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pain defined
Pain is a signal in the nervous system indicating something isn’t right. It’s bothersome feeling such as a prick, a sting, a burning sensation, or an ache. Pain can be dull or sharp. It’s a discomfort. It can be intermittent, chronic or acute.
The word ‘Peyn’ is believed to be first used in the 13th century from the Old French ‘peine,’ derived from the Latin ‘poena’ meaning “punishment, penalty” and that from Greek ποινή (poine), generally meaning “price paid.”
In my native Tamil language, pain is articulated four different ways; வலி, (Vali, physical pain) வேதனை (Vethanai, agony) துன்பம் (Thunbam, Adversity,) and உபாதை (Upathai, discomfort).
My karma was such that I had to endure gradual pain for more than six months. Initially, the indication of pain was assumed as a dental matter. By August 2022, the unidentified pain became worst. It was no longer a dental issue. Notwithstanding, I can look back today and attest to myself I handled the situation as best I could and remained mostly positive. This story is to share with friends and family near and far that have been concern and sending the love and prayers. In a way, I am writing this passage so I don’t have to repeat the agony of telling a painful story. 😜
distractions
A peculiar indication was brewing in late spring of 2022. I had slight pain in my left lower jaw. I guessed it must be a tooth at the back.
As the pain intensified and worsened, I made a dentist appointment. The X-ray on the identified tooth was not clearly defined, yet it had “some issues” or an infection. The choice was to explore further, including a root canal procedure or an extraction. Since it was an upper tooth way back, I decided to have it removed—end of that story.
A couple of weeks passed, but the pain lingered around that area. It was acceptable. After all, I yanked a tooth out. But after two months, the sudden, sharp, and lingering pain persisted. I began to question my patience to heal. I am second-guessing the decision to extract the tooth. Could it be something else?
My inner voice, betrayed by day-to-day work responsibilities, kept the pain distraction at bay. My photography efforts in early 2022 earned four significant exhibitions. My team and workplace ran our annual charity golf event. All these and more kept me going while I waited for a solution and something to change in my health challenge.
August 12, 2022
Another significant undertaking concurrently happened at that time was the intense paperwork for a business acquisition. This process involved attorneys, accountants, bankers, and my partners. All this activities intensified at the height of summer. The pain warnings I continued to ignore, began to amplify each day until they finally collided with the head-on reality.
On August 12, 2022, I became the Principal owner of GS Enterprises, Inc, which owned and operated SteamMaster Restoration and Cleaning and Colorado Basement Systems. At the closing, I signed stacks of legal paperwork, the most ever signatures I have put on paper in one single day. By this time, my pain can no longer be hidden. The severe bouts were happening more frequently. All in all, I put up a good spirit of excitement at closing with my partner and friend, Matt Monica. Above all, I am ever grateful to the opportunity given by my former boss and partners Gary Gilman and Julie Stoxen for this boon.
Dental Dashes
The signal of time for action gets louder each day. The condition was no longer an option to be ignored; no distraction could make my pain tolerable. No creative image capture can calm the electric shock intensity buzzing in my face.
Still unsure of the real issue, I made another dental appointment. This time, a different Dentist X-rayed more areas to diagnose. Yet, it was unclear. No infection and nothing new was identifiable on my left jaw. He referred me to an Endodontist.
This did not happen immediately, so after more wait time, I managed to secure an appointment. Endodontists have more specialized expertise. They may perform an average of 25 root canal treatments a week. I had a more comprehensive panoramic scan done, but again, the conclusion was vague, and I was referred to another Dentist—this time to an oral maxillofacial surgeon.
Yet, another scan! Unable to pinpoint anything he could make out from his findings, the surgeon requested me to re-approach the Dentist that had placed a crown on one of my teeth with a root-canal done in 2016. He believed the permanent cement used back then might be causing an infection. “No other possible indications,” he said.
Dr. Ramsey Warner, a respectable young dentist and friend in Denver, gave me an appointment the next day on a weekend after hearing my plight. He “numbed me good” with dental anesthesia, and worked on removing the tooth crown. However, he did not find any issues related to the tooth or the gum. Another bummer.
Then the pain suddenly came! Despite the numbness, I had a bout of attacks that moment, seated. Dr. Warner stopped, moved my dental chair upward, and then told me, “this is not a tooth problem; I am afraid you have Trigeminal Neuralgia.” I was later instructed to reach out to a Neurologist to find a solution.
Trigeminal Neuralgia
Weeks go by, enduring an indescribable pain. My sanity and patience is tested to the utmost. I finally got an appointment being on a cancellation waitlist. By this time, the intensity of pain I have begun to take more frequent bouts. I started to track how many minutes each time in between and how many seconds it lasts. Now I realize why they call this the “suicide pain.”
Waiting in physical agony, without any medication or relief, makes one surrender in helplessness. Even though I faced TN without self-loathing, I finally broke down once, not because of my fate or remotely questioning why me? But because of the intense, excruciating pain.
Triggers & Reactions
Attacks of Trigeminal Neuralgia (TN) may trigger by the most unassuming reasons. A gentle touch of the face, encountering a light breeze, smiling, washing, shaving, brushing my teeth, blowing my nose, and talking. Drinking and eating too. At the same time, even without any of the above, as long as the heart beats, and pulsating on the blood vessel close to the nerve, the motion sends “Pain!, Pain!” signal to the brain. No rhyme or justifying reasons.
One of the toughest thing to jointly experience is the sympathetic pain passed on to my co-workers. In management meetings, my talks would come to a halt every now and then, indicative of the facial assault.
Cussing in Bengali
A friend from LA taught me some nastiest cuss words in Bengali. I used some, along with the motion, when speed-brushing my teeth. Those were my desperate pain-management distractions. Perhaps a few time. It didn’t work. Despite the physical, mental, and emotional torment, I kept believing this was only transitory and this, too, shall pass.
“The American Association of Neurological Surgeons (AANS) describes Trigeminal Neuralgia (TN) pain, also known as tic douloureux, as the most excruciating pain known to humanity.”
Neurologist
My appointment date with the Neurologist was still three weeks out. I called in a few times to check for any cancellations I could substitute, but nothing.
A photography friend from a collective I belong to recommended an acupuncturist in Denver. Since I was consistently seeking a solution, I took his advice and made an appointment. This Chinese doctor is very learned in Eastern and Western medicine. For the first time, I had an acupuncture treatment lying down with needles all over my body. The only noticeable difference after the treatment was a sore arm. After the first treatment, he said it would roughly take 8 1/2 months to treat Trigeminal Neuralgia in a holistic approach and for general health. Had he said one month, I would have considered it. Maybe.
In the meantime, my situation became more acute. I was admitted to Vail Health emergency room. I went there out of desperation but also with intent. I asked for an MRI (Magnetic resonance imaging) scan. This step was proactive. I wanted to be prepared and not waste more time on a solution when seeing the Neurologist. That way, I would not have to schedule the MRI and delay even more time. At Vail Health, I was given Carbamazepine, a nerve suppression medications. This was the first time I took medicine for TN, but it was ineffective. It just made me drowsy and sleep most of the time.
On August 22, 2022, late evening, I got a call from the Neurologist’s office. Someone cancelled and there was an opening the next morning at 9:30 am. I took an early drive about 1.5 hours to Steamboat Springs. I impressed the Neurologist, Dr. Vargas for bringing the MRI image disc and report for her perusal. After several tests and diagnosis, she confirmed I had TN.
It was here that I was given Oxcarbazepine, the “nerve pain blocker.” Finally, I had temporary relief! I was also given another medicine to relax the jaw muscle. However, the combination of Oxcarbazepine and Gabapantine causes severe dizziness, double vision and knocks me out within 35 minutes of consumption. Dr Vargas later told me to stop the Gabapantine.
Dr. Vargas asked me to make an appointment with Dr. Matthew Mian at Swedish Hospital in Denver. She even made a call to him. Dr. Mian came highly recommended, but this next baton pass also had a waiting period before I got to meet the Surgeon.
The trigger, the anticipation and excruciating pain are mentally and physically debilitating. The unknown barrage of attacks impairs my general functioning ability, let alone my quality of life. How much longer can this go on?
Neurosurgeon
The much-anticipated meeting with Dr. Mian was very pleasant and assuring. The diagnosis was precise yet Dr. Mian wanted more details and requested a more comprehensive ‘Contrast’ MRI scan with dye. He talked about the three known options of TN surgery. Given my age and otherwise better health condition, Dr. Mian steered toward Microvascular Decompression (MVD) for a better and longer term outcome. The two other surgery options were Gamma Knife treatment and Percutaneous stereotactic rhizotomy (PSR).
From meeting him the first time, I liked Dr. Mian’s demeanor, his passion for his profession, and his absolute confidence. I trust him without reservation. I also appreciated his team of assistants during the visit. They take their job seriously yet with care and compassion.
But the waiting continued. Two weeks after our meeting, I had to return to Denver for the second MRI requested at Swedish Hospital, where I will have my surgery. I had a cage over my head during the MRI, so I did not move for the entire 25 minutes lying inside the scan chamber. They offered a headphone and asked, “what music?” I blurted, “Neil Diamond.” 🫢. They played it. “I am, I said” was one of my favorites. Ok, I had a relaxant tablet too. I admit. It was claustrophobic to have that cage on my head the entire time, and I was not to move. I have never done any form of surgery in my life. I was anxious.
Surgery
My head was throbbing. The Microvascular Decompression (MVD) was performed by creating an opening in the back of my skull to expose part of the area at the base of the brain. More about MVD surgery here.
The monitors were tracking my vital signs and but I remember being hungry. The nurse had somehow ordered some vegetarian food beforehand. When I gained more awareness, I felt like eating. I haven’t had any solid food since the day prior. Without any reservations, I chomped at the grilled cheese sandwich 🥪. I drank, I had a desert, and then I paused. I realized I had not taken Oxcarbazepine since the morning. No pain? I ate almost everything on my food tray cautiously this time. No pain, nothing!
The day after
I got up and was in so much pain, not from TN but from the surgery itself. I was given Oxycodone. I even succumbed to Morphine because of the sharp pain in my head and unable to sleep. The incision behind my ear will take time to heal. I was completely out of balance with Vertigo when I tried to move. Everything was still wired. One nurse said calmly, “That was brain surgery, you know. It will take a little time for your incision, and the sensitive area worked on to heal.”
On day two, I had breakfast and lunch again with no trace of Trigeminal Neuralgia! I cautiously brushed my teeth but even then, no TN pain. This is slowly sinking in for me. It’s hard to comprehend, but true. My IV and bladder control bag was removed. I stayed one more night and was discharged the day after.
My Vertigo condition subsided and became unnoticeable after two weeks. Now in winter, I have to wear a beanie hat to keep my head from hurting going in and out of the house and at work. The incision area needs to heal more. Other than that, I am feeling great!
The American Association of Neurological Surgeons (AANS) describes Trigeminal Neuralgia (TN) pain, also known as tic douloureux, as the most excruciating pain known to humanity.
This documentation is firstly for me and to bring some light on Trigeminal Neuralgia as a severe and painful medical condition. It records my time and experience going through it. I also wanted to share my story to help others so they can look into all options to find a solution.
I am grateful to my Guru, Dr. Mian, his team at Swedish Hospital in Denver, my family, the monks in Kauai, my co-workers, friends near and far for their support and care.
Source: American Association of Neurological Surgeons (AANS) • Matthew Mian, MD website