This is a long post. I tried to anticipate every question you may have and answer them all at once.
On the surface, it appears this all began in the fall of 2010. Good or bad there will be more to come. If you'd like to know how things are progressing you can check back or use the email subscription link near the top of the right sidebar to subscribe and have all future posts land in your inbox. I won't be updating my FB pages, Instagram, Twitter or my websites regularly about my health. I will keep all updates consolidated to this blog.
If you don't have time to read the post but want to understand what's going on here is a video synopsis:
Dental Procedure Trigeminal Nerve Damage
So my ridiculously prolonged and pain-filled saga began years ago... Not weeks, or days, or minutes, but immediately as the novocaine wore off following a dental procedure. I have been living with chronic pain in my face ever since that day in 2010. I even blogged it in the hopes that someone would know what was going on. Eventually my dentist said a nerve may have been damaged by the novocaine injection, but they never said I should see a neurologist, or any other doctor. Instead they focused on the periodontal ligament that runs along the gum under your teeth and said it might have become sensitive to pressure and if that was the case there was nothing that could be done. When the excruciating pain hadn't subsided weeks later I went to my Primary Care Physician. He dismissed the tandem pain as not possible and, like the dentist, told me there is no nerve that runs directly between the gum and nostril that connects the two areas. So I learned to live with it.
It wasn't until I moved to Michigan four years later that I learned about ganglia nerves from my new dentist and an ENT. As it turns out the ganglia nerves do, in fact, connect the two areas and everything in the middle of the face through the maxillary nerve. It is not a direct line between the two but there are branches of nerves that all connect to the same point of origin. But, just like in California, neither doctor offered any help or a referral to a specialist who could help me. The dentist in particular also concurred if the periodontal ligament was the problem there was nothing that could be done. So I continued to live with the pain.
Looking for Answers
After going to the dentist for a routine cleaning at the end of last year, I set the wheels in motion by seeing an ENT on Feb 8th of this year. Two weeks later I discovered I had a small, pressure sensitive mass on my upper gum exactly in between the two areas of pain that have plagued me for so long. When I would lightly run my finger directly over the mass it felt like pins and needles, electric shocks, like when your foot falls asleep. Not excruciating but not a sensation that should be there. It was pressure sensitive and I could also feel it when I pressed the outside of my face.
My dentist was certain I needed a root canal. He thought the mass was the result of a tooth nerve dying and the necrotic (dead) tissue was "gassing out" into the gum line causing an abscess. I didn't think I needed a root canal but went to the endodontist he referred me to just to have the tooth tested to rule it out. The results of the nerve test? Inconclusive. Atypical. My tooth didn't react clearly enough for the endodontist to be able to tell if one was needed or not. So typical of my body to be atypical.
The First Piece of the Puzzle
The endodontist listened as I told him about the simultaneous pain that would occur several times a month and lasts for several days each time for the past 7.5 years. The pain is always the same and triggered by chewing. It begins with a tooth that has had a root canal aching (as if it hasn't) and stabbing pain (like knives) in my upper right gum line directly above the same molar. At the same time an awful searing and burning sensation occurs in my nose as if someone has poured acid into my right nostril. I also told him a couple of times a year the pain will last a week or more. When that happens it will migrate to encompass my entire upper right gum line. It feels as if all of the skin has been peeled off of my gum, acid is poured over the raw skin, and the end result? Hundreds of excruciatingly painful, constant, sharp, searing, electric shock-like pains will race across the entire gum unrelentingly for a week or more along with the stabbing gum pain and searing pain in my right nostril. The gum looks completely normal but the pain will become so severe I can't brush my teeth on that side for several days by the end of the week.
No over the counter pain relievers have ever helped.
Trigeminal Neuralgia (or Neuropathy)
The endodontist was the first doctor in 7.5 years to take me seriously. He listened, asked questions, then asked if I knew about Trigeminal Neuralgia? I didn't. It is a rare and awful condition. Like you wouldn't wish it on your worst enemy kind of horrible. If you Google it (as I did), you will see that it is also known as “the suicide disease" (because people take their own lives when they can't take the pain anymore), "sciatica of the face," and "the most painful disease known to mankind.”
He said everything I told him were classic symptoms of nerve damage and proceeded to make the suggestion not one of the other 9+ dentists, doctors, and specialists (I had told about the pain) had ever been willing to make: "You should see a neurologist," he said. Just like that. I had no idea I needed to see one. I had trusted that the medical professionals I had seen would have told me if I needed a specialist. But they hadn't. Instead they had all either been baffled, defensive, told me there was nothing that could be done if it was nerve or ligament damage, and worst of all were utterly dismissive of both my pain and concerns.
The possibility trigeminal neuralgia was the source of my pain was a huge shock and something that took some time to adjust to. The worst part about nerve damage? It can worsen over time. So while I'd learned to live with the pain, realizing it could (and most likely would) get worse sent me into a bit of a tailspin since mid-March.
After learning more about trigeminal nerve damage I then realized that I had been experiencing another symptom for years. When I wear my reading glasses, which is a lot, the very light pressure of the glasses resting on the bridge of my nose also triggers a strange facial ache beneath my right eye. If I hold the glasses off the bridge of my nose with one hand it lessens. If I don't the ache localizes and intensifies beneath my eye until I have to stop what I'm doing and go lie down. Once I realized that it could be related to the same ganglia nerve bundle that was most likely causing my other pain I began wearing my glasses a little lopsided, so that all of the weight on the bridge of my nose is on the left side of my face. As soon as I did this I realized I was having fewer mouth/sinus pain attacks. Finally, just a small amount of welcomed relief.
A Mass in My Mouth
Over the course of 3 months the mass at the top of my upper gum had grown larger until it reached almost from the top of the gum all the way down to the top of the tooth beneath it. The three doctors all recommended cutting it out, without testing it first to see what it was. They all said if it looked suspicious it would be sent to pathology. I refused to allow them to remove it because it is literally located exactly in between my two areas of chronic pain.
By April I had asked all three (dentist, endodontist, and ENT) to please do a needle aspiration first. If it was an abscess, I could have it treated but I was terrified it was not what they thought it was and could be entangled in a nerve, and cutting the nerve could damage it more and cause my chronic pain to become even worse. None would do a needle aspiration. I was so frustrated. I had told each of them "IF I WAS A DOG WITH A LUMP SOMEONE WOULD HAVE STUCK A NEEDLE IN IT BY NOW, ASPIRATED A SAMPLE, AND SENT IT TO PATHOLOGY!" They all told me that's not how things are done on people. GAH!
The Neurology Consult
The ENT I had seen earlier this year had done a CT Scan that showed no visible cause for my pain. He had told me he didn't know what was wrong but would help me however he could. So he sent in the request for the neurology referral. It took 3.5 weeks to get in for a consultation. After passing the in-office neurologic exam I was sent for an MRI. The standard next step when X-rays and a CT Scan show nothing is wrong but the pain persists.
Friends warned me they're no fun and can make you feel claustrophobic. I laughed and told them I had had one before and would just pretend I was sleeping in The Glampette (my tiny travel trailer). LOL. It turned out the most traumatic part of the procedure was putting my navel piercing stud back into my navel afterwards. You cannot wear any metal during an MRI as the machine will pull it straight from and/or through your body. To put it back in place? It took close to a half hour. I was ready to give up and go find a piercing studio and pay someone to do it when it finally slipped in. Then I had to screw the tiny ball onto the end of the bar. OMG, I was far more traumatized by that than being in the MRI tube for an hour. LOL
The MRI Results
The MRI was on April 18th. The radiology technicians told me the results would be ready “in a few days.” When the Neurologist called the next morning I thought to myself "Uh oh." The test had been to determine if there was any visible damage or compression to part of the trigeminal nerve on the right side of my face. What I expected? That there would be no visible damage to the nerve because that’s how trigeminal neuralgia that isn't caused by Multiple Sclerosis often works. The damage can be invisible so it’s a clinical diagnosis which means if after having X-rays, a CT scan, and an MRI no cause for the pain is found, and the symptoms match the typical disease symptoms, you can be diagnosed based on the process of eliminating the most obvious cause(s).
“There is no visible damage to your trigeminal nerve,” he said. But, there was an “incidental” finding. The word is so innocuous. Incidental used to mean (to me) "Oh, by the way..." He went on to explain in diagnostic-speak “Incidental means we found something we weren’t looking for.” Turns out that "something" can be insignificant or the worst thing you can possibly imagine.
That was when he told me the radiology report said I have three lesions in the deep part of my brain. And because of their location they are inoperable. Um, what? I asked what exactly is a lesion? In short, it's a type of tumor and just like a tumor lesions can be benign or malignant. Great. I have three brain lesions. Maybe not? At one point in the conversation the neurologist referred to them as gliomas... "Can you repeat that and spell it for me please?" I asked him. Gliomas are an overgrowth of brain cells/tissue and, I learned later, are often the kind of cells that cause the worst possible brain cancers.
Through my shock I asked the neruologist: “How concerned should I be at this point?” He told me it was too soon to say. Then he said: “I’d like to refer you to a Neuro-Oncologist.” I said: “Well that sounds like I should be VERY concerned!" He said he just wanted to be cautious.
He said they were "low grade" which I knew meant they were small because they had been found early by accident, and that was good news. But I also knew they shouldn’t be there. If they are malignant that is really bad but even if they are benign and grow or multiply that is really bad too.
He said what they found was “rare.” I literally laughed and told him “Of course it is!” During our consult I had stressed to him that everything about my medical history was “atypical.” I had heard so many doctors tell me over the years (usually while shaking their heads in puzzlement or disbelief) “Hmm, I’ve never seen this before,” or “This isn’t typical,” or “This isn’t what we usually see in someone with this condition,” or "Wow, that sounds awful."
- There was the time my broken feet were misdiagnosed.
- The time I survived natural gas poisoning because a spider happened to bite me while I was breathing in gas from a broken furnace.
- Then there was the time I twisted my ankle that led to crutches and an ankle brace (that I affectionally nicknamed Frankenfoot) for almost two months before a doctor figured out the problem was hidden fluid trapped in my ankle.
- One time a nurse practitioner at a dermatology office misdiagnosed a bacterial infection as a viral infection. That was one of the most painful episodes of my life. The infection raged for well over a week before it was properly diagnosed.
- And when I got cat scratch fever but hadn’t been scratched by a cat?
The neurologist said I could definitely add this to my list of atypical things that normally don't happen to people.
Because my facial pain symptoms are atypical to Trigeminal Neuralgia the neurologist wasn't able to give me a diagnosis. He offered to work with me if I wanted to pursue treating the pain of the trigeminal nerve damage but I declined. I had read enough about the two classes of drugs used (off-label) to treat trigeminal neuralgia. Because it's a rare condition very little research has been done on it so the medications used to treat it are anti-convulsants (for epilepsy) that usually make people feel so sick they stop taking them or antidepressants that also make people feel worse than they did before. Even if they don't make people sick, they seem to only work to partially to lessen pain and only for a short period of time (months) before they become ineffective and then you have to start all over again testing different versions of these drugs. My body reacts poorly to medications and I have already learned to live with the pain. I thanked him, declined, and asked if it gets worse to the point it is intolerable can I call you back and pursue finding a medication then?
The Neuro-Oncology Consult
It's worth noting that the neuro-oncologist told me I have two lesions, not three, even though the neurologist had described them as three. The one on the left is in two distinct areas of my brain with each area connected by a strand of tissue. She also decided non-specific spots was a better description for now since we don't know for certain they are lesions, gliomas, or scars. Scars? During my meeting with her the neuro-oncologist said the spots could be scar tissue that can form from head trauma or migraines of which I've suffered from both. Repeatedly.
Head trauma incidences:
- Was in a rear end car accident waiting for a pedestrian to clear a crosswalk so I could make a righthand turn on a green light when a car approached from behind and ran straight into the back of my stopped car. The impact was so great it killed my engine and I felt as if I'd been cracked over the back of my skull with a baseball bat. (Whiplash 1994)
- Less than three months later I was rear ended again in traffic that had stopped. As I stopped I looked in my rearview mirror to see the driver of the monster pickup truck behind me looking out of his passenger window, oblivious that all four lanes of traffic had come to a halt. He noticed with seconds to spare, slammed on his brakes, and plowed into the rear of my car, totaling it. (Whiplash 1994)
- Approximately 7 months later I was in a tour vehicle in Colorado that slid on black ice and plunged straight off a 30' cliff. You can read all about it here. (1995)
- Around a year later I was thrown from a horse. It bucked and reared eventually pitching me over its head. My friend said I landed flat as a pancake on my back and back of my head on the dirt road and literally bounced. I was knocked out for just a few seconds. (1996)
- Years later I almost knocked myself out getting into my car one evening when I misjudged, well, everything and whacked the right side of my head so hard against the top of the door frame that I literally saw white stars and gave myself a concussion.
My wonderful neighbor went with me to the consult to be my extra set of ears. And she drove. When we got there I found a penny in the parking lot. I kept it and have not yet decided if it is lucky or not. There was the good news (the lesions may be scars) and bad news (she graded them as Grade 2 instead of the Grade 1 the radiologist had given them).
There isn't a huge rush to do a needle biopsy to see what the spots are comprised of. The problem is to do a biopsy a needle will have to be inserted all the way through to the center of my brain. In more than one location. Ugh. It's the only way to take the necessary tissue samples which I’m certain can cause a certain amount of damage and comes with all of the usual risks associated with any surgical procedure that requires general anesthesia, drilling through bone, and breaks the skin opening one to the risk of infections.
My first followup MRI will be in August. It will be performed with perfusion to see if there is any vascular activity in the spots and spectroscopy to see what the chemical composition of the spots are. If there is vascular activity that will mean they are lesions or I read, even worse they could be gliomas as gliomas often create their own vascular systems. If there isn't any activity they may be scar tissue.
A Second Opinion
Because there was no facial pain diagnosis following the MRI I am also pursuing a second opinion regarding my facial pain, the mass inside my mouth, and am wondering if all of my issues are related? Wish me luck! I had to go to my new (my old one was transferred to a different clinic) primary care physician to request the second opinion referral.
I went expecting to have to plead my case and wasn't sure I would be given one. She was not only empathetic, she had even take the time to research options for me noting that University of Michigan's Medical Center has several neurologists who specialize in trigeminal neuralgia. It was such an incredible relief to finally be believed. I didn't have to convince her of anything.
I'd like to go to Mayo Clinic because of their thoroughness and the collaborative way their specialists work. If Mayo Clinic is willing to take my case, then I have to go to my health insurance company to ask for authorization for out of state treatment the process can take up to 6 weeks. Most plans only cover ER/trauma care if you are injured or become sick while traveling. If I am not able to obtain authorization my PCP offered to write a new referral to University of Michigan's medical center. They their specialized neurologists (and a brain tumor program) I am sure they can also help me.
Carrying On
My first instinct was to stop my life. Just shut everything down and crawl into bed and never come out again. It took a couple of days to realize that would be the worst thing I could do. Instead I forced myself to go to the April West Michigan Origami Folding Club meetup a few days later and have done my best to carry on since then. I have stopped adding products back into my Etsy shop as they sell out or the listings expire. I have a list of custom requests I plan to focus on as well as continue to take small orders through Etsy. I decided just the other day to cancel the popup markets I was going to participate in this year and focus on my health and learning how to not be anxious or stressed. I'm also seeing my therapist again. He's great and I always feel more centered after a visit with him.
Some days are harder than others. Heck, some moments are harder than others. There's been a lot of up and down emotions and surprisingly (to me) a lot of frustration and anger at all of the doctors and dentists who never took my pain seriously enough to try to help me figure out what was wrong. To be clear, I am not upset that they didn't know what was wrong. Trigeminal neuralgia and neuropathy are rare. The spots in my head? Even more rare. What I'm upset about is that none of them ever offered to refer me to someone who might have been able to help me. I always assumed that doctors cared and were there to help people. But now I realize that some are only capable of caring as far as the reach of their own knowledge base or egos allow them to. It's been a prolonged and painful lesson to learn the hard way.
Sometimes I don't feel like myself, not because of the spots... Though it does cross my mind... But from the stress. Like the day I rolled down my window and yelled at a guy who swooped in and stole a gas pump from me even though I entered the parking lot first. When I told my friend Judy she thought that was a good thing and that I should express my anger because it can be therapeutic. I told her I think there may be a fine line between therapeutic and lunatic. LOL
Other times it's stressful because if I stumble on a word, drop something, trip, can't remember something, etc I wonder is this a symptom that the spots are getting bigger and are impacting my senses, motor skills, or memory? Or am I just clumsy and distracted? The wondering is like a cloud that hangs over me. I tell myself not to worry until I know I really have something to worry about. I remind myself every day that these could be scars or benign lesions that will never become worse than they are at this moment but it's really hard to not wonder about the what ifs and go to dark places.
For now I am focusing on four things the rest of this year:
- My health = Reduce stress
- Officially launch my Patreon page
- An exhibit of 12 of my miniature origami mobiles all on display in one place at the same time. This will happen next month in Downtown Grand Rapids as part of the Grand Rapids Asian Festival. They will be displayed on the second floor at the DeVos Place Convention Center during the month of June.
- Completing my fifth ArtPrize entry so I can be at the Grand Central Market and Deli this fall.
Macrobiotics
If you know me at all it won't surprise you that I'm not going to just sit around and hope for the best. I wanted to do everything in my power to create a good outcome so I started practicing macrobiotics on April 25th.
Years ago I dabbled in them out of curiosity and personally met someone when they had been given a terminal cancer diagnosis with only weeks to live back in 1995. I took them a pile of my books and answered what few questions I could. They hired a professional counselor who created a specific diet and lifestyle plan for them and guess what? They are still alive today, over 20 years later.
So a week after the MRI results I found and hired a counselor too, Denny Waxman of the Strengthening Health Institute. He told me that even if I change my diet and lifestyle on a dime it may take several months before my body may begin to reverse its damage. So imagine my shock when just five days later that mass in my mouth? It had shrunk to less than half of its size and the electric shock sensations were completely gone! In the past two weeks it has continued to reduce in size though at a much slower rate. That it is reducing has made me very hopeful that my body is responding well to the changes.
I am actually enjoying the macrobiotic diet and am finding it easier than the lifestyle changes of chewing every mouthful of food 50 times until it liquifies and remaining upright for three hours after dinner. Many of the diet ingredients are traditional Japanese foods so they were already familiar to me. Right now much of it is a little on the bland side because I have reduced my salt intake. I can use a little salt or shoyu (soy sauce) while cooking but not a lot and not at the table. I've found if I plate the food beautifully? Even the bland food tastes better :)
I'm eating lots of whole grains like brown rice, millet, barley, and bulgur. And lots of different kinds of vegetables, beans, sea vegetables, pickled vegetables, a little fruit, and small amounts of wild caught, white meat fish. The main principle behind the diet portion of macrobiotics is balance. Foods cannot be too acidic or alkaline. So it's not a veggie free-for-all and almost all foods are either steamed, sauteed, boiled, or pickled/fermented. I've purchased two small donabe clay pots for cooking and love them! I wish I'd begun using them years ago! I also got a clay pot for making my rice and grains in. They are so much better than when made in a rice cooker or regular kitchen pot.
I have also noticed that the intensity of my facial pain has been dramatically reduced in the trigeminal nerve attacks I've suffered since beginning the new diet and lifestyle changes. That is amazing! For the first time in years the pain is subsiding! What was stabbing pain now feels like a pulse in my gum and the excruciating sinus pain now feels more like discomfort instead of searing pain.
The one area of concern I have about macrobiotics is that it is a nutrient-rich but low caloric way to eat. Having accidentally malnourished myself years ago when practicing vegetarianism I am being very careful to make sure I am getting all of the calories, vitamins, and minerals I need through my food. I read that when practicing the diet and lifestyle fully one can expect to return to their "natural weight" which is what you weighed at 21 years of age. Um. I think I was around 80'ish pounds back then. Most of my adult life I weighed 91 lbs. Which was on the underweight side of the BMI index but no matter how much I ate that's where the scale stuck. My parents used to joke I had a tapeworm and I've been accused more than once of having a hollow leg. LOL. Three weeks ago I weighed 120 lbs. I have now lost 12 lbs. and am guessing I will still lose another 18.
To be clear: I have every faith macrobiotics can reverse the damage if the spots are lesions or gliomas. There are plenty of documented cases where this has happened with various terminal cancer diagnosis'. The harder part seems to be staying on the diet the rest of one's life after you are healthy again. I will not have that problem. Living macrobiotically is a lifetime decision for me.
How You Can Help Me Through This
So now I have a favor to ask... Please send good thoughts, prayers, positive energy, mojo, and virtual hugs. I am open to any positivity, hope, and love you would like to send my way. It will all be very appreciated.
But as far as messaging me, please leave all questions as comments here on the blog. I learned after the 60 Second Doc went viral that I cannot answer every message across the internet and all of the social media platforms. When the video came out in early February I was inundated with messages on Facebook through my personal account, the FB Tinygami page, the FB West Michigan Origami folding club page, on Instagram, through my website contact pages, even on Twitter... It was too much. I still have not replied to all of them. You are welcome to send me messages on any of the above platforms but I will tell you now I will not be able to reply to them. If you post questions here on the blog I will do my best to reply to them here in subsequent FAQ posts.
When people ask me "What can I do?" I only ask this: Whatever our friendship has been the past few years since I moved to Michigan, please, let's keep it exactly the same. If we normally private message on Facebook every day, let's keep doing that. If we PM every few months, let's keep doing that. If we comment on each other's walls but don't message, please continue to do that. If we've talked on the phone from time to time, let's keep doing that. If we had already discussed your coming out for a visit this year, you are still welcome to come. See where I'm going here? More than anything I just want normalcy. After all, if the spots are scar tissue, or the macrobiotics make them go away, then nothing has really changed except for my awareness they are there. I'm not sick now.
Everything will be as it is meant to be...
It was while talking to my friend Judy, back when I was under the impression I had lesions or gliomas and I didn't yet know about the scar tissue possibility, that I gained some clarity on how I felt about all of this. If the news is ultimately bad I will literally fight for my life but am also a realist and know that none of us live forever. As we spoke I told her it would be ok either way. I realized that I was not like the guy in Tim McGraw’s song “Live Like You Were Dying.” I didn’t need to go sky diving, Rocky Mountain climbing, or ride 2.7 seconds on a bull named Fu Man Chu. I told her there is nothing I want to do and nowhere for me to go. I have no bucket list. In that moment I realized I am already living in exactly the place I want to be living: Out in nature, in the beautiful countryside, here in Michigan. I’m doing what I had always hoped and dreamt of doing: Being a working, full-time artist. And I am with the person I most want to be with, someone who I didn't ever expect to find: Fred. If my days are numbered I want to spend whatever time I have left just being here, doing exactly what I'm doing, with him. I don't want or need anything more that that. I have already received far more than I had ever hoped for.
“Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and accept it-then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.”
― M. Scott Peck
The Road Less Traveled
The Road Less Traveled
These are some great links if you'd like to learn more about macrobiotics:
The Macrobiotic Diet: What You Should Know
Macrobiotic Diet: Balancing The Yin and Yang
Macrobiotics: A Principle, Not a Diet
Denny Waxman is the counselor I am working with. This is his explanation: A Macrobiotic Definition That Actually Explains Macrobiotics
