Crysta's Brain Surgery

Crysta found one of the best Trigeminal Neuralgia doctors in the US to review her case. He found another vein compressing her nerve and recommends doing another brain surgery. Crysta will undergo her 3rd brain surgery for Trigeminal Neuralgia.  We would like to relieve Crysta with as much financial burden as possible. Travel expenses alone will add up quickly (the brain surgery will be in California and she has to be in LA 3-5 days pre surgery for testing and then 14 days after surgery) in addition to the large medical bills from the surgery. Anything you can possibly contribute, no matter how seemingly small, will be of great help and deeply appreciated.  If you are unable to contribute monetarily, please pray for Crysta's recovery.  Let's show her what we can do when we come together in support of one another. 

Any donation will make a difference in Crysta's journey.



Trigeminal Neuralgia (TN) is a rare chronic pain condition that affects the trigeminal nerve which carries sensation from your face to your brain. For Crysta the right side of her face is affected and lives daily with a sharp knife like stabbing through her upper and lower jaw. The most basic functions such as eating, drinking, brushing her hair, putting on makeup and brushing her teeth can set her pain off and put her in unbearable pain that can take a week to break the pain cycle. 



 


Crysta’s Fight for Her Life with Trigeminal Neuralgia AKA “The Suicide Disease”

One very warm and sunny summer day in 2008, Crysta was driving to work when she was hit with the most extreme tooth pain she had ever felt. She immediately stopped at the closest gas station to get ibuprofen. She was living away from home that summer in Ocean City, Maryland so seeing a dentist out of state wasn’t an option. The pain would come and go through that summer and when she got back home and went back to college the pain went away.

By the fall semester in 2009 the pain returned. She had taken more ibuprofen then she can even remember, trying to make the pain go away (thinking it was tooth pain). Crysta thought maybe she was grinding her teeth and started wearing mouth guards, but the mouth guards were making it worse.  She also become extremely sensitive to noise during this time and could barely make it through classes due to the noise around her or people talking. Crysta was finally seen by a dentist at college who said her teeth looked fine. Knowing something was wrong she asked to see an oral surgeon. Thankfully the oral surgeon was closed the day she called, because she would have let them pull out all of her teeth until the pain went away.

Bring on the 2010 fall college semester and all hell broke loose. She couldn’t sleep, she couldn’t eat, she couldn’t drink. Crysta went straight home to her PCP. They referred her to a TMJ specialist who she had to wait weeks to see, so back to school she went and the pain got worse. At that time she was living in the sorority house and had the most amazing sisters. They moved a chaise lounge into her bedroom so she could try to sleep sitting up (any pressure on her head would set the pain off). She always thought cold helped her pain, so through the night when pain would wake her up she would run to the mini fridge and grab a cold Natty Light to stick on her face! She would wake up with at least 10 warm Natty Light’s in her lap!

The night before she headed home for the TMJ specialist appointment the best thing that could have ever happened, happened. Crysta’s sorority sister who was in nursing school came running up to her at work and said she knew what was wrong and that she had Trigeminal Neuralgia! WHAT? They researched and read about it for hours and she just couldn’t even believe her eyes.  Crysta went to the TMJ specialist appointment and as soon as her and her mom walked in they both knew this was not the right place. When the doctor came in Crysta told him she didn’t have TMJ and that she thought she had Trigeminal Neuralgia. He laughed, yes literally laughed at her. He did his exam and then told her she didn’t have TMJ, but she needed to go get a CT. Since she had done so much research she knew why he was sending her there, but her poor mom didn’t. He was ruling out a tumor. That was the longest 24 hours of her life, waiting to hear if she had a tumor or not. Thankfully, she did not, but sometimes she wishes she did just so people could visually see something is wrong and not just dismiss her pain.

Crysta finally saw a neurologist who started her on a few different seizure medications to try and control the nerve. Every day she would cry in pain, but had to put her big girl pants on and go to class, her internship, and work. With the daily pain she was in, Crysta was shocked and still has no idea how she graduated from college and on top of that had her best semester ever.

The neurologist agreed it was time to see a surgeon. Luckily one of the top surgeons of Trigeminal Neuralgia was in Pittsburgh! While waiting for her first surgical appointment she went through some of the worst attacks. The one she can vividly remember  was after Christmas when she stayed at her sister’s apartment and drank an entire case of water. Yes water. For whatever reason swallowing would ease her pain during an attack. By the afternoon of the next day she was admitted to the ER. They had given her everything under the sun and she was still screaming in pain. Her mom says Crysta eventually fainted and her parents put her on the bed to sleep for a short period. Then, she was discharged and sent home with pain medication. Unfortunately what people don’t realize is that pain medication is not very effective for nerve pain. Can you imagine pain medicine doesn’t work for pain? 

 In January of 2011 Crysta had her very first brain surgery called a microvascular decompression. She woke up PAIN FREE! She was chewing gum and chomping on ice like nothing was ever wrong with her!

Within a few years of the surgery the pain started to come back. By 2014 while working on a project in Cleveland, Crysta faced one of her worst attacks ever. Her friend rushed her from work to the local ER where they sent her away with pain medicine. That night Crysta did not sleep and as soon as she got her car she drove straight home and then to the hospital.

By February of 2015, Crysta had her second brain surgery. She again woke up pain free. Sadly within a few months the pain had returned. Next her surgeon suggested doing what is called a glycerol rhizotomy. Ultimately that is injecting a needle through the cheek to the nerve endings to kill them and interrupt the pain signal to your brain. Within a few days, she knew that had failed.

The doctors were at surgical hault for next steps to avoid damaging her nerve. Luckily Crysta never damaged her nerve, because when you do there is no return regardless of the outcome. Crysta was put on a pain patch that nearly destroyed her life and did not control her pain at all. Between 2015 and now she has seen more doctors than you could imagine in the greater Pittsburgh/Cleveland area. It was suggested she try a spinal cord stimulator or botox, but her insurance denied both of those and doing those out of pocket was not an option.

Fast forward to today and Crysta has exhausted all local options, non-surgical options, infusions, medications, acupuncture, massage therapy.. you name it! She lives daily on very strong medicines that control every minute of her life while still in horrific pain. Thanks to TN support groups Crysta found out about Dr. Mark Linskey at UCI in Irvine, CA. She researched him for over a year, before finally deciding she had to see him.

On June 26, 2019, just a few days shy of her 31st birthday, Crysta and her mom flew to LA to meet with Dr. Linskey. Dr. Linskey saw another vein beneath her trigeminal nerve that he believes is the cause of the continued pain. He has suggested another brain surgery, #3 for Crysta. This was a breath of fresh air for all of us to finally have someone who can help Crysta.