We've Exhausted All Options

Well, a lot has happened in the life of the Riley family since I last posted here.  The boys are older, I have more wrinkles, Justin has less hair. Ha!  But one thing has remained constant.  My headaches.

When I was in my mid-20's, I was diagnosed with episodic migraines.   They happened maybe once or twice a month. I would use a migraine med, take a day to rest, and then be back in the game. This continued through my 20's, and as I headed into my 30's, they began to increase in frequency and severity.

I don't think I really noticed at the time how much medication I was taking.  As the headaches began to increase to almost daily, I increased medicines to daily.  I was never without a bottle of Aleve, Advil, or Excedrin on me at all times.  I took it every 4 hours to keep the day going for years.

3.5 years ago, I went to France on a mission trip.  Even before we boarded the plane, my head was crazy.   We flew overnight and then hit the ground running when we arrived in France.  By the time we went to dinner and small group, my head was at a level 10. Vomiting, dizziness, pounding, sensitivity to light and sound.  I had to call a time-out, and our host and pastor graciously took me back to the hotel to medicate and sleep.  The next 9 days I regularly medicated to make it through, but when I got back home from the trip, it took 19 straight days for an intense headache to go away.

I remember the look of worry on my husband's face as he said very sternly, "You have to find a neurologist.  This is not normal."

That began the journey I have been on for the last 3.5 years.  The quest to eradicate this monster that had taken over my life.

Without medical intervention, I literally have a headache EVERY SINGLE DAY.

In the headache world, there are "migraine protocols."  These are steps you follow to try and find the treatment for your migraines.   There is no cure.  There is no "root cause."  There is no understanding of the science or the why behind why so many people suffer from migraines.  But BILLIONS of people do, and they are particularly prevalent in women.

I started the protocol with the first neurologist and long story short after a year with her, I ended up in the ER. As I lay under the bright lights getting IV meds, balling my eyes out, I explained my journey to the doctor and nurse. I was worse a year later than when I started.  One of the medications that apparently "works for everyone" led me to lose almost 20 lbs, much of my cognitive function, and to sink into despair .. all while making my headaches WORSE.  The doctor said "As soon as you get out of here, you need to find a new neurologist. You are way over medicated. I've seen this cycle over and over again."

God led me to a great neurologist who took me off all those meds and continued on the protocol.  We tried all the mainline preventatives.  And we tried so many alternative treatments too!

Acupuncture, chiropractor, dry needling,  yoga, herbal, ashwagandha, vitamins, supplements of all kinds.  If there was an "all-natural" product on the market for migraines, we tried it. Excessive elimination diets. Read hundreds of books.  Searching for the elusive triggers.

We tried hormone therapy thinking that maybe my hormones played a role.

We tested for everything we could think of and more.

The most significant form of relief came in the form of two large needles that injected a numbing solution into the nerves in the back of my head.  Sweet, instant relief! Sometimes I can get almost 7 headache-free days from them.  That's how I am able to teach and preach.  I get the injections a couple of days before, every single time.

But they are incredibly painful and super expensive.

And still, the daily headaches persist.  Some days at a level 2-3 which is no medication but every few days escalating to a level 8-10, injecting myself with shot and entirely shutting down life.  Pain is the constant noise in the background of my life.

I have the sweetest kids in the world.  I can't tell you how many of these precious notes they have written to me while I'm sleeping. I can't tell you how many cups of water, blankets, stuffed animals they have brought me to show their love when I'm hurting.

When I have to look my little boys in the eyes and explain once again that mommy can't play right now.  Or cancel plans. Or miss their activity.  Or disappoint them. What kind of life is this for them? What kind of life is this for me?  And for my husband?

I have prayed countless prayers for God to heal me and to continue to give us wisdom and direction to find healing. Like the widow, knocking every day asking and asking. My journal is filled with pages and pages of prayers and emotions surrounding my headaches.  Some days I think I can't do it anymore and every day God says "I can."  And He has!  He has been incredibly faithful to see me through each day.

Three times I pleaded with the Lord to take it away from me.

But he said to me, 

“My grace

 is sufficient for you, for my power

 is made perfect in weakness.

 Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:6-9

About a year ago, my neurologist suggested we start exploring more radical treatments.  It took me a long time to get to the point of saying yes.  I explored ablations which could either be the burning or the freezing of the nerves in my head, but there is a very real risk that the pain could be worse from those procedures and the results are temporary.  I couldn't do it.  It wasn't worth the risk to me.

And that led me to Dr. Blake.  

One of the top headache specialists in the country.  It took me months to get in, and the day I went, I was on a 9-day streak of an unbreakable migraine.  She asked my history, and I sobbed my way through explaining the last 4 years.  She had me draw a diagram of the pain, she did an exam of my head, and certain spots she would push her fingers into gave me white hot flashing pain. 

I cried, and I told her, "Nothing works for me. Nothing.  Everything that works for other people has never worked for me.  Why are my migraines out of control?"  And the words she said pierced through the darkness and the confusion for the first time.  She said "because you don't have migraines.  Not traditional ones.  You have a condition called occipital neuralgia, and from what I can tell, it's severe."

Boom.  It has a name!  The white-hot pain in the nerves of my head.  The flares. The neck pain. The scalp that literally feels like hair follicles are on fire. The excessive vomiting.  The burning.

She went on to explain that while traditional migraines are chemical related, mine are physiological or anatomically related.  That's why conventional migraine meds didn't work.  It's why eliminating triggers that fire the chemicals linked to migraines headaches didn't work.  My nerves are being compressed by muscle, inflammation, fascia, scar tissue, etc. and are under constant irritation.  It flares, and I beat it back down, but it never goes away.  Chronic Daily Headache caused by Occipital Neuralgia.

Treatments that work?  Nerve Blocks.  Yep. That's what works for me.  Chiropractor. Yep.  Ice.  My best friend.  I wear this ice hat every day.

But for those that have tried everything, there is one treatment option that could potentially bring a cure or relief, nerve decompression surgery.

A surgery much like carpal tunnel surgery except on the back of your head that decompresses the nerves.  They remove any muscle, scar tissue, inflammation, etc. that could be blocking the pathway for the nerves or damaging them in hopes that in 6,9, or 12 months the nerve will regenerate healthily and function properly again.

It's considered experimental.  For those of us who have exhausted all options, it's the only choice.  The condition I have will never get better without intervention.   I can spend a lifetime on pain management trying to control the symptoms, or I can take a chance that this surgery will work.

Dr. Perry is considered one of the top surgeons who perform this surgery, and we both felt during the consultation that he was the guy to do it.  He's an expert, he's an incredible surgeon, and he gets good results.  He is personally hand picked by Dr. Blake, and when we met him and did the consultation, we could see why.  He is thorough.  He was detailed.  He was frank about what my expectations would be and the uncertain nature of this procedure.

People fly from all over the country for this procedure. 

Here's a video of both of them featured on Good Morning America if you are interested:

There are varying results, and it's hard to say until he gets in and sees the nerves, but he expects for me to achieve 80-90% reduction of headaches after healing is complete in a year.   THAT WOULD BE INCREDIBLE.  But you know what? I believe God can do even better!

My surgery is on Friday, July 13th!   The last 2 weeks have been a flurry of preparation.

I got cardiac clearance through an EKG and a Stress Test.  I gave 13 vials of blood.  I took a 3-hour psychiatric evaluation.  ALL GOOD!

Justin and the boys surprised me with my new surgery recovery chair!  It's the biggest, most comfortable one they could find.  You should hear them sell the features!  It's got power lift up and down for the legs and the headrest.

Daddy made sure all week that the chair was comfy and ready

I'm picking up prescriptions tomorrow and getting the lower back of my head shaved. Eek!

We are cleared for take-off.  Surgery starts at 7am and will last 4-5 hours.

Will join in praying for the following?

  • No surgery complications with anesthesia or otherwise

  • Specifically with nausea and vomiting (my arch enemy)

  • Wisdom for Dr. Perry when he sees the nerves in my head

  • For controlled pain during recovery

  • AND FOR IT TO BE 100% SUCCESSFUL!

A few years ago, my best girl sent me this verse and prayed it over me and for me almost daily.  It is my prayer for this next season of my journey.

20 

Now to 

him who is able to do far more abundantly than all that we ask or think, 

according to the power at work within us,

21 

to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

He is able to do far more than we even know to ask! I believe that God can and will heal me.  I believe in the waiting, He is good and faithful.

Love,

Luann