I had a good life: I am intelligent and ambitious. I have a great family, used to love life and lived it to the fullest. My career soared as well. I moved up from an entry level to a SVP in only a few short years. I was fortunate enough to meet a wonderful wife, inheriting a 3 year old step-daughter and later, a daughter of our own. Our dream was to enjoy life with our kids, have a nice home, travel and perhaps start a business venture of our own eventually.
And then…eight years ago, out of the blue, I began experiencing some toothache-like pain and promptly went to the dentist. The dentist put two temporary crowns on the two offending teeth, but it got worse and worse. Even when he installed the permanent crowns on, it continued to get worse. Long story short, I ended up being passed back and forth from dentist to oral surgeon to endodontist to ENT doctors and still the pain persisted (probably more than a dozen pass offs like that).
The “toothache” became so bad that I was frequently vomiting and felt like I had a severe flu. Once, while traveling overseas, it interrupted a client luncheon and I was taken to the ER. They found some infection and removed it. And yet the pain continued.
After the years passed, I eventually had all four back molars pulled and to my surprise, it did not stop the pain. Sometimes I would get “bolts” of pain that would knock me to the floor and occasionally I would pass out but the pain was continuous. It just varied in intensity. One oral surgeon finally recognized the area I was pointing to (all along!) involved what he thought was one of the cranial nerves involving the vagus nerve–the longest of the cranial nerves, supplying the nerve fibers to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and the intestinal tract as far as the transverse portion of the colon. The vagus nerve also brings sensory information back to the brain from the ear, tongue, pharynx, and larynx.
I was then referred to a neurologist who treated with anti-convulsant and anti-depressant medications. But the pain continued an upward spiral. Eventually after being in the hospital repetitively, I was referred to a neurosurgeon for invasive options. From several nerve blocks, it was discovered that the pain involved at least three of the cranial nerves: trigeminal, vagus and glossopharyngeal. The pain was maddening, but I continued to work and focus on the fact that I had everything to live for and this would be over soon.
From that point until now, I have endured five cranial surgeries that decompressed intruding arteries and eventually severed some of the nerves in hope that it would lessen the pain. I had tried alternative relief with chiropractic and acupuncture along with others and no luck. In the middle of all this, my “dream job” came open to be a part of a notable new start up business in NYC. My body did not feel I was up to it but my spirit was willing. My family and I believe in God and have prayed throughout that I would would be healed. In faith, I accepted the new job leaving my comfotable one in hope that I would get better in the process. It was my opportunity to make millions and retire early to spend more time with my family. I just needed 5 years….
I succeeded in commuting weekly to New York but only with painful weekly nerve blocks from a top hospital in New York, but they consisted of between 10-12 injections through my hard pallette, side of my face and gums. These left me with no feeling in the entire right side of my face for 12-24 hours. I even had to “manually” blink my eye! It only provided 3-5 days worth of relief but I was still working and pulling it off. I saw some of the very best doctors at NYU, the Mayo Clinic, at John Hopkins, all not much help. Then I passed out on one of the flights (and the entire flight had to turn back) and again at work and yet again on a subway where I ended up way down the line. It came down to the point I knew I wasn’t going to make it. So, I quite my dream job to try to take care of this again and to spend time with my family. My former employer hired me back, which was great.
Yet, the pain was winning. One day, while at work, I went into a seizure and was taken to the hospital (I cannot count how many ER trips I had been on). This time, however, the pain was levels above. what I could physically handle. I started another pain management course and was given methadone in addition to all other meds. This helped but made me sedated and additional anti-depressants took away the last shred of ambition I had. Essentially from there, I worked from home but was essentially bedridden for two years.
While researching options, I discovered that implantable “neurostimulators” were being used in leading edge cases where other mediation and surgeries failed. It is something like a “pacemaker for the brain”. I talked it over with my neurosurgeon and obtained 4 other opinions from related fields. This was my last hope. My last straw. I was confident. It just had to work.
The surgery was in two parts, first the electrodes in my head, then later to embed the neurotransmitter unit if all was well. The first surgery was rocky and I had a severe 4 hour seizure, but but it was due to problems with medication doseage, not the motor cortex stimulator device, so my wife & I decided to go ahead.
Recovery was slow, but my pain went from 7-8 levels out of 10 to 4-5 levels, which was amazing. I regained my optimism and rediscovered interest in things again–watching movies with my family, eating together, writing, etc. I was motivated to get back to work in 90 days. Physical therapy went well, until one day recently it involved enough exercises to really get my heart pumping. And that did it……the pain reset to higher levels again. They think it is due to arterial influence on some of the cranial nerves. So basically, I need to exercise, but when I do it just sends me through the roof. I am still at about 6-7 level with the nausea returning.
My wife is in a separate bedroom as it usually takes me several hours to try to sleep–sometimes I can’t at all. But lately, I just weep and weep. I don’t blame God. I feel I am not doing something, but I am just spent. I have held up for eight, now going on nine, years and literally I have nothing else left to give. I want my daughters to have a father, but a bedridden one is not a father, it is just nothing. They spend most of their time with friends families because I cannot do things with them.
I live in a universe of pain, which I cannot escape. I want my life back, but I feel like I have been cheated. I never expected that severe facial pain could turn my world upside down! Over the last 2-3 years, I have thought about suicide frequently. Lately I even wished that my last surgery would have gone wrong and I just didn’t wake up at all.
I do not want my wife to have any guilt so I need to figure out how to do this where it is clean, preferably an accidental overdose or something. This is not life I am living now. It is torture. In the 1600’s I would have been dead a long time ago from this; in the 1800’s, probably the same or I would have become an opium junkie from treatment. All I can say is that for so many that suffer, I was naive to believe that medical science had the answer or that pain was all in your head. In fact, medical science is so in the dark about how the brain experiences pain and “re-wires” itself when it experiences dental or surgical trama or severe infection, all they can offer is drugs, see a psychologist, get acupuncture or perform all sorts of surgeries. This new surgery, involving a motor cortex implant, basically just sends signals that short circuit the brain in an attempt to lessen the pain.
My only two options left from here are: very high doses of meds, a surgery to break my upper jaw completely and expose the nerves for a “look-see” to ablate further nerves or a surgery that basically damages part of my frontal brain that makes me “not care at all” about the pain altogether (i.e. I still experience it, but it removes the brain from caring at all).
I just don’t see an end to it any longer. I need out of this game of life. Maybe there are “do overs” if some religions are right.