My Health Journey - Part 1

Holly Tristan

Finally! My first blog post, and a new website! SO PUMPED! It took some time, and some re-prioritization – but here I am, writing about the most asked question, and the most requested first blog post.

My health journey. I could start from birth, but I’m going to save you 500 pages, and start at my early 20s, which seems to be the most pivotal point in my journey. So here is my condensed/hitting the main points version – PART ONE…

Let’s start at 20 years old (for the record, I am now 37.5 years old to be exact!). I had just switched from school full-time, to school part-time and working full-time. I wasn’t quite sure what I wanted to do, so I was chipping away at general ed at a community college, living on my own, and dealing with two separate health issues at this point. One was that I had gained significant weight, and the other was that I started having notable pain in my neck and back. I’d always had tendinitis in my shoulders from being a swimmer and water polo player, but this was different pain.

To date, I had started and stopped dieting many times, did the “start on Monday” thing, counted calories, restricted and overate, restricted my fat intake (even ate olestra OMG!!), did the Atkins diet (got super sick), etccccc. And then there was my pain. I saw a ton of doctors and specialists. For a decade. And my symptoms worsened. Here’s a list of the symptoms I had for 10 years: debilitating pain in my neck and back, intense headaches and head rushes, widespread joint pain and swelling, brain fog, exhaustion even after decent sleep, numbness and tingling in my hands and feet, and areas of numbness in my back. The decade of my 20s was tough physically, but I was also experiencing a lot of growth personally and professionally. Here are some of the good things that happened in my 20s: I got my life together. Stopped partying. Found my self-worth. Became confident. I started eating healthier – each year of my 20s progressively got better with my “dieting” issues. I fine tuned what I ate, and began to seek out organic foods, and cooked most meals myself. I found yoga. Finished my bachelors program, and started my masters program. Met my now husband. Moved up the corporate ladder, and traveled the world for my job. I had a lot to be grateful for, but was back and forth to doctors and beyond frustrated that I didn’t have answers.

In 2009 I was in a car accident. Somebody t-boned me and totaled my car. My pain got even worse. It was honestly the unimaginable for me, because I was already in so much pain. But this pain led to answers. Post-accident I went to a chiropractor for 8 months, until he refused to continue treating me. He told me that I was declining in his care, and that I needed to have an MRI done. After he made that recommendation, I went back to my GP for the 100th time, and told her that my chiropractor suspected something more. She ordered the test, and I went to have it done. That same day, she called me and told me they needed to do an MRI with contrast because they suspected something called Chiari Malformation.

Further studies showed that I had Chiari Malformation and Syringomyelia (click for more info). FINALLY. ANSWERS. I also want to mention that at this point, nobody had ever mentioned an anti-inflammatory diet to help with my pain, and that I had also sought many alternative therapies – ie. I was very anti-pharmaceuticals and pain management medications; I didn’t want to depend on those, and did not want to deal with the side effects.

After I was diagnosed, we planned the surgery for 7 weeks out, mostly because I was in the first year of my MBA program, and I wanted to finish the semester. This also gave me some time to move apartments, and wrap up some work projects. In June of 2010, at 29 years old, I had brain surgery. My neurosurgeon went in and removed some of my skull and shaved down some of my spine, then created a patch that would hold my brain (the cerebellar tonsil herniation) up and out of my spine, in order for my cerebral spinal fluid to flow properly, which would also hopefully help my Syringomyelia (cysts in my spine) shrink. Crazy, right? Surgery was considered a success, but I had some setbacks in recovery. I had trouble managing my pain, got a suspected sinus infection that led to an antibiotic (on top of lots of other meds and anesthesia), that I reacted to, which led to hives. For A MONTH. Which led to steroids as well. As you can imagine, I was an almost 30 year old that just wanted to get back to my life! As soon as I “recovered” from my surgery and hives, I went back to work 8 weeks later. I was already off jet-setting back to Europe and Asia. I was also still doing physical therapy, and healing from my surgery.

For a short time, I seemed to be improving. Until I wasn’t. This led to almost 4 more years of dead ends. Nobody seemed to want to help. I had a second opinion who said my first surgery was a success (he was a colleague of my 1st surgeon – insert eye roll here). I did acupuncture twice a week, hot yoga, and massage therapy – anything to stay off of prescription drugs. In the meantime, I finished my MBA program, and got engaged and started planning a wedding. I switched companies I’d been working for (overall I spent 17 years in the biotech industry), and got married in 2013. I also applied for a clinical trial shortly before my wedding. And we prayed. Chiari malformation is rare, and most doctors I’d seen didn’t know anything about it. The doctors involved in this clinical trial are extremely educated and familiar with both Chiari and Syringomyelia.

I will never forget landing back at LAX from our honeymoon in early November of 2013, sitting in baggage claim, and reading the email that confirmed I was being considered for the clinical trial, and they were requesting I fly out to DC for an evaluation. My husband and I sat there and cried. And prayed we would get some answers and someone would finally help me. Two weeks after my wedding, my Mom and I flew out to DC. I went through numerous tests and spoke to several teams of physicians. Long story short, I still had a significant herniation of my brain in my spine. We planned for a more aggressive surgery in early January 2014.

This surgery was harder. Emotionally I was a wreck because I had already been down this path, and knew what to expect. And my poor body had been beaten up. At this point I humored my pain management doctor and started a very rigorous protocol of narcotics and multiple other drugs – some to combat side effects of other drugs. It was brutal. We arrived in DC a few days before my surgery and we played tourists. I cried randomly. Mostly at meals at the local Whole Foods in Georgetown (Love that location!). The days leading up to surgery were surreal. Brain surgery number 2 happened, and I was under anesthesia for about 6 hours. They removed more skull, and shaved more C1 and C2, and also used cadaver material to create a mesh for the bottom part of my brain. This surgery was also considered a success, but again, something unexpected happened. The intubation tube had moved during the procedure (I was face down), and I nearly bit my tongue off. After my surgery, I could barely eat, talk, swallow meds, and I was miserable. It was really hard. Even writing about it brings tears to my eyes – and hope in my heart of how far I’ve come and what I’ve been through. We stayed back east for almost 2 weeks, then home to recover and start physical therapy in February of 2014.

Recovery was slower this time, partly because I allowed myself to move slower and honor the healing process. My tongue healed, although I have significant scar tissue and speak ever so slightly different (only I notice). I also stopped all of my medications cold turkey (not recommended by any doctors) in April of 2014. I did that because I had decided that pain was better than pain and poison – the meds never truly helped with my pain, and I was sick and tired of all of the side effects. I continued with alternative modalities of pain management including: physical therapy, acupuncture and cupping, massage therapy, and hot yoga (the heat feels soooo good!).

Something else happened in 2014. I got PREGNANT in late May!

And I’m saving the rest for Part TWO, coming next week, where I will update you on these last few years, how I’m feeling today, and how I’m managing my health these days. Hope you’ll tune in! =-)

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