How misdiagnosed illness changed my entire world, led me to become a doctor and ignighted a passion for finding the root cause of symptoms in myself and others.
In 2001 I joined an all boys high school wrestling team in the deep south of north central Florida. Our training was rigorous, daily and I chose to practice year round in both Folkstyle and Freestyle Wrestling. During this time I learned the intensity of hard training, pain, endurance and pushing forward against the odds. I learned what it felt like to experience body pain from exercise to the extreme, pain from blows to my face, head and body which helped me understand later in life when a different type of muscle pain began.
I continued wrestling for 9 years, until I finished undergrad college, winning many matches against boys and then placing 2nd at the Women's State Championships twice and making All-American at Women's Nationals. In my early 20's I started to experience muscle tension in my upper back and saw first x-rays of what repitetive micro trauma can do to a developing spine. I never put much worry into this wear and tear and continued living my life normally. The pain did not change much over my 20's and I utilized thai massage and chiropractic for upkeep.
As a major in Fine Art photography and painting in undergrad after school I found myself working in between Miami and Los Angeles in the fashion, art, music industry and nightlife world.
My bottle hostess waitressing shift was something like 9pm to 6am. I would do this for about 2 weeks of the month and then fly to LA and work on a clothing brand start up where I was nonstop photographing, designing, organizing and shipping orders, not to mention going out every night to network and find people to promote the brand. I had been in that lifestyle for YEARS, going out and drinking every other night of the week with no obvious symptoms aside from the normal hang overs if I went too far. I was 28 years old, fit, vibrant and overflowing with life-force.
I decided to get breast implants in my late 20's because I really wanted a breast lift, but the plastic surgeon convinced me that was a silly idea for a young woman. I even almost lost all the money I saved for the procedure, (about $5000,) and a kind stranger found it and returned it to me. I still look back at how amazing that is.
After getting implants I started to experience post work out pain like never before. That was my first symptom. The pain was systemic full body and it kept me up at night. I stopped working out but the pain was still there. Then my brain started behaving differently, there was intense fog and memory changes. Alcohol no longer felt good and made me sick immediately. My doctors had no answers. I was told there was nothing wrong with me.
What seemed like overnight, all the things I was doing became impossible. I had to slowly unravel my life completely to accommodate my new symptoms because everything was unsustainable. I could not stay up all night, I could not travel bi monthly, I could not "party," I could not burn the candle at both ends. I even struggled within my social scene as my "looks" started to decline. I had some money saved, I had a supportive boyfriend who let me move in with him when I couldn't afford my rent. As life became slow and quiet, I began to re-evaluate what was important and start thinking about a new path. My true desire was to understand why I was having these issues, and I thought I was dealing with a musclo-skeletal problem. That's why I decided to go to chiropractic school, thinking there I would discover the reason I was in pain.
Shortly after starting school I got exposed to so many types of practitioners. Sadly, even with regular adjustments from the best clinicians I did not get better. Accupunture helped a lot weekly, but I didn't see long term improvements. I didn't get a lot of answers as to why I was sick either. I figured out a lot of names for the underlying issues I was dealing with. Osteoarthritis, pre-diabetes, stomach ulcer, high blood pressure, le-hermittes sign, hyper-reflexia, tremor, to name a few. But no one knew exactly WHY. I didn't fit the demographic for a lot of it. I started studying functional medicine in my spare time, to get more answers. I used all my loan money to travel to seminars to hear the best experts lecture. I did hyperbaric oxygen every week to keep my brain clear enough for exams. I just kept going. No one ever asked me about having breast implants, and no one ever asked about silver amalgams either.
During my time in chiropractic school I experienced a steady increase in symptoms and changes in my appearance. I could no longer highlight my hair, I had to microblade my eyebrows because they became so thin. My skin was lackluster and sagging, I was always tired, some days it took all my energy to hold my eyes open. I often had to choose between cooking dinner for myself or showering. I remember after part one of national boards we had a big class party. After a few drinks, I found myself unable to get out of bed for nearly 48 hours. I found myself often sad, emotional, but I leaned into my studies of disease and pathophysiology. I diagnosed myself secretly with every disease we studied. Using this emotional part of my brain, it was hard to forget anything!
I found myself at a seminar in Colorado in the early fall of my 3rd year about Immunology taught By Dr. Brandon Lundell. I love immunology, it was my favorite subject and I had already diligently tested myself for many diseases like Lupus, RA, Hoshimotos, all autoimmune diseases which could be associated with breast implants or silicone in general. They were all negative. Then Dr. Lundell put up a study that said, "Women with Silent Ruptures in Silicone often associated with Fibromyalgia." I went home and immediately obtained an MRI of my breasts and was told by the report my left implant had an intracapsular rupture. I then began to do something that I had never done before, research breast implants.
I found a website and Facebook group called "Healing Breast Implant Illness by Nicole" that had about 10000 members at the time. Now as I write this, the group has 100,000 members! There was listed the ingredients in silicone breast implants. I couldn't believe how many heavy metals and chemicals they contained. I knew from my own genetic research that I have a mitochondria gene mutation on SOD2 which makes my cells bad at detoxing free-radicals that is especially sensitive to heavy metals. This was a light bulb moment and i started to research Explant surgeons from the recommended list and I planned to have surgery during winter break which was a few months away. I chose a surgeon in Florida near my mom and got all my paper work in. I then began working double clinic hours to finish early, to have plenty of time to heal.
In the Fall of 2017, a lot of stressful events started to compound. I took 3 parts of national boards each 1 month a part including part 4 which is a 2 day test. I worked extra clinic hours to finish early and also found out my boyfriend had 2 other girlfriends I was unaware of, and we broke things off at that time. It was my birthday weekend in October, and a mild throbbing pain started in my right lower molar. I went to my dentist who had done a root canal on that tooth in 2009. The dentist told me that the pain wasn't coming from my tooth but I should see a TMJ expert. A few days later the pain graduated to an extreme stabbing shock and I went to my general doctor. My general doctor said I had an anxiety disorder and referred me to a neurologist, a month long referral I should add. 2 days later I was in the ER and diagnosed with Trigeminal Neuralgia.
After getting diagnosed with this horrific disease nicknamed "the suicide disease" because it is so painful, I entered a dark month of extreme pain and isolation. Face gripping, no sleep, rocking myself in place pain, unlike ANYTHING I've ever experienced. At this time, my face did not show obvious swelling but I was put on multiple medications for the pain including Gabapentin and Tramadol. They didn't help. I found mild relief from heat compress and that's why I thought it was swelling more and more. I had no fever or signs of infection. When I finally saw the neurologist he first said, "your other doctors have ruled out a dental cause?" Yes I told him that was my first step. He checked my reflexes and they jumped off the table. "How long have they been this way? he asked. I told him for years. He said, "My dear, you are too young to have Trigeminal Neuralgia, what I believe you have is MS, and this flare is causing pain to the Trigeminal Nerve."
At this time it was WEEKS away from my scheduled explant surgery. The plastic surgeon has refused to operate until I discovered the cause of my face pain. The neurologist refused to clear me for anesthesia without a brain MRI. "If you have surgery during an MS flare, you could die," he told me. I said but what if the implants are causing me to have MS? He told me it was possible but I would need to wait a few more months. "You've had them in this long," He reminded me. I didn't want to be injected with Gadolinium contrast but he said it was the only way to see MS lesions. MS was a diagnosis I always considered, but the testing was invasive and expensive. I decided to go forward with the MRI.
The MRI came back negative for MS or anything else.
At this point, all I wanted to do was get to Florida to have explant surgery. I had seen 4 doctors and was still in extreme pain and now with a very swollen face. "Is this normal?" I asked people in the "End Trigeminal Neuralgia Support Group." No, was the most common answer. The doctor I was interning with suggested I get a nerve block of the trigeminal branch to get me out of pain long enough to fly to Florida. I visited his friend a Pain MD who said, "I think you have Shingles in your trigemnial nerve, Ive seen it before." He agreed to nerve block me and I reported for the procedure. During my pre exam the nurse said, "You have a fever." For the first time in 30 days I presented with a fever and was subsequently sent home with antibiotics. Later that night the original root canalled tooth started to ooze puss from the gum line. The following day the original dentist said he could NOW see tooth infection on X-ray. "This tooth is coming out right now!" He was so concerned about this mistake he texted me for weeks checking up. The pain went away after the extraction.
When I reported to the Miami plastic surgeon's office for pre-op I had lost about 12 pounds and he told me en bloc would be nearly impossible. "But my implant is ruptured," I said. He assured me he had a technique to "power wash" the breast pocket if any silicone spilled which to me sounded ridiculous. He told me I had no breast tissue and explanting my over the muscle implants could "perforate the skin accidentally" among other potential risks. I felt completely uncomfortable with this doctor and it broke my heart to cancel the surgery after fighting so hard to get there. I decided to call Dr. Jae Chun in Newport who I knew was the expert on explant even though he was a lot more expensive and all the way back in California. As luck would have it, Chun had a cancelation and I flew back to LA and explanted Jan. 4th 2018.
Dr. Jae Chun did a perfect en bloc explant surgery on me in 50 minutes. After the surgery he came and told me, "Your implant is not ruptured, the MRI was wrong." This matters because an implant does not need to be ruptured to cause symptoms. After my implants sat in a sterile bag for a few days they became sticky to the touch. Implant Gel Bleed is just as bad if not worse than a rupture, and all implants sweat differently in the body due to the immune system and other factors. I started the road to healing that day, but my healing journey was not even close to being over. I have to stop now and thank Dr. Chun for playing this pivotal role in saving my life, and thank my friends and professors who were there for me during 2017, the hardest year of my life thus far.