After spending three solid days in testing and conferencing with my neurologist it is confirmed.  I did not want to “let the cat out of the bag” until I knew for sure but here I am.  I had hoped to NOT have to make this post but I will make it just the same.

For the past 6 months I have been experiencing rapid onset of disturbing neurological symptoms.  I mean to say CAT and out comes DOG.  I start a sentence and just go blank in the middle of it.  I have to stop often and rarely finish a sentence.  My eyes blink at different rates.  I have relatively no feeling left in my right arm and hand.  I choke on everything.  I wake up in the middle of the night choking so hard I see stars.  My ears ring constantly, sometimes so badly that I cannot hear people speaking.   Headaches that go on for weeks.  Pressure in my head that is so immense that I feel like my head might explode.  The only remedy for it is prescription pain killers.  I have started to stutter.  I black out for seconds at a time.  A few weeks ago I left the house without shoes on and arrived at my destination before I realize that I had none.

All of this adds up to a diagnosis of:

Frequent Unprovoked Seizures every 2-3 minutes (lasting up to 30 seconds) in the temporal lobe as documented by the EEG on Wednesday.

Arnold Chiari Malformation with a 10 mm herniation and a near complete blockage of the CSF flow in my brain with swelling in the right side.

Basically my whole brain is being squeezed and is swelling and is loosing its padding.  I am in more pain than I can even describe and its constant.  I have yet to find a way to relieve it except with narcotics.  One cannot live on narcotics.

From here I am on a drug trial which will last 6 weeks.  At that point the drug will be at its peak performance in my system.  Depending on what symptoms I am still showing on scans and in practical application we will decide whether to proceed with a craniotomy procedure to remove a portion of my skull and dura to allow my CSF to flow around my swollen cerebral tonsils.

The thing that I know is that I know too much.  I have done enough research about Chiari to be armed for Kyleigh (remember that Kyleigh has a 5 mm herniation also classified as an ACM) and I know what this means.  There is NO CURE for this.  This is a degenerative disease.  There is no FIX … no BETTER.  The best HOPE for Chiari patients is to control their patient and treat their symptoms because you cannot FIX the cause.  The only proposed treatment (the craniotomy) is a radical brain surgery in which they remove a portion of your skull.

I told Dr. Leung when I walked into his office that I had Chiari and he said “we’ll see” but I knew I did.  I knew it but I had hoped not.  I had honestly hoped for a tumor.  Something that was cut and dry.  Cut, medicate and done.  For me, for this person who like to “fix” things this is the worst possible scenario for my “need to fix” brain.

But, this will be, like everything else in our lives.  A journey.  I have been given this for a reason and eventually I will figure out the purpose.  I have learned a lot and been blessed with many great friends in the medical community.  I know, most of all, that if David faced Goliath… I can face this, and win.

This week has been a very sobering week.  We are trying to plan a last minute getaway to the gulf coast but are having a hard time finding somewhere to stay.  Before I look at the possibility of brain surgery and medications and all that I want to spend some time with my family.  I want to dig my feet in the sand and enjoy the ocean.  I want to watch my kids build sand castles on the same beaches that I used to run down when I was a child.  I grew up going to Pensacola, Navarre and Gulf Shores and sense we have NEVER gotten to take a family vacation I am determined to get there before … the inevitable.

If you are out there and praying.  I cannot ask you to pray for a miraculous healing just as I never asked for that for Kyleigh.  I can however ask, that you will prepare the hearts and minds of my neurologists, radiologists, specialists, neurogsurgeons, and all in the medical community who will touch my case.  I ask that you would pray for blessings for their lives and families.  That they would be shown favor.  That they would be given knowledge and wisdom beyond their years.  I ask that you would pray for peace for our family.  That God would grant us grace to see this journey through also and live to tell the story just as we have Kyleigh.  We know that it will not be easy.  But if I had to choose this journey for me or Ky… I am SO glad its me and not her.

Also… if you know of anyone who has a condo in the gulf area who might be willing to let us rent it from them (I have a TIGHT budget) please let me know!

For tonight… I am taking my meds and hoping not to experience any of the side effects that are on the pages they give you.  I am going to enjoy some pizza and my new guilty pleasure “Royal Pains” – the show on USA… its great if you have not seen it!  And wake up tomorrow to a new day, with a new resolve to make this new life work.

Good night.

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