Maureen Stoney Sharing her Trigeminal Neuralgia Story
Maureen Stone Story
18 years and counting – my life with Trigeminal Neuralgia
In March of 1995 I was going to dinner with a friend when I was stricken with a terrible headache. I thought it was one of my cluster headaches which began in college, but were then rare for me. But something about this one made me afraid. When I told my friend I need to get to the doctors right away she knew something was seriously wrong.
While we were waiting at urgent care, the right side of my face and head went completely numb. Let me tell you – that will get you to the head of the line. They rushed me in and gave me nitroglycerin and ruled out stroke and heart attack. I can’t remember what else happened but urgent care sent me home with a follow-up with my new Primary care doctor.
The next few days the numbness left and then came again. I experienced other strange symptoms and started having tests. My new Primary suggested MS right from the start. The numbness caused me to have trouble chewing and talking plus my leg was dragging and I had vertigo.
Over the next few months I experienced the excruciating pain of a spinal tap going bad, the even worse blood patch procedure to repair the spinal leak and numerous tests to rule out other diseases. In May I met with neurologists who confirmed an MS diagnosis. Gradually, over many months, all the symptoms faded.
As the facial numbness gradually faded, I experienced unbelievable jolts of pain. I started Tegretol immediately. Every few weeks it would seem to stop working and I would call the Neurologist who would increase the dose and tell me it would get better. It was then I learned about Trigeminal Neuralgia and learned that about 2% of MS patients experienced this pain. I started researching MS and TN and often came to my Neurologist with questions or ideas of alternatives I might try. He discouraged this and told me to stop reading. When I told my Primary doctor what the Neuro said, he said “let’s find you a new Neurologist”. My Primary has always encouraged me to be the most educated patient I could be. That was the beginning of a relationship with my Primary doctor that continues today – almost 20 years later. I am so grateful.
Over the next 10 years, I settled into a pattern that, gratefully, rarely included the sharp jolts of pain. Instead, I experienced slow burning pulses of pain and agonizing aching on the right side of my face. Some days my meds just didn’t work and I would just curl up in bed and pray for sleep. I began to use the narcotic meds they gave me to sleep, because they didn’t really help the pain itself. I switched seizure meds, got benefit, increased them over time until I could not tolerate the dose, and then switched again.
In 2005, I went to a surgeon for the first time. I was a family connection to the Neurosurgeon in charge of the Gamma Knife center in Syracuse NY. Gamma Knife was used mostly for tumors then, but was beginning to be used for TN. He saw me right away.
At my first Gamma Knife surgery in Feb 2006 they hit a nerve in my forehead when they were screwing the frame to my head and caused a flare up of pain. They hoped it would pass and took me to the MRI in another part of the hospital. It was an hour later before the Dr took one look at me and ordered a large dose of Neurontin. By the time I was in the Gamma machine the pain had eased. I was on the road by noon with my head wrapped like I had just had major surgery.
Over the next weeks it became apparent that the surgery had failed and in fact my pain was worse. My surgeon suggested they do it again. So I headed to Syracuse in June and had my second Gamma Knife. While the procedure went much smoother, it too failed to relieve my pain.
Now convinced that surgery could help me, I was referred to a surgeon in my hometown for a Balloon Compression or a Microvascular Decompression. I learned all I could about the surgeries. One was clearly intended to damage the nerve, like the Gamma Knife. The other actually goes in a separates the nerve from another structure that could be irritating or compressing it – usually a blood vessel.
In my city TN surgery is rare so neurosurgeons specialize, I went to a practice where one surgeon was the “MVD guy” and the other did the Balloon or Glycerol Rhyzotomy. So I saw them both. The MVD guy told me flat out that my MS diagnosis ruled out an MVD because the MS was the cause and it was rare that a blood vessel was obstructing the nerve. He said he certainly was not going to open me up to find out. The other surgeon suggested a Glycerol Rhyzotomy, where they use a long needle to deposit a Glycerol solution around the root of the nerve and let it soak in to numb the nerve root. The needle goes through the cheek to the brain so that, although it is outpatient and anesthesia is needed, it is not invasive.
So my Glycerol surgery was scheduled for early October 2007 at the large medical center. What could happen that actually TRUMPS brain surgery and causes it to be cancelled??? On October 1st I went to my Primary with a very unique problem breathing. It had happened once before when he was out of town and I was sent home from Urgent Care with a Nebulizer and a vague guess of allergic reaction. This time I made sure I saw him. After examining me, he sent me right to the emergency room. Several hours later with many tests, including a CT scan and Chest x-ray, I was told I would be admitted. I expected a pneumonia diagnosis but instead they said I had massive blood clots in both lungs. It was amazing that I survived.
It was a long recovery and I needed to take extra meds for the clots and the pain until I could finally have the Glycerol Rhyzotomy in August 2008. SUCCESS!!!!! Within days I knew the pain was gone. Tapering me off the meds was hard, I wanted to throw them away. I dealt with the relief of the pain at the same time as dealing with the realization of the miracle of surviving the Pulmonary Embolisms.
Dealing with humor in times of tragedy or fear is what I was raised with, and I so appreciate not being treated by my family with kid gloves. My father’s solution to most of our problems growing up was to wrap us in an Ace bandage and wait a few days to see if we were really hurt enough to see a doctor. When I was struggling with the early symptoms of the MS and TN, he sent me an Ace Bandage – one of the most loving gestures I could imagine. One day in 2008, my sister called and told me she was tired of friends commenting on what a sad story I had and what a miracle I was. She said “let’s face it, you aren’t really a miracle, you are an anomaly – you are a Freak of Nature”. Shortly after I received a package from her with a t-shirt embroidered with Freak of Nature. I wear it as a reminder that I have been through a lot – but I don’t have to take myself too seriously.
I had a blissful year with absolutely no pain for a full year, and a couple of month’s bonus. But the morning it came back was devastating. I had stopped making sure I had meds right on hand, and while I was sure I had kept some, the panic that occurred as I emptied my cupboards looking was immense. My fear only amplified when the secretary at my new Neurologist’s office insisted they only treated my MS and could not help me. I desperately called my Primary doc who was writing scripts as I walked in the door. Emotionally, I was crushed. The return of the pain sunk me into a depression. My surgeon rushed to get me in for a repeat Glycerol surgery. As a matter of fact, I was the first patient to ever receive a Glycerol Rhyzotomy at this particular hospital (something I DO NOT recommend). Misunderstood again by nurses who knew nothing about TN, I was doped up on Narcotics instead of seizure meds in the recovery room and suffered the pain in a haze of really not caring.
The surgery failed and I was left with significant numbness, including inside my mouth and all around my eye. I learned that this had its own diagnosis Anesthesia Dolorosa. When I looked it up this is what I read:
“Anesthesia Dolorosa is one of the most dreaded complications of neurosurgery and is considered to be non-reversible. It occurs when the trigeminal nerve is damaged by surgery or physical trauma in such a way that the feeling sensation in part of the face is reduced or eliminated entirely while the sense of pain remains.” (http://facial-neuralgia.org/)
Fantastic!– maybe my first neuro was right and I should stop looking stuff up. I already hesitated to tell people about my TN because they are terrified when they look it up and see “the suicide disease” and “worst pain known”. Now this…
So again I began a med regimen and began looking more into alternative medicine. I have tried a Naturopath and Acupuncture, which helped me feel more alert and normal but was too expensive to maintain. I went to a Upper Cervical Chiropractor, changed my diet, meditated and took hands full of supplements.
In 2010 I attended a Regional Conference of the Facial Pain Association in NYC. I met doctors whose specialty was Trigeminal Neuralgia and also got to spend the day with others with the disease face to face. It was wonderful, emotional and devastating all wrapped up in one. I should not have gone alone. The “worst case scenario” doctor from the Mayo Clinic looked at me with pity and true sadness when he said there was few options left to me – he pointed across the room to a surgeon who is one of the leading doctors in the country for TN. He suggested I talk to him and seek counseling for the emotional impact of the disease.
After the usually hoops of the Health Insurance system I was able to go to Long Island and see Dr. Jeffrey Brown. He did a special MRI and to my shock pointed at my test minutes late and stated that he could see a blood vessel and would do an MVD before anything else.
Although the MVD seemed to go smoothly, and the blood vessel was prominently around the nerve, the surgery was not successful. It was perhaps due in part to the damage already done to the nerve by the previous surgeries. However, the most difficult part was that my hearing was somehow affected. While hearing loss is a possible risk, what I experienced was an inability to tolerate competing noises. Background noise of any kind made me dizzy and nauseous. It was horrible, for months we assumed it was swelling, but eventually I had to endure a process of retraining my brain to tolerate noise by putting myself in situations where I became sick, then retreating to quiet to recover. I barely left my house. Later with a good set of earplugs I managed to be successful in most situations and could thwart further trouble by leaving quickly if triggered by a sound. Eventually, problems were limited to humming or droning noises such as motors, fans or heating systems. Attempts to return to work full time were impossible. I received accommodation at my job and worked partially from home and with a headset at work.
Again, increased pain meant increased medications and in October 2013 I had an emotional breakdown, I had had enough. My Primary put me out of work and in December I told him I could no longer put myself through the stress of trying to work and failing – it felt like self abuse. It was time.
I am grateful that, I had the opportunity to purchase my own Disability Insurance when I began as a government employee 12 years before. I will be ok on disability and finally will be able to focus only on myself and my health.
I struggle with depression, anxiety and fear. But mostly I keep getting up and facing the day, because I am grateful that TN does not keep me from enjoying my life like it can so many others. I am rarely triggered by outside forces. So it is the medication that causes me the most anxiety and affects my ability to function. Of course without the medication, I would be desperate and it is something I cannot even think of without making a plan for suicide “just in case”.
Nearly 20 years later, I refuse to let TN define me completely. But in the last year, I have stopped being afraid to let people know what it is and how it REALLY affects me. Thanks to the campaign leading to the First International TN Awareness Day, I “came out of the closet” about my TN. To me it was a risk of being treated differently, pitied or underestimated. Instead, I feel stronger.
Who know what will happen now. Maybe a new treatment or surgery will become available. With awareness, perhaps even a cure - if not for me, for the young people or thousands yet to suffer.
That’s my story!
Maureen Stone = Class of 1995
In March of 1995 I was going to dinner with a friend when I was stricken with a terrible headache. I thought it was one of my cluster headaches which began in college, but were then rare for me. But something about this one made me afraid. When I told my friend I need to get to the doctors right away she knew something was seriously wrong.
While we were waiting at urgent care, the right side of my face and head went completely numb. Let me tell you – that will get you to the head of the line. They rushed me in and gave me nitroglycerin and ruled out stroke and heart attack. I can’t remember what else happened but urgent care sent me home with a follow-up with my new Primary care doctor.
The next few days the numbness left and then came again. I experienced other strange symptoms and started having tests. My new Primary suggested MS right from the start. The numbness caused me to have trouble chewing and talking plus my leg was dragging and I had vertigo.
Over the next few months I experienced the excruciating pain of a spinal tap going bad, the even worse blood patch procedure to repair the spinal leak and numerous tests to rule out other diseases. In May I met with neurologists who confirmed an MS diagnosis. Gradually, over many months, all the symptoms faded.
As the facial numbness gradually faded, I experienced unbelievable jolts of pain. I started Tegretol immediately. Every few weeks it would seem to stop working and I would call the Neurologist who would increase the dose and tell me it would get better. It was then I learned about Trigeminal Neuralgia and learned that about 2% of MS patients experienced this pain. I started researching MS and TN and often came to my Neurologist with questions or ideas of alternatives I might try. He discouraged this and told me to stop reading. When I told my Primary doctor what the Neuro said, he said “let’s find you a new Neurologist”. My Primary has always encouraged me to be the most educated patient I could be. That was the beginning of a relationship with my Primary doctor that continues today – almost 20 years later. I am so grateful.
Over the next 10 years, I settled into a pattern that, gratefully, rarely included the sharp jolts of pain. Instead, I experienced slow burning pulses of pain and agonizing aching on the right side of my face. Some days my meds just didn’t work and I would just curl up in bed and pray for sleep. I began to use the narcotic meds they gave me to sleep, because they didn’t really help the pain itself. I switched seizure meds, got benefit, increased them over time until I could not tolerate the dose, and then switched again.
In 2005, I went to a surgeon for the first time. I was a family connection to the Neurosurgeon in charge of the Gamma Knife center in Syracuse NY. Gamma Knife was used mostly for tumors then, but was beginning to be used for TN. He saw me right away.
At my first Gamma Knife surgery in Feb 2006 they hit a nerve in my forehead when they were screwing the frame to my head and caused a flare up of pain. They hoped it would pass and took me to the MRI in another part of the hospital. It was an hour later before the Dr took one look at me and ordered a large dose of Neurontin. By the time I was in the Gamma machine the pain had eased. I was on the road by noon with my head wrapped like I had just had major surgery.
Over the next weeks it became apparent that the surgery had failed and in fact my pain was worse. My surgeon suggested they do it again. So I headed to Syracuse in June and had my second Gamma Knife. While the procedure went much smoother, it too failed to relieve my pain.
Now convinced that surgery could help me, I was referred to a surgeon in my hometown for a Balloon Compression or a Microvascular Decompression. I learned all I could about the surgeries. One was clearly intended to damage the nerve, like the Gamma Knife. The other actually goes in a separates the nerve from another structure that could be irritating or compressing it – usually a blood vessel.
In my city TN surgery is rare so neurosurgeons specialize, I went to a practice where one surgeon was the “MVD guy” and the other did the Balloon or Glycerol Rhyzotomy. So I saw them both. The MVD guy told me flat out that my MS diagnosis ruled out an MVD because the MS was the cause and it was rare that a blood vessel was obstructing the nerve. He said he certainly was not going to open me up to find out. The other surgeon suggested a Glycerol Rhyzotomy, where they use a long needle to deposit a Glycerol solution around the root of the nerve and let it soak in to numb the nerve root. The needle goes through the cheek to the brain so that, although it is outpatient and anesthesia is needed, it is not invasive.
So my Glycerol surgery was scheduled for early October 2007 at the large medical center. What could happen that actually TRUMPS brain surgery and causes it to be cancelled??? On October 1st I went to my Primary with a very unique problem breathing. It had happened once before when he was out of town and I was sent home from Urgent Care with a Nebulizer and a vague guess of allergic reaction. This time I made sure I saw him. After examining me, he sent me right to the emergency room. Several hours later with many tests, including a CT scan and Chest x-ray, I was told I would be admitted. I expected a pneumonia diagnosis but instead they said I had massive blood clots in both lungs. It was amazing that I survived.
It was a long recovery and I needed to take extra meds for the clots and the pain until I could finally have the Glycerol Rhyzotomy in August 2008. SUCCESS!!!!! Within days I knew the pain was gone. Tapering me off the meds was hard, I wanted to throw them away. I dealt with the relief of the pain at the same time as dealing with the realization of the miracle of surviving the Pulmonary Embolisms.
Dealing with humor in times of tragedy or fear is what I was raised with, and I so appreciate not being treated by my family with kid gloves. My father’s solution to most of our problems growing up was to wrap us in an Ace bandage and wait a few days to see if we were really hurt enough to see a doctor. When I was struggling with the early symptoms of the MS and TN, he sent me an Ace Bandage – one of the most loving gestures I could imagine. One day in 2008, my sister called and told me she was tired of friends commenting on what a sad story I had and what a miracle I was. She said “let’s face it, you aren’t really a miracle, you are an anomaly – you are a Freak of Nature”. Shortly after I received a package from her with a t-shirt embroidered with Freak of Nature. I wear it as a reminder that I have been through a lot – but I don’t have to take myself too seriously.
I had a blissful year with absolutely no pain for a full year, and a couple of month’s bonus. But the morning it came back was devastating. I had stopped making sure I had meds right on hand, and while I was sure I had kept some, the panic that occurred as I emptied my cupboards looking was immense. My fear only amplified when the secretary at my new Neurologist’s office insisted they only treated my MS and could not help me. I desperately called my Primary doc who was writing scripts as I walked in the door. Emotionally, I was crushed. The return of the pain sunk me into a depression. My surgeon rushed to get me in for a repeat Glycerol surgery. As a matter of fact, I was the first patient to ever receive a Glycerol Rhyzotomy at this particular hospital (something I DO NOT recommend). Misunderstood again by nurses who knew nothing about TN, I was doped up on Narcotics instead of seizure meds in the recovery room and suffered the pain in a haze of really not caring.
The surgery failed and I was left with significant numbness, including inside my mouth and all around my eye. I learned that this had its own diagnosis Anesthesia Dolorosa. When I looked it up this is what I read:
“Anesthesia Dolorosa is one of the most dreaded complications of neurosurgery and is considered to be non-reversible. It occurs when the trigeminal nerve is damaged by surgery or physical trauma in such a way that the feeling sensation in part of the face is reduced or eliminated entirely while the sense of pain remains.” (http://facial-neuralgia.org/)
Fantastic!– maybe my first neuro was right and I should stop looking stuff up. I already hesitated to tell people about my TN because they are terrified when they look it up and see “the suicide disease” and “worst pain known”. Now this…
So again I began a med regimen and began looking more into alternative medicine. I have tried a Naturopath and Acupuncture, which helped me feel more alert and normal but was too expensive to maintain. I went to a Upper Cervical Chiropractor, changed my diet, meditated and took hands full of supplements.
In 2010 I attended a Regional Conference of the Facial Pain Association in NYC. I met doctors whose specialty was Trigeminal Neuralgia and also got to spend the day with others with the disease face to face. It was wonderful, emotional and devastating all wrapped up in one. I should not have gone alone. The “worst case scenario” doctor from the Mayo Clinic looked at me with pity and true sadness when he said there was few options left to me – he pointed across the room to a surgeon who is one of the leading doctors in the country for TN. He suggested I talk to him and seek counseling for the emotional impact of the disease.
After the usually hoops of the Health Insurance system I was able to go to Long Island and see Dr. Jeffrey Brown. He did a special MRI and to my shock pointed at my test minutes late and stated that he could see a blood vessel and would do an MVD before anything else.
Although the MVD seemed to go smoothly, and the blood vessel was prominently around the nerve, the surgery was not successful. It was perhaps due in part to the damage already done to the nerve by the previous surgeries. However, the most difficult part was that my hearing was somehow affected. While hearing loss is a possible risk, what I experienced was an inability to tolerate competing noises. Background noise of any kind made me dizzy and nauseous. It was horrible, for months we assumed it was swelling, but eventually I had to endure a process of retraining my brain to tolerate noise by putting myself in situations where I became sick, then retreating to quiet to recover. I barely left my house. Later with a good set of earplugs I managed to be successful in most situations and could thwart further trouble by leaving quickly if triggered by a sound. Eventually, problems were limited to humming or droning noises such as motors, fans or heating systems. Attempts to return to work full time were impossible. I received accommodation at my job and worked partially from home and with a headset at work.
Again, increased pain meant increased medications and in October 2013 I had an emotional breakdown, I had had enough. My Primary put me out of work and in December I told him I could no longer put myself through the stress of trying to work and failing – it felt like self abuse. It was time.
I am grateful that, I had the opportunity to purchase my own Disability Insurance when I began as a government employee 12 years before. I will be ok on disability and finally will be able to focus only on myself and my health.
I struggle with depression, anxiety and fear. But mostly I keep getting up and facing the day, because I am grateful that TN does not keep me from enjoying my life like it can so many others. I am rarely triggered by outside forces. So it is the medication that causes me the most anxiety and affects my ability to function. Of course without the medication, I would be desperate and it is something I cannot even think of without making a plan for suicide “just in case”.
Nearly 20 years later, I refuse to let TN define me completely. But in the last year, I have stopped being afraid to let people know what it is and how it REALLY affects me. Thanks to the campaign leading to the First International TN Awareness Day, I “came out of the closet” about my TN. To me it was a risk of being treated differently, pitied or underestimated. Instead, I feel stronger.
Who know what will happen now. Maybe a new treatment or surgery will become available. With awareness, perhaps even a cure - if not for me, for the young people or thousands yet to suffer.
That’s my story!
Maureen Stone = Class of 1995
