What a year a difference can make. One year ago, I flew home from New York after having surgery to fix a tethered spinal cord – a manifestation of my hyper-mobile Ehlers Danlos Syndrome (hEDS). I woke up after my surgery on the precipice of transformative emotional and physical healing – an experience several others have reported. After spending a week recovering in Manhattan under the care of my best friend, I found more courage to face my life in new and honest ways. It was as if the universe was preparing me for the intense changes ahead. I arrived home to my husband wanting a divorce.
Fast forward one year, and I have gone from moderate-to-severe ME/CFS (bedbound for about 18-20 hrs a day) to moderate ME/CFS; my physical function has improved from about 20% to 50%, not overnight, but gradually over this past year.
I went into surgery ready to shed conceptions about my illness. I knew I would have to strike a delicate balance between my physical rehabilitation needs while not exacerbating my exercise intolerance, a core feature of ME/CFS. I had to develop new ideas about pacing that included my need for movement. I embraced the concept of a beginner’s mind and accepted each day for what it brought, without judgment or fear.
Progress and healing have been far from linear. Some of the most challenging days were in the first three months after surgery. My nervous system worked overtime to integrate new information, leaving me overwhelmed and stressed with little provocation. Winter brought a serious autonomic crash and more emotional struggle. I still experience extreme stress intolerance, worsened by the heavy emotional toll of divorce. The good news is that I survived all of this and am somewhat thriving in my new life.
Finding my pilot light and my pilot
It is as if my surgeon, Dr. Bolognese, found and lit a pilot light while he was rummaging around inside my spinal cord. Before surgery, I felt like an abandoned marionette waiting for someone to pick up my strings. Since then, I have a new set point; rather than being on the post-exertional malaise (PEM) roller coaster and having fleeting improvements, I have a new stable equilibrium I return to when knocked around by ME/CFS. It took a little longer to return to this place during my winter crash, but I woke up one day in March feeling like someone had picked up my strings again.
I owe much of my success this past year to my beloved and talented physical therapist, Tony. His reassuring and optimistic approach provided a space to share my dreams and goals. He always makes me feel okay with where I am; even when I crash hard, he reminds me that doing activities of daily living is enough. He served as a witness to my healing, reminding me of where I came from and how far I have come, even when I couldn’t see my progress. I came to him a month before surgery as an emaciated woman, wearing a neck brace, unable to be upright. I now stand tall without a neckbrace and have more muscle on my frame.
I tried testing the limits of my improvements this past spring by lacing up my ice skates and hitting the rink. I used to love ice skating and the mind-clearing it brought. It was an unfortunate day to get back on the ice – the Zamboni was broken, and the ice was rough. It was all too much, and I crashed hideously. I have learned that any activity requiring my arms, including skating, causes PEM. This is true of my PT exercises as well. I handle leg work much better.
I would love to share more about my post-surgical PT approach, but so much of this work is individual. What might work for me may cause others harm. Likewise, I have had to filter through a lot of information to find what works for me.
One of the most challenging aspects of physical rehabilitation while having ME/CFS is that we don’t fit the usual model because we cannot train our aerobic system with exercise. With ME/CFS, physical rehabilitation is not a process of incrementally increasing exercise (e.g., graded exercise). How many times have I set out with a new plan for a routine, only to crash after trying something, scuttling any progress? Having ME/CFS is a process of constantly picking up broken pieces. Rather than discarding them, I started making a mosaic. Tony helped me hold these pieces.
A PT who understands energy systems and neurological healing is essential for those with ME/CFS. I struck gold when I found Tony because he understands and has experience with both. I did not have to convince him that ME/CFS or occult tethered cord was real. It also helped that he has worked with several people with spinal cord issues, including tethered cord. A substantial portion of his practice has people with hEDS.
I spent about eight months seeing Tony weekly for myofascial release on my scar, manual stretching, nerve gliding, and strength training. Each week he listened to my feedback and always was encouraging, even if I spent weeks in a holding pattern or backsliding.
A new stable equilibrium
By January (6 months post-surgery), I crashed into a familiar place – debilitating dysautonomia, weakness, and exertion intolerance. It fit like a comfortable old shoe, predictable in its contours. Many people see gains after the “structural” surgeries (e.g., tethered cord release, cranial cervical fusion, Chiari decompression, and other related surgeries), only to see them evaporate after several months (this is an interesting phenomenon to ponder). Unlike many, I never thought my surgery would “cure” my ME/CFS, but I was curious about what, if anything, would improve. I figured my ME/CFS settled back in after a post-holiday crash. Thankfully, after three months, I regained some vitality. It felt like my pilot went on again. (Since writing this blog, I am back in this crash pattern and the uncertainty this brings).
Taking the reins
Around March 2022, I realized I needed to chart a path to my new life. I did not want to be a passive participant in all the changes ahead, as I have in so many instances in the past while navigating life with this disease. All signs pointed to separating sooner than later. It felt like I was staring into the maw of a fantastical beast, e.g., facing life on my own, having to do everything for myself, including raising a teenage son and managing a highly-energetic cattle dog. It was terrifying and still is.
Somehow, I survived three real estate transactions over three months. Starting in April, I bought a house, likely on the day the market peaked – those were the insanely stressful days of places selling within a day of listing, waiving inspections, and making offers well over the asking price. I found the perfect home after wondering if I would have to settle for something less than optimal. Next was the equally stressful process of racing to list our family home before rising interest rates cooled the market. I put a lot of sweat equity into making our home shine. Thankfully, after a few road bumps, we sold it within a week of listing. The final transaction involved helping my husband find and settle into a new place. How I survived all of this is a testimony to my improved function since surgery. I braced for a mega multi-month crash – it never came. There was plenty of wobbling, but I kept returning to my set point.
Through these months, I was barely human. My cognition suffered, and my appetite tanked due to worsening dysautonomia, but I was the comeback kid. The day before we listed our place, my Oura app clocked 19,971 steps – and I lived to tell the story! A year before this, I was in bed 20 hrs a day, unable to sit up and agonizing over the decision to get my surgery.
My new place sits on the edge of the eastern Sierra Nevada – I call the area behind my house the “back 40” (see banner picture). Within five minutes, I can drop to the edge of the wilderness. I often fantasize about strapping on my old backpack and disappearing into the wild for three months. I could do that from my back door! I cannot go far, but I can take my dog to fetch tennis balls and walk along the creek when feeling better. We also have enjoyable paths and trails in my neighborhood. When health, weather, and air quality (wildfires, ug) permit, I walk 20-60 minutes 3-4 times weekly. It feels revitalizing instead of something I push through. Every time I am out, I pinch myself and have a grin that spans my face. There is still a limit to how much I can do, but if you think of exercise tolerance as a sliding scale, I have slid up on it this past year.
Even if we cannot train our aerobic system, we can use other energy systems to build strength. I outline the rationale behind my rehabilitation approach here. I am focusing on building muscle and keeping my back mobile and strong, all in anticipation of the accelerating muscle loss I will experience as I age. I do this in two-minute blocks, then let my heart rate recover to my resting rate. My PT work occurs in fits and starts because managing my life takes a lot out of me now that I do everything on my own and have to get up at 7:00 every morning (!) to tend to my cattle dog Rosie and get my son off to school. All my newly found functional capacity goes into keeping my nose above water.
I don’t think these surgeries are a cure for ME/CFS, but my exercise intolerance has undoubtedly improved. I know of only two treatments published in the literature that ameliorate exercise intolerance in ME/CFS: Ampligen (a toll-like receptor 3 agonist) and regularly administered IV saline. I’ll add my own third N=1 experience – removing the tension and oxidative stress on my spinal cord caused by a tethered cord. While I can’t say what has led to my improved exercise tolerance, it is probably a combination of my surgery, treating orthostatic intolerance by infusing saline 5-6 days per week, and my IV antiviral treatment (cidofovir). I also believe that building strength and growing more mitochondria have yielded dividends.
Briefly, some aspects of my health are the same or worse since surgery. You can see the checklist of symptoms I have monitored since surgery here. My bladder dysfunction continues to decline. My cognition is still low, and my stress intolerance is at an all-time high – these are hugely challenging. Writing has been hard this past year – as you can see from the frequency and content of my posts. Most of the time, my dysautonomia limits me more than my ME/CFS. I still can’t figure out how mast cells contribute to the various things I experience, but I know they are a component of my illness. Last fall, I developed a new neurovascular condition restricting the range of temperatures I can tolerate. My Epstein Barr viremia requires constant vigilance. Thankfully, the symptoms I associated with cranial-cervical instability (CCI) have improved since surgery, and I seem stable on this front.
Healing is an additive process, at least for me. I don’t think there is a simple answer to finding your pilot light and relighting it. I have read so many recovery stories that felt preachy (you idiots, why are you not doing this already?), were unlikely to help me, came across as random, or as if the person had a different condition entirely. I often try treatments people touted only to see no benefit. It is frustrating to want better health but have no way to unlock it. By addressing my underlying exertion intolerance, I have incrementally inched my way into a better space and have built on those gains by adding more muscle. I hope to keep building on my health by refining my treatments.
Do I still have ME/CFS? Yes, but I am in the moderate category (wrt to exercise intolerance only)…for now.
* Wouldn’t you know, after I wrote this blog, I crashed again! As if I jinxed myself! I am two weeks into my crash and am hoping I will find my way back to my post-surgical equilibrium. I hope it is the result of a new medication or the toxic wildfire-choked air that is blanketing Reno. In the meantime, I am going with the flow.