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One day in 1998, the pain started. It felt like a toothache.
The pain was severe enough that Rozina Lalji went to a dentist.
When the dentist couldn’t find any dental issues that would cause the pain, he said she may have trigeminal neuralgia. That was the beginning of an 18-year ordeal for Lalji, a seemingly endless quest for relief.
Trigeminal neuralgia is a condition where the trigeminal nerve in your head is compressed -- by a tumor, a blood vessel or a clump of arteries and veins – which wears away the protective coating around the nerve. Without that protective sheath, activities such as chewing, putting on makeup, talking, even walking into a gust of cold air, would trigger flashes of excruciating pain.
“When you would chew, it was like the worst pain in the world,” says Lalji, of Palatine, who at times experienced pain so severe it would knock her unconscious. “It was constant. Even if you just open your mouth. You’d see food and you would start hating food. You would hate to talk. You would hate to smile.”
No relief in sight
The fact that she was severely allergic to the medicine used to treat the condition complicated Lalji’s search for relief. After two weeks on the medication, her head and neck swelled. She developed rashes and a fever. The medicine had muted her pain, but was no longer an option.
Scans of her skull showed no tumors compressing the nerve. She was young – in her early 30s – so doctors were leery of performing the delicate operation necessary to relieve the pressure. What if something went wrong and she ended up paralyzed or there were other complications?
Lalji, who lived in Pakistan at the time and worked as a nurse, became severely depressed. She stopped eating. Sometimes the pain would disappear for a while. But it always returned.
A light at the end of the tunnel
In 2001, Lalji moved with her husband and children to the United States, hoping to find an effective treatment.
Lalji was uninsured, but found a doctor who allowed her to pay cash for each visit and would give her samples of a powerful pain medication. Lalji could get through the day, but built up a tolerance that required increasingly higher doses of the medicine to be effective.
Eventually, her green card came through. She was able to buy health insurance. In 2008, her primary care doctor noticed her liver function was off. She told the doctor about the addictive medication and the extremely high doses she had been taking.
The doctor referred her to a Chicago-area surgeon who said Lalji was a candidate for Gamma Knife®, a procedure where precise beams of radiation are aimed at points in the brain. For trigeminal neuralgia, the radiation would be used to create a scar on the nerve that would cushion it from the pressure, hopefully reducing the pain.
“If you don’t do it, I’ll take away my life.”
In 2010, she was ready for surgery. As they were prepping her for the procedure, which involved drilling bolts into her skull to hold her head steady in a brace during the surgery, she had a severe allergic reaction to the medicine used to render her unconscious during the procedure.
“(The surgeon) said, ‘We can’t do it,’ because of the reaction. ‘I can’t put screws into your skull, I can’t do that when you’re awake,’” Lalji says. “I was begging him to do it. I said ‘if you don’t do it, I’ll take away my life.’ I’m literally begging him. I’ve been through so much pain in my life, I can take it.”
Reluctantly, the surgeon agreed. Lalji was conscious and remained awake throughout the procedure, bolts and all.
For Lalji, the suffering was worth the end result. She felt relief within two hours. But her problems weren’t over yet.
Six months later, her husband had a heart attack. Then, Lalji’s pain started again, at first returning only a couple times a year. A follow-up scan showed the scar was no longer visible. Sometimes, the scar heals, Lalji was told.
Around this time, she learned her husband had developed cancer. Lalji stopped seeking treatment to focus on his health.
Eventually, her pain became as frequent and severe as ever. With her husband on the mend, Lalji again sought relief. She found Dr. Tibor Boco, medical director of neurosurgical services at Elmhurst Hospital. His appointment calendar was booked, so she went to his office without an appointment and sat in the waiting room, desperate.
“Dr. Boco came out and wanted to explain that he couldn’t take me, but he looked at me and said, ‘I’m taking you,’” Lalji says. “I was unable to speak, I was so miserable. I was so down, so low. I would eat so slowly, one meal would take me an hour.”
“Dr. Boco’s demeanor was so loving, so caring. He is the complete package. I was blessed that he came out and saw me.”
Lalji asked Dr. Boco to give her medication for the pain, even if she was allergic to it. But Dr. Boco asked her to get through two weeks without, and then he would operate on her.
The procedure was a microvascular decompression of the trigeminal nerve. It involved opening Lalji’s skull and inserting a tiny cushion between the trigeminal nerve and the artery or vein that was compressing it.
Dr. Boco performed the surgery in April 2016. The morning after, Lalji was talking and eating without pain.
The road ahead
But that wasn’t the end of Lalji’s journey to wellness. As expected, the surgery had disrupted Lalji’s balance and caused muscle weakness, so at first she couldn’t walk. Complicating matters further, the medicine she was given post-operation caused hallucinations so deep she didn’t recognize her own husband.
Doctors adjusted Lalji’s medication and uncovered a vitamin deficiency that could have impacted Lalji’s recovery.
Soon, Lalji began physical therapy and was finally on the road to recovery.
Now, at age 48, Lalji feels strong and, most importantly, lives without severe pain.
“Pain needs to be taken care of,” Lalji says. “I tried to commit suicide because of the pain. I don’t want people to think there is no cure for this.”
“Don’t give up on life,” she says. “When you’re pain free, it’s like you have your life back.”
Learn more about orthopedic services at Edward-Elmhurst Health.
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