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Be The Brain That Ends The Pain

 

by Pamela Unverzart

 

Yes, I admit the vain side of me wants to delete the picture you see attached: me all wired up and ready for EEG and MRI take-off. That’s okay. I have to admit I look pretty darned silly.  But that moment of vanity dissipates quickly with the deep satisfaction that followed -- with the knowledge that I participated in the possibility of my own cure, for your cure, for the cure of all those that may suffer with trigeminal neuralgia in the future.  I stepped out of the isolation I’ve become accustomed to, took a deep breath, and embarked on an adventure of hope. 

First, let me emphasis it wasn’t an easy decision. As my TN pain has progressed through the years, I’ve become more and more isolated.  Fear keeps me behind walls – behind walls and away from the myriad of triggers that have the possibility of setting in action those all too familiar attacks of facial pain.  “Facing” the wind, air conditioner vents, eating and eventually merely talking became my enemies.  I knew them well as precursors of hours of unrelenting agony.  Those hours haunt my very existence.  My “what-ifs” rule my life.

I labored for months over the idea of being a participant in Dr. Neubert’s research, Mapping Towards a Cure: Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain.  I understood the possibilities of a cure for the disease, yet the what-ifs still existed.  What if I couldn’t make the two hour drive I’d have to make to get to the McKnight Brain Center for the study?  What if I was having a really bad pain day?  What if the study assistants, the EEG or the MRI triggered a severe attack?  What if I had an attack so severe I had to pull the plug in the middle of the study? What if I couldn’t drive home afterwards?  And oddly and the strongest what-if of all -- What if my brain ended up not being useful to the study after all? 

So I took the long path to decision. The possibility of a cure won out and I reached out to Dr. Neubert to sign up.  In the end all of my what-ifs turned into could-have-beens and never weres.  I was able to make the drive.  I was having a bad day, but it didn’t put me down. After all, bad days are pretty much my norm. I accepted it and just kept on going.  The study assistants were careful and caring and did all they could to not touch my face or trigger the pain further.  My hair got goopy from the EEG gel, but it, nor the MRI, made my pain worse.  There was a moment of fear that laced through me when I noticed the air conditioning vent was blowing cold air directly toward my face as I lay on the MRI bed, but the assistants quickly covered the vent and eased my fright.

Curious of how the actual procedure occurs? Considering volunteering but dealing with your own what-ifs? I hope I can alleviate some of your worry.

Minus the drive it took from home and back, the entire study took approximately two hours. Most of that time involved the paperwork I had to fill out, which was pretty painless.  I was then prepped for the study by the research assistants -- three lovely, thoughtful PhD students.  I was fitted with that beautiful EEG cap you see in the picture above.  I can’t really say that was fun, but it certainly wasn’t bad.  The worst part was the goo it left in my hair afterwards.

After the EEG cap was fitted, the full procedure was explained to me. I have to admit I didn’t understand it all.  My nerves were needlessly on edge and I truly wasn’t having a very good pain day.  I kept telling myself having a rough pain day was a good thing.  After all, wasn’t the purpose of the study to map the pain sequences in the brain?  With that in mind, pain was gain.

I worried as well about the MRI study. Being a bit claustrophobic, MRIs are not my favorite tests.  I relaxed when I was told my entire body wouldn’t be in the tube.  Phew!  Worry abated.  Yes, the MRI was loud.  They’re always loud.  Honestly, because I was focused on the screen in front of me and documenting my pain level, the noise faded into the background.  I was always in contact via microphone with the research assistants.  Should the worst have happened and my pain cycled into the intolerable level, I could have stopped at any time.  I was in control.  The worst never happened, and before I knew it, the MRI was complete.

The entire scan was over with way before I thought it would be. Within 20 minutes of entering, I was being slid back out of the machine and moving on to the removal of the EEG cap.  Within another 15 minutes I was on my walk back to the car for the drive home. A hat would’ve been nice to cover the goo that still stuck to the ends of my hair, but my ever present scarf helped with that.   (BTW, the goo washed out easily later.)

The worst part of the entire test was the myriad of questions I wanted to ask but didn’t. I was full of them on the way home. What did my brain look like? Could they tell I have TN by the information they acquired? Was my scan good enough for the study?  The list went on and on and on.  And then two weeks later, the Facial Pain Research Foundation posted Dr. Anderson’s update on the current research studies and I saw the picture of  a participant’s brain.

I doubt the picture is of my brain. I really have no idea whose brain it is, but from the write-up, I do know it was the brain of a participant in the study – someone like me – someone with TN – someone who suffers with the sudden onset of horrific facial pain.

Staring at these images I was brought to tears. I KNOW THAT PAIN! Although it’s unlikely, that COULD BE MY BRAIN!  Suddenly all the previous worries leading up to my participation seemed trivial.  I could see in living color that TN pain exists!  Speculation is gone; it’s been documented. The brain knows my personal demon.  The pictures don’t lie.  And because of me and whatever information was discovered from my brain scan, a cure is ever closer.  I feel hopeful and hugely humbled to have been a part of finding that cure.

Dr. Neubert’s project is in need of additional brains to study. It’s imperative to truly map the TN pain sequences and to reach the study’s goals. If you’re out there wondering or considering, please pick up the phone and call.  You can even send an email if talking is a pain trigger.  Volunteer your time. Dare to look a little silly.  Your vanity will forgive you.  It may pull you out of your comfort zone, but imagine the possibilities:  A possibility of a life without TN -- a lifetime of pain-free tomorrows.  The research requirements for participation and contact information is listed below.  Please reach out today.  Don’t just think about it.  Act on it.  Who knows? YOURS may be the brain that ends the pain. 

To be eligible you must be: 

 

  • 18-65 years old

  • Suffer from Trigeminal Neuralgia…diagnosed with Trigeminal Neuralgia

  • Prefer Classical TN (Type 1) and Atypical TN (Type 2)

  • Average Pain in the moderate to severe range

  • No additional major health problems

  • Be able to go to Gainesville Florida and spend approximately 4 hours

  • Fluent in English (written and spoken) 

 

Exclusion:  

 

-Unable to complete a magnetic resonance imaging (MRI) scan due to implanted or un-movable metal material in your body or severe claustrophobia.  

 

For further information about volunteering for this study call or email: 

 

Dr. John Neubert

 

(352) 273-5687 or This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 


 

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