Like many patients with Trigeminal Neuralgia Deborah’s symptoms started with mild sensitivity while eating, drinking or brushing her teeth so she thought it was a dental problem.
“The pain would go away for awhile and come back with a vengeance. It hits out of the blue and shuts you down.”
X-rays ruled out dental problems but her dentist said she had classic Trigeminal Neuralgia symptoms and recommended she see a neurologist.
Often called the suicide disease, Trigeminal Neuralgia is a facial nerve disorder involving the Trigeminal Nerve in the head, which can cause constant intense facial pain. It’s more common as we age but Deborah was only 40 when it began.
As recommended, Deborah saw a neurologist, who ordered an MRI, and while the test didn’t confirm Trigeminal Neuralgia, she prescribed Tegretol, often the first drug used to calm or block nerve pain.
“Tegretol worked for awhile but the pain came back stronger so each neurologist I saw kept increasing the dosage which made me so tired I couldn’t get out of bed and eventually Tegretol stopped working. I was in horrific pain every day and couldn’t imagine going through life like this.”
Deborah saw many doctors, talked to everyone she could and learned there were surgical procedures she could try including Microvascular Decompression which involves making an incision behind the ear to relocate or remove blood vessels that are pressing on the Trigeminal Root to stop the pain.
Another treatment option is called a Balloon Compression, in which a hollow needle is inserted through the face and into the base of the skull to destroy nerve fibers and reduce pain.
“I learned some people were helped by these treatments and others weren’t. It was very confusing. Plus they’re invasive and there’s no guarantee they’ll work.”
Deborah says, “Not once did CyberKnife come up as a non-invasive treatment option. Luckily my husband Joey saw CyberKnife Miami’s TV Ad. We immediately went on-line to the CyberKnife Center of Miami’s website, watched videos, read patient success stories and called for an appointment.”
The CyberKnife Radiosurgery System works by delivering high doses of very defined radiation beams from multiple angles with extreme accuracy targeting the Trigeminal Nerve, desensitizing the nerve.
“We’d never heard of CyberKnife or the CyberKnife Center of Miami. There was only one location and it wasn’t affiliated with a hospital so we were skeptical, but I thought I have nothing to lose.”
The CyberKnife Center of Miami is the only free standing CyberKnife center in South Florida. Any patient can go directly there for treatment and any doctor can send patients to CyberKnife Miami. Patients come from all over the world to be treated for nerve disorders, plus cancerous and non-cancerous tumors.
“My husband called the center because the pain was so bad I couldn’t talk. We were amazed at how helpful the staff was. They got me in right away. They explained everything in detail and did everything for me. They made it so easy. You pull up into their parking lot and go right in. It’s not like going thru the maze of a big medical center. They even set up my appointments for a contrast MRI along with a CT scan and explained the extreme importance of being able to see exactly and precisely where the radiation should be targeted. No other doctor even mentioned I needed that.”
CyberKnife Miami’s Medical Director and Board Certified Radiation Oncologist, Dr. Mark Pomper, along with the center’s medical physicists mapped out her treatment plan.
Dr. Pomper says, “When I first saw Deborah she could barely talk or move because it would bring on such horrific pain. She was incapacitated.”
“While there are no guarantees, Dr. Pomper says, CyberKnife has an 80-percent success rate with less than a 1-percent chance of side effects, which can include temporary or permanent facial numbness or paralysis.”
Deborah says, “The treatment took 45-minutes. Afterwards I felt a little queasy, had a slight headache, but by the next day, it was like a miracle. I was talking and feeling good. I had a couple of pain episodes but by the second week it was completely gone.”
Dr. Pomper says, “Patients suffering from Trigeminal Neuralgia should always consider alternative options to surgery. After trying medication, ask your doctor, is there a non-invasive treatment available? Typically, patients need only one CyberKnife treatment. If the pain returns, a second treatment may be considered but we’ve been very successful with just one treatment.”
Deborah says, “If it wasn’t for that TV Ad I’d still be going from doctor to doctor trying to find an answer. The whole healthcare system is scary. You have to educate yourself and
don’t just do what your doctors say.”
“I felt useless, spent a lot of time in bed and was forced to miss a lot of work. I lived in pain for two-and-a-half years. I understand why it’s called the suicide disease and that’s why we tell everyone we can about CyberKnife.”
“I’m extremely fortunate. I don’t take small things in life for granted any more. This week there was a birthday party which I would have missed if not for CyberKnife. Nor could I have gone to my son’s many basketball games. I’ve got my life back and my family has me back.”