Priscilla Raymond is someone who is all too familiar with the extreme pain caused by trigeminal neuralgia. Raymond’s journey when facial pain caused her to visit her primary care physician. Her PCP originally thought it was a sinus infection, but after ruling that out, suggested that she make an appointment with a dentist. Because of the type of pain, and the area that it was in, her dentist believed that she had trigeminal neuralgia.
Raymond followed back up with her PCP and let him know what her dentist had said. Her PCP agreed that she might be experiencing TN and put her on Epitol for the pain. The Epitol worked for a little while, but when she began experiencing breakthrough pain, her physician sent her to see a neurologist in Waco.
Priscilla saw Randy Gardell, M.D. who confirmed that she was suffering from trigeminal neuralgia. Over the next couple of years, Priscilla managed her TN with medication and did not experience much pain.
“After being on the prescribed medicine for a few years, I no longer felt pain,” said Raymond. “I asked if I was in remission, and he explained that there was no way of knowing since I was still on the medication. In order to find out, I would have had to severely cut my dosage back or be removed from the medicine altogether and I was not ready to take that chance. The pain was too great to deal with again.”
After a couple of pain free years, Raymond’s pain returned and her medication dosage was increased. She did not like the side effects the pain medicine was having on her cognitive skills, but she needed the three Epitol and four Lyrica pills daily to cope with the pain.
On the morning of May 4, 2016, Raymond’s battle with TN took a turn for the worse when she had an extremely bad flare up while getting ready for work. The pain was too much for Raymond to handle, and her husband called her neurologist and got an appointment for that day.
It was determined that Priscilla needed to seek additional treatment for her TN since the pain was becoming more than what could be handled by prescription pain medicine. He suggested that she look into CyberKnife treatment.
“I was a little bit familiar with CyberKnife,” said Raymond. “My husband had read about it online and Dr. Gardell had mentioned it once before when we discussing treatment options. I had always wanted to be able to treat my pain with medicine, but it was becoming too much to handle, so I was ready to explore other options.”
On May 11, Priscilla had her first CyberKnife appointment. “My husband, Max, and I came expecting a consultation and had no idea of when we would be asked to return for imaging or the CyberKnife procedure,” she said.
“When Mrs. Raymond came in, it was obvious that she was in a tremendous amount of pain,” said Stephen Brown, M.D., Radiation Oncologist. She had received excellent medical management by her neurologist, Dr. Gardell, but was not responding to her neuroleptic oral therapy. The pain was so severe that it was affecting her ability to speak and I knew right away that we needed to treat her quickly and I was going to do everything I could do to help her.”
As they were leaving the center, one of the staff members asked if they had a place to stay for the night. When Priscilla and her husband said that they did not, the nurse picked up the phone and called a local guest house that provides lodging for families of patients in treatment in the area, to see if they had a room available. They did, and Priscilla and her husband were off to check in and get some rest.
The next morning Priscilla arrived back at the center and was taken to the hospital to have her CT scan and MRI done. By the time she returned from the hospital, the physicians were already reviewing her information and looking at her scans. Less than five minutes later, she was asked to come back the next afternoon for her CyberKnife treatment.
“I was overwhelmed,” exclaimed Raymond. “Max and I came thinking we were going to meet with the doctor for a consultation and be told to come back some time in the distant future to have something done, and here we were about to get it all done within the span of three days. I was so happy and relieved. I wanted to cry, but it hurt too much!”
Priscilla returned the next afternoon for her CyberKnife treatment. She said the treatment was quick, easy, and painless. She was told to lie still and relax as the computer-controlled arm of the CyberKnife moved around her head, delivering the radiation treatment.
It did not take long for Priscilla to notice the difference the CyberKnife treatment made in her TN. Her pain level was down in just a few days.
“Some three or four days after the procedure it occurred to me that I didn’t have any pain,” explained Raymond. “It is day to day. Some days I have no pain. Some days I have trouble eating. But none of the pain is as bad as I was experiencing before treatment.”
Priscilla Raymond’s journey with trigeminal neuralgia is not over. TN is incurable, so the goal is to live your life with the diagnosis as pain free as you can. Priscilla is happy with her decision to get CyberKnife treatment for her TN, and feels relieved knowing it is a treatment option that is there if she needs it. Receiving CyberKnife was a positive experience for Raymond and she would highly recommend it to someone who is suffering from TN and looking for help.
“I cannot say enough about the doctors, nurses and staff, the technicians in the imaging department, and the folks at Seton League Lodge for the wonderful care I received from them,” said Priscilla. “They had answers to questions we had not even formed yet. I have never felt so cared for by a medical facility.”