“It changes your life, diminishing little things along the way, until you finally realize how much is missing in your life.”
That’s how Denise Mullen of Richmond, MA felt about her battle with trigeminal neuralgia. She saw three different neurologists, was put on medications, but nothing seemed to be working until she found Dr. Kamal Kalia at Baystate Medical Center.
Denise’s first attack occurred 13 years ago while at work at a local veterinarian hospital. She was 58 at the time.
HER FIRST JOLT
“I was in a meeting with my boss and coworkers and when I turned my head to say something, I got this big, painful jolt on the left side of my face. Then it happened again a couple of minutes later,” Denise said.
She called her dentist for an appointment, but he found nothing wrong. However, after explaining more to him about what was happening to her, his response was ominous back in April 2010.
“He told me that he had once seen a case that fit my description called trigeminal neuralgia, adding ‘I hope it isn’t this,’” Denise said.
THE NEXT “BIG BOMB”
Next she found herself in an ENT’s office (ear, nose, and throat) where he “put a tube up my nose and down my throat, but again nothing was found, even after sending me for an MRI and CT scan.”
Since it “wasn’t threatening at the moment,” Denise stopped seeing doctors for an answer, until the next “big bomb,” as she called them, hit. By this time, it was early 2012.
“I was in the shower one day and turned to put my face under the water spray and it felt as if my head exploded. It was the most excruciating, painful thing I had ever felt. I walked out of the shower knowing something had to be terribly wrong,” she said, noting she has a high threshold for pain and people didn’t realize what was happening when she had an attack.
THE NEUROLOGISTS’S DIAGNOSIS
Back to the doctor again, Denise went to see her primary care physician who - after explaining her symptoms as “facial pain like being shocked for two minutes while at the same time feeling as if a sharp knife was stabbing me in the face” - suggested she see a neurologist.
After describing her symptoms to the neurologist, she knew right away that Denise was suffering from trigeminal neuralgia. She told her the first course of action was to prescribe medications for the pain, such as gabapentin and carbamazepine, on a trial-and-error basis. But they only worked for a while, and she sought out another neurologist for help who again tried different medications. She also was prescribed medicine to treat anxiety driven by the “big bombs” and never knowing when another “zip or zing” would occur.
“At that point, along with my husband, Marty, we started to research the web for answers and learned about Gamma Knife treatment for trigeminal neuralgia patients, so I made an appointment at Tufts Medical Center, where they offered the procedure. We learned it was only good for about five years,” Denise said after going to Boston in April 2012.
“I decided to continue with my neurologist and with the medications thinking, ‘This is brain surgery, if I can continue with the medications and avoid it, then let’s continue to do that,’” she added, noting her neurologist was “totally against brain surgery.”
THE “BIG BOMBS” RETURN
Then the “big bombs” started to return in 2015. Denise always had smaller “zips and zings” which lasted just seconds compared to the “big bombs” which would go on for up to two minutes - one episode while she was driving and another feeding their chickens that was so bad she dropped to her knees on the ground screaming. Another big bomb found her sitting on the bathroom floor for about 45 minutes. During that time, she was trying to calm herself by focusing on her breathing and trying to get her pills into her mouth, which she couldn’t open and actually used a toothbrush to push them through.
“That was the worst one I ever had,” Denise said about the bathroom ordeal.
It was now April 2016 when her husband was reading The New York Times and saw an obituary for Dr. Peter Jannetta. The obit went on to describe how he had invented microvascular decompression, also referred to as the Jannetta procedure, which was a cure for trigeminal neuralgia. She also found herself in remission for several years and did nothing at that time, thinking she would have to go to Pittsburgh, where the late doctor’s clinic was located, for help.
HER TRIP TO SPRINGFIELD
“The pain eventually returned. It never really goes away. I figured someone had to be working with Dr. Jannetta and we found a list of a few doctors in New England who had. So, we went to Springfield and met Dr. Kalia. But again, I told him I would get back to him....it’s brain surgery,” she said. The groundbreaking procedure to relieve facial spasms involves moving blood vessels away from the trigeminal nerve, alleviating chronic pain and spasms in facial muscles.
It was while visiting with yet a third neurologist in May 2022 that Denise noticed a pain clinic in the same building that had been recommended to her by a friend.
“It was at the pain clinic that I found a doctor who knew more about trigeminal neuralgia than any of my previous neurologists. After another MRI, he told me I had an artery in my head pushing against my trigeminal nerve and there was nothing else he could do for me, that I either had to live with it for the rest of my life on medications or get it taken care of with surgery,” Denise said about making the decision to return to Springfield. The doctor, however, was able to review her pain medications and changed the dosages and when to take them, which she said helped for a short time.
TIME FOR SURGERY
“He told me about Dr. Kalia in Springfield, and I told him I had already been to visit him. I knew the first time I met Dr. Kalia that if I had the surgery, he would be the one doing it and never researched any other neurosurgeons. It was a blessing that I made the decision because, after seeing Dr. Kalia, I began having outbreaks every day for three weeks before the surgery. My husband said this was the affirmation that I was doing the right thing and needed the surgery,” Denise said about the procedure performed on October 24, 2022.
“Between waking up every night in pain and never having clarity from lack of sleep and the side effects of my medications, I feel like a normal person again [after surgery]. It was instant relief when I woke up from the surgery and other than having a big, bad headache that I knew would go away, I was cured. And, along with it went the big, dark cloud that was always hanging over my head waiting for that next zinger or zap,” she added.
Denise noted people need to know there is a cure for trigeminal neuralgia and that Dr. Kalia can help them.
“Some people have it on both sides of their face, and I just can’t imagine not being cured and I feel so bad for those now dealing with the disease,” she said.
A HOPEFUL LIST
At the suggestion of her husband, Marty, Denise Mullen began to compile a list of things she would no longer have to worry about, and how her life would return to normal, after undergoing the Jannetta procedure at Baystate Medical Center to cure her trigeminal neuralgia.
“I received that list in a letter that said, ‘This is a list I kept adding to prior to surgery. I’m so happy!’” said Dr. Kamal Kalia, the only neurosurgeon in western Massachusetts to perform the procedure. “I had never received anything like it before, it was just so unique and compelling.”
Denise called it her “List of things I will experience or be rid of, after 10/24/2022,” the day of her surgery.
Among the nearly 40 items included on the list were many simple things taken for granted every day, but for someone with trigeminal neuralgia become impossible to enjoy.
TO EXPERIENCE ONCE AGAIN:
- Kissing my husband
- Smiling completely
- Eating on both sides of my mouth
- Taking showers
- Getting my teeth cleaned
- A real good yawn
- A real good sneeze
- Energy and ambition
- Swimming underwater
- Having my lips waxed
TO BE RID OF:
- No breakthroughs
- No more walking around off balance
- No more being so tentative while walking down staircases
- No more moving around like an old woman
- No more being tired all of the time
- No more waking up in the middle of the night thinking I might touch my cheek by mistake
- No longer holding pain patches to my jaw
- No more worrying about an insect landing on my cheek in the middle of the night (it actually happened, and my husband thought that I was having a stroke)
If you’re experiencing pain and stress like Denise was, reach out to our team about trigeminal neuralgia diagnosis and treatment. There is hope for a pain-free life and a return to life’s simple pleasures, like a real good sneeze or swimming underwater.