The Agony of Trigeminal Neuralgia and Medical Malpractice
By Daryl Olster
The following is a brief account of my battle with a rare disorder, and the ensuing problems of a surgical procedure to address it. It may be worth reading just for information that could be of some value to those undergoing surgery.
Imagine waking up one day with a strange sensation in your face. A dull ache that comes and goes, moving over time from your forehead to your cheek to your jaw. You shrug it off as stress or fatigue, but it doesn’t go away. It gets worse as time progresses. It often turns into a stabbing, lancinating pain that feels like electricity burning your face. When that happens, you will stop dead in your tracks; you dread the slightest touch or movement.
That’s what happened to me when I was forty. I had no idea what was wrong with me. I had never suffered from migraines or any other chronic pain condition. I went to see a dentist, thinking it might be something to do with my teeth or gums. She found nothing. She also suggested I see a neurologist.
I did some research online (this was back in the days when the internet was still a novelty) and stumbled upon a somewhat terrifying diagnosis: Trigeminal Neuralgia. A rare and incurable disorder that involves a large nerve in the brain, the one that controls much of your facial sensation. The nerve forks into three branches in your face: one at the forehead/eye level, one around the nose level, and one down by your mouth and chin. Thus, pain can move all over one side of the face. The disorder can cause anything from a dull ache to unbearable pain in random bursts, triggered by anything from a slight breeze to brushing your teeth to sexual activity. A disorder that has been dubbed “the suicide disease” because there were people who took their own lives to escape the agony.
I hoped I was wrong. It is rare, with about 15,000 U.S. cases diagnosed each year (that’s less than 1 in every 20,000 people). It usually occurs after age 50 and more often with women than men. It happens more often on the right side of the face than the left, like mine. I hoped there was another explanation for my suffering, but the neurologists eventually confirmed my fears.
I wish I could say that the neurologists were helpful, but they weren’t really. They seemed clueless and indifferent. The first one I saw gave me a vague diagnosis of something called Atypical Facial Pain (AFP). He said it was a chronic condition with no clear cause or cure. He said it was different from Trigeminal Neuralgia (TN), which was more severe and episodic. He said he could prescribe me some Neurontin, a drug that was supposed to ease nerve pain.
I didn’t buy it. I didn’t think my pain was dull and unrelenting. Mostly, it was sharp and unpredictable. It moved around my face in seemingly random patterns. It could strike at any time and place; sometimes when I was eating, sometimes when I was talking, sometimes when I was doing nothing at all. It would freeze me in place and make me gasp in agony.
I saw other neurologists over the next five years, as the pain slowly worsened. The Neurontin and other drugs I tried didn’t do much; they either had no effect or wore off quickly. I would go to the ER sometimes when the pain became unbearable. But the hospitals couldn’t do anything for me either. They just sent me home; painkillers were not really effective for TN. The drugs just made me drowsy.
And the neurologists? They were useless. They didn’t seem to care or understand what I was going through. During one appointment the neurologist, a woman who looked like she had never smiled in her life, strode into the office. She was tall, had a stern face and pockmarked skin. She asked me what the problem was, and I told her that touching a certain part of my face triggered intense pain. She looked at me with a cold stare and hissed: “then don’t touch your face there.” That was it. I would have laughed in any other circumstance. This is what I was dealing with.
Finally, a new neurologist confirmed that I did indeed have Trigeminal Neuralgia. Something called Tegretol (carbamazepine) was prescribed, which he told me was the “gold standard” for treating TN. The medicine is known as an anticonvulsant, and is often used to treat other maladies, but for some unknown reason it helps relieve the symptoms of TN. At last, I had something that seemed to work.
Skip ahead five years. Tegretol was no longer enough. After years of taking the highest dose, the pain was returning with a vengeance. With the side effects, I could barely stay awake. I would drag myself home from work and fall asleep on the recliner for hours. My wife was worried and frustrated. She had three kids to take care of and a husband who was suffering from TN. One night, she cried and begged me to consider a surgical procedure. I had been avoiding it for so long. There were several options, all with risks, and too much uncertainty. Also, I hated the idea of being knocked out by anesthesia.
But I was kind of up against a wall now. I had to see the neurologist to talk about neurosurgery. He was as unhelpful as ever. He didn’t recommend any specific procedure for me. He seemed indifferent to my anxiety. I was left to do my own research.
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That’s how I learned about a “Percutaneous Retrogasserian Glycerol Rhizotomy (PGR)”. It sounds like a mouthful, but it was only a 20-minute procedure. The neurosurgeon would inject a small amount of glycerol into the brain, where the trigeminal nerve started. The alcohol would destroy the nerve fibers and stop the pain, hopefully for some years. I asked my neurologist what he thought of it. He shrugged and said: “Well, I wouldn’t choose anything riskier.” He never bothered to explain the pros and cons of each option.
The PGR was supposed to be a quick and easy procedure. I was asleep for 20 minutes while the neurosurgeon injected the glycerol into my brain. When I woke up, I had to sit still for a while to let the alcohol do its work. But something went wrong. I felt sick and started to vomit. The hospital had forgotten to give me something to prevent nausea from the anesthesia.
I was dizzy and nauseous for the rest of that terrible day. The hospital staff said I would be fine in a few hours, but I wasn’t. They sent me home anyway, because I should have been feeling fine, but I knew something was way off.
The next day, I realized what it was. I couldn’t hear anything from my left ear. It was like a constant hissing noise in my head. I couldn’t balance myself or focus on anything. My wife took me to an ear doctor, who confirmed my worst fear. I had lost most of my hearing in that ear. He called the neurosurgeon, who had no clue what had happened. The ear doctor gave me steroids, but they didn’t help.
I was devastated. I had traded the TG pain for partial deafness, and I felt miserable. I blamed myself, I blamed my wife, I blamed the doctors. I couldn’t eat or get out of bed for three days. I missed two weeks of work without pay. My doctor tried to calm me down over the phone, but he didn’t understand that this was real and not in my mind. My 6-year-old son came to see me, while I was confined to the bed, with his little friend from next door. He looked worried and confused, so I forced a smile and waved at him weakly.
I became desperate for help and for answers. My wife took me back to the hospital to see the surgeon. He tested my hearing and confirmed that I was deaf in the left ear. He looked nervous and upset. He started to walk around and talk to himself, trying to figure out what went wrong. He raised his voice and seemed to blame me for his mistake. He was almost in tears when we left his office.
We also saw an ENT specialist, who was supposed to be very good. He did more tests and told me that the hearing loss in my left ear was significant. I got the distinct impression that I wasn’t going to improve much from here. He injected some medicine into my ear, over two different visits, and gave me more steroids. But nothing helped. I didn’t get any better.
A few months later, after much research and no improvement, I decided to sue the hospital and the surgeon. They didn’t give me anything to stop the nausea and vomiting. They didn’t measure the right amount of glycerol, using a cisternography, to inject into my brain. They didn’t keep me still while I was throwing up, so the glycerol most likely splashed around, damaging not only the trigeminal nerve, but also the auditory and facial nerves. That’s why I had Bell’s Palsy and had to go to physical therapy. And that’s why I had lost my hearing in the left ear. The tiny hairs on the nerve that help interpret sound were burned off by the chemical. There was no way to fix that. It was inside my brain.
I thought I had a strong case for suing the hospital and the surgeon. My ability to hear from the left ear was gone, and my total hearing was significantly damaged. My quality of life was reduced. They had made mistakes. And my case seemed to be unique. I searched online and found no other examples of TN patients who had lost their hearing from such a procedure. It was a rare and very unfortunate outcome.
But I was in for yet another shock. I went to a law firm that specializes in medical malpractice. They listened to my story patiently and then told me the bad news. The hospital was part of a special taxing district that made them a government entity. That gave them “sovereign immunity”, which meant they were protected from lawsuits. The most I, or anyone for that matter, could sue them for was $100,000. And the lawyers could only take 25% of that. No lawyer would take my case for a maximum fee of $25,000. The expenses of hiring expert witnesses alone would be more than that. I had no chance.
I tried other law firms, but they all told me the same thing. It wouldn’t matter if someone died in that hospital due to medical malpractice or negligence. The hospital was immune from liability. What about suing the surgeon? He was certainly at fault. But he had no insurance. None of the neurosurgeons carried it because it was too expensive. They were too smart and knew they could protect their assets from a lawsuit. The surgeons were basically untouchable. I was the only one who paid the price. I was the only one who suffered.
As the statute of limitations approached, I gave up on suing the hospital and the surgeon. I had two years to do it, but I couldn’t find a way. I did my homework, I asked around, I got angry, but nothing. People told me I was wrong, that I could surely get compensated. But they were just talking. The reality was, there was no chance of bringing a lawsuit, let alone winning a medical malpractice case. No chance at all.
So, I learned a few lessons the hard way, and I want to leave you with some advice. If you ever need a surgeon you don’t know, do some research. Check their ratings, reviews, credentials. Find out what the surgery or procedure involves and make sure the doctors can describe every step to you. You need to be able to trust your surgeon. Try to get a referral or recommendation from someone you know well. Ensure the hospital takes care of the effects of anesthesia. Don’t take anything for granted.
And one more thing. Make sure the hospital is not part of a special taxing district or other government entity. Make sure it doesn’t have sovereign immunity that protects it from lawsuits. I know it sounds unlikely, but it can happen. I didn’t know what sovereign immunity was until it was too late.
I had another unrelated surgery a few years ago, and although the surgery went as planned, this time I made sure to avoid the previous hospital and choose a private one. I hope that by reading this, you can learn from my mistakes and do the same.
