Treating Trigeminal Neuralgia with CyberKnife Technology: Carl’s Story

August 8, 2018, is a day that Carl Papp says he will not forget for the rest of his life.  It was the day he took his last dose of medication for his trigeminal neuralgia, an agonizing disorder he had been fighting for over two years.

Trigeminal Neuralgia (TN) is considered by medical experts to be one of the most painful disorders known.  It is a chronic pain condition that affects the trigeminal nerve (a three-branched nerve that carries sensations from the face to the brain and controls facial motor functions such as biting and chewing).  TN is characterized by episodes of extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.  The intensity of pain can be physically and mentally incapacitating.

Carl is someone who is all too familiar with the severe pain caused by trigeminal neuralgia.  The 64-year-old Illinois resident was diagnosed with TN in 2015.

Papp’s journey with TN started over three years ago when facial pain caused him to visit a neurologist.  Carl originally thought the pain might be dentally related because he had dental work done about two weeks prior to the pain starting, but a follow-up visit to his dentist ruled that out.  His dentist took x-rays and determined that the pain was not caused by anything dental and suggested that he visit a neurologist.

Papp made an appointment with a neurologist and was diagnosed with trigeminal neuralgia, something he had never heard of before.  His neurologist put him on Carbamazepine, a medicine that treats seizures and nerve pain.

“The medicine worked ok, but I had to take a lot of it,” said Papp.  “After trying one medicine that didn’t work so well, my neurologist put me on Carbamazepine and that seemed to do the trick for me, but I still had to take so many.  As soon as the pain started, I’d take one or two pills, but sometimes the pain would be so bad that I would take up to 12 pills a day.”

After a couple of years of the same treatment regimen and taking numerous pills to manage the pain, Mr. Papp started to wonder if the side effects he was having were from his prescription.

“I was having a hard time with my memory,” said Papp.  “I wanted to get off the medication because I began wondering if the medication was messing with my brain.”

Papp let his neurologist know that he did not like the side effects the medicine was having on his cognitive skills and was interested in other options for treating his trigeminal neuralgia.  At the same time, Papp himself started researching treatment options online and found information on CyberKnife.  He wanted to learn more, so he made an appointment at Illinois CyberKnife.

At his initial consultation with Arica Hirsch, M.D., board-certified radiation oncologist and Medical Director at Illinois CyberKnife, Papp learned more about what the CyberKnife® Robotic Radiosurgery System was and how it treated trigeminal neuralgia.  He liked what he heard, particularly the 85% success rate CyberKnife had with treating trigeminal neuralgia, so he decided the treatment was worth a try, especially since the pain was getting harder and harder to battle through.

“Even with the medication, I was in pain every day,” said Papp.  “Sometimes it was minor, but still, I had pain of some kind of every day.  I was honestly tired of it.”

After years of struggling with facial pain, Papp was ready for the next step.  He felt comfortable and confident at Illinois CyberKnife and said Dr. Hirsch, and the entire team at Illinois CyberKnife, were wonderful and did an excellent job explaining everything and preparing him for his treatment.

Papp scheduled his appointment and was treated for his trigeminal neuralgia on November 2017.  He said the treatment session was quick (only lasting about 35 to 40 minutes), easy, and painless.  He just had to lie still and relax as the computer-controlled arm of the CyberKnife moved around his head, delivering the radiation treatment.  After his treatment, Papp said he felt fine and had no side effects whatsoever.

In the months following his treatment, Papp’s symptoms were a lot less and the pain was not as intense and not as often.  He was also able to start cutting back on medication.

“I had hoped that it would be closer to the three or four-week range when my pain subsided, but that didn’t happen,” said Papp.  “When I went back to Dr. Hirsch for my follow-up appointment, we talked about where I was with my pain and I told her I was about 50% of my previous pain level and medication, but I was still hurting.  Dr. Hirsch scheduled a follow-up visit for me a couple of months out and asked me to take notes every day of my pain level and how much medication I was taking.”

Papp took Dr. Hirsch’s advice and created a spreadsheet to track his daily medication intake and pain level.  He split his spreadsheet into three categories – morning, afternoon/early evening, overnight – and recorded every pill he took and how much pain he was feeling on a scale from one to ten.  He did this every day until the pain went away.

“I think keeping track of this gave me an idea of what direction I was going in,” said Papp.  “Even though the CyberKnife didn’t work as quickly as I hoped it would, it was working and the spreadsheet gave me something to gauge how things were going.”

Papp’s pain and discomfort did end and he took his last pill about nine months after his CyberKnife treatment.

“Dr. Hirsch was right.  She was saying all along that every person reacts to things differently and as long as I was going in the right direction with less pain and less medication that I didn’t need to give up,” said Papp.  “My journey took a little longer than I expected, but it worked.”

Today, Carl feels fantastic and he says it is like he was never diagnosed with trigeminal neuralgia.  Receiving CyberKnife treatment was a positive experience for Papp and he would highly recommend it to someone who is suffering from trigeminal neuralgia and looking for help.