers and not backing down from any challenge that came along the way. I love the ‪#‎bigmagic‬ that is continually flowing through my life. My hope is that my two creative, passionate, brilliant kiddos continue to pursue their dreams & live life on their own terms with the unique gifts they each bring to the world.

So how about you? Time to #resurrectyourinnerrebel?   I'm your girl.  Visit my website to schedule a strategy session...You can transform your life.

Monday, July 20, 2015

Writing Around In Circles Until The Truth Comes Out

Each time I start to write, thinking something profound will come from my words, 
Nothing does. 

I have all of these profound thoughts to share with the world about how it feels to live with Chiari, and how it feels to live with a history of emotional abuse, 
and how it feels to just want life to be "normal".

I stare here blankly at the screen, in my dedicated writing time 
and I'm blocked. 

I realize now that the block is not caused because there is nothing to say. 
The block is because so many words can't fit through my mind hole and filter down to my fingertips. 
Like rushing waves crashing agains a dam, waiting for the spillway to open up. 

All I feel is loss. 
For a person that is upbeat on a most regular basis,
A princess that has found her prince, 
An heiress to grace, 
All I feel is loss. 

No, no loved ones have passed away. 
No further tragedies have occurred. 
My loss is deeper, graver, 
Etched into my being. 

I'm often reminded of the tragedy of the unlived life. 
I vow with all that is in me that my story will be one that is lived out in technicolor. 
As I vow, a tear rolls down my cheek 
and I wonder. 

What hinders me in living my dreams full out? 
What keeps me small and still (at times)? 
And what is my purpose really to be? 

Is it to be the mouthpiece and the spokesperson for all who suffer with my same neurological disorder? 
Is it to help carry the broken to shore while mending their limbs? 
Is it to be strong and true and keep putting myself out there in relationships with friends who will never remain friends and family that barely remains family and a public who forgets heroes as quickly as they appear? 

Should my writing be more dramatic? More factual? More autobiographical? 
And quite honestly, does anyone really care? 

Should anyone care? 
Should it matter that children are starving in our country and all over the world? 
Should it matter than an unfathomable number of pregnancies are terminated in the womb? 
Should it matter that churches oppress people to the point of abuse...While using the name of God? 

Does my voice even matter anymore? 
Am I effectively ineffective? 

Where are those who vehemently supported me in leaving an abusive marriage? 
Where are they now but in the camp of my abuser? 
Where are they who supported me through my surgeries, held my hand when I was fearful, 
Eased my pain? 
Hiding behind their own wounds I suppose. 
The ones I inflicted when the great darkness came and I fell into loss. 

These thoughts go through my head and I slay them one by one. 
I cover the transgression with love and bid it farewell, 
To be neither seen nor dealt with again. 

And that works just great until another blow hits. 
Another pain surfaces. 
Another blow that hits below the belt and crumbles me into a pile of rubble. 
Then once again it smashes down and I begin the slow march to restoration. 

So today, with a headache and blurry vision, I am digging myself again from the rubble. 
Going through the motions-Getting from A to B. 
Getting the work done...and most definitely doing the work. 
The work of living, of pushing forward, of pushing through. 
I'm grinning and bearing it (with out the grin). 

I just wish it didn't have to be so hard. 
Honestly, all I want is one day without some sort of physical pain. 
The emotional pain I can handle (I think).
I just want to have no pain...just for today. 

Aren't I selfish?
I know...I'll do what really works. 
I'll just smile and say I'm okay.

Works every time.