About Monica
My name is Monica Wong. I am a mother to two amazing kids and wife to an unbelievably wonderful and supportive husband! I am a confirmed craft-aholic! I don’t believe I’ve met a craft I didn’t want to try at least once! I’m not allowed into a craft store without a chaperone! I am also a classically trained mezzo soprano (although I can no longer sing because of my disorder). I suffer from two extremely rare and debilitating nerve conditions called Trigeminal Neuralgia and Anesthesia Dolorosa.
You can read about them here: Trigeminal Neuralgia and here: Anesthesia Dolorosa.
How it all started
I remember the day I got my first electrical jolt in my face. I was walking into my kitchen when I suddenly got an intense ZAP! I brushed it aside and figured it was just a weird one off but a few days later it happened again. It finally got to the point where I was getting hundreds of shocks a day and they were eye watering, drop you to your knees, intense. The best I can describe it would be getting shocked with a taser over and over again.
I would also get a very sharp pain in my ear that felt like a screwdriver was being jammed up to its hilt! I went to my doctor who kept insisting it was a sinus infection. I kept telling him it didn’t feel like a sinus infection. He prescribed several different antibiotics, but they didn’t help. That is when I did the thing you are never supposed to do, I looked my symptoms up online. When I found trigeminal neuralgia, my jaw hit the floor. It sounded EXACTLY like what I’ve been dealing with! When I confronted my doctor with it, he said it couldn’t be that because “when you hear hoof beats you think horses and not zebras”. Well, I guess I’m a zebra then!
I found a pain management doctor who has been amazing! He never gives up on me even when I want to! I have had countless nerve blocks and medication trials. Nothing worked. That was when I decided, in 2016, to have a procedure called Gamma Knife surgery. They screwed a cage onto my head (holy smokes did that hurt!) and then aimed gamma radiation at my trigeminal nerve in hopes of slowing the impulse signals. Of course, I had to make a joke about turning into the Incredible Hulk but oddly enough – the doctor didn’t get the joke! I was so disappointed! The procedure was a disappointment too, I didn’t get any relief from it whatsoever!
Microvascular Decompression
In 2017 I underwent a brain surgery called Microvascular Decompression or MVD. Supposedly this was supposed to be the crowning achievement in Trigeminal Neuralgia surgery. It was supposed to fix me. I was so excited to get my life back after nearly a decade of agony! The basic idea of the surgery is that they cut out a piece of your skull and then they insert a Teflon sponge between the trigeminal nerve and a blood vessel that is rubbing on the nerve. The doctor also “lightly cauterized” the nerve in hopes of reducing the capacity of the nerve to carry the pain signal to the brain.
Post-surgery
When I woke up from surgery, I realized something was not right. I chalked it up to being fresh from surgery, but it soon became apparent that this was a permanent complication called Anesthesia Dolorosa. If you thought Trigeminal Neuralgia was rare, move over because Anesthesia Dolorosa is even more rare. It is basically Trigeminal Neuralgia but instead of intermittent pain, it is constant. I have been in nonstop excruciating pain for 5 years without a break. I can get the shocks like I did with TN but add to that a heavy, dead, and cold sensation on the entire right side of my face, a creepy crawling sensation that feels like a swarm of fire ants is moving around under my skin and biting everywhere. I also get an icy burning sensation which is intense. Have you ever gotten so cold that it hurt? That is the closest I can come to describing it. Hold an ice cube to your forearm until it stings – now magnify that by about 1000. My teeth and gums on that side burn and ache. I also have a hard time keeping my eye open. AD has caused a bunch of secondary issues, one of which is nervous system overload. I suddenly lose control of my mouth and my breathing for a split second. I know that doesn’t seem like big deal but it is terrifying.
Another aspect to Anesthesia Dolorosa is that my entire right side of my face is completely numb. You could stick pins in my face, and I wouldn’t know it. The theory is that my brain is stuck in a pain loop so the loss of sensation to that nerve is interpreted as pain. Since I am permanently numb and constantly numb, my brain always feels the numbness as pain, therefore that pain never stops.
Numbness brings its own set of troubles. You would never even think of this unless it happens to you. I know I never thought of it! I constantly bite my tongue and cheek because I can’t feel where my tongue and cheek are in relation to my teeth. I have bitten myself so often that the side of my tongue is permanently white and dead. I actually had such a bad wound in my cheek that there was a huge jutting out part because it developed a keloid and so I kept biting it and making it worse. Doctors wouldn’t touch it because of fear of complications. I finally got desperate enough that I cut it off myself. That was probably the only time I was thankful for numbness! I also have to be extra careful about getting a foreign body in my eye because I have no blink reflex and I wouldn’t feel it. I have phantom itchy spots but since I can’t feel myself scratching, I never reach the itch. It is actually quite tortuous! I had scratched my scalp so hard when I first developed AD that I ended up with a horrible wound!
There’s no cure
Here is something else you would never expect, If you wind up with Anesthesia Dolorosa, most doctors don’t want to see you. Sometimes I feel like sort of a medical pariah! There is no cure. Not only is there no cure, there are no treatments that work well and nothing that works for everyone. I began searching for a modicum of relief. I tried several nerve blocks after the MVD surgery, those did not help. The next step was to have a nerve stimulator implanted. I’ll include a few pictures from my peripheral nerve stimulator surgery. I had 2 implants. The first implant went into my chest and ran up my neck and then went directly into my face, under the cheek. It was horrible – the wires that were installed in my face were overstimulating the nerve and causing the pain to flare badly. Not only that, but the wire was too superficial and actually started to poke through my cheek! You can see in the pictures how swollen I was. If you look very closely, you can see the spot where the wire was pushing my skin up! I eventually had that device removed and a different doctor put a different device in my lower back.
The wires run from my lower back, up the center of my back, are knotted at the base of my neck to prevent slippage, then continue up behind my ear. This device helps a lot. The combination of the device and several medications allow me to live at about a pain level of 6 or 7 with frequent bouts of level 9 or 10. Living in constant pain is SO hard. Even when I look like I’m fine, I am not. I am pretty good at hiding until it reaches a level 8 or so. That is what brings me to my ornaments!
I love crafting
It is the best way for me to get lost in something and not have to focus on the pain. It is my only escape. A friend of mine made these beautiful ornaments and I wanted to try it too! She directed me to www.theornamentgirl.com and the rest is history! Making ornaments has saved my sanity! Some days I can’t even make ornaments because the pain is just so over the top but many days the ornaments are what brings me be back from falling down the rabbit hole of despair.
Having a rare disorder with very little research behind it means that insurance companies love to deny treatments because they are considered experimental. It is so frustrating and honestly, heart breaking. There are some procedures I would really love to try but they are just inaccessible. It is hard to afford all the medications and doctor appointments, it just leaves no room for paying for procedures. That is what has leads me to this website! Why not use my love of ornament making to try to make my life more livable? With any money earned from my ornaments I plan to try new and different procedures as well as pay for some of the constant influx of medical bills! I hope you enjoy my ornaments as much as I enjoy making them!
— Monica
