Six month post-tethered cord release update

Time for a six-month update on my spinal cord surgery on August 18, 2021! I’ll try to keep it brief (haha).

TL; DR – it’s mixed.

Bladder: I had high hopes for bladder improvement, which rapidly vanished in the initial weeks after my spinal cord surgery (called sectioning of the filum terminale, SFT). My bladder is about the same as before surgery, but there is still variability in function. It is tempting to say that I probably waited too long to do the surgery and incurred permanent neurological damage, but that sounds too convenient. The bottom line is I have no idea what is driving my bladder dysfunction. I am still managing OK (i.e., not needing catheterization) and rest a little easier knowing I can try a sacral nerve stimulator if things worsen. I will leave well enough alone for now.

Head and neck symptoms: I expected my cranial cervical instability (CCI) symptoms to be much worse by now. I think I have reached a stable impasse. I find myself wearing my cervical collar less and less (but have to wear it today!), but when my neck symptoms are acting up, I need to get in bed and rest in a fetal position. I still feel some of the heaviness in the suboccipital region, but my headaches are less frequent. I only feel the burning spinal cord sensation if I am overdoing it. The pulling/tugging sensation is still improved.

My second puzzle since my surgery. I love puzzles, but sadly, my neck does not. I couldn’t resist doing this one.

I have worked hard to protect my neck by keeping it in a neutral position, but just this past week, I cracked open my second puzzle since last June, an activity that puts my neck in flexion (bad for CCI). My head, neck, and paracervical regions are acting up again, so it is best to leave puzzles for now. I feel no need to return to see Dr. Bolognese for cranial cervical fusion (CCF) surgery any time soon.

Cognition: Brain fog started coming back a few weeks after surgery. Fortunately, the wicked mast cell flair I had after surgery has abated. I have been playing around with mast cell drugs and finding some success. I benefit from Benedryl and a small dose of lorazepam (which I use very cautiously, not to worry). I am amazed at how the sedating effects of these drugs are offset by a clearer mind.

Orthostatic intolerance: This symptom suite completely lifted in the first two months after my surgery. Before SFT, I was severely affected by OI (not caused by POTS, but hypovolemia and chronotropic incompetence). Sadly, it has started to creep back in, but not quite to pre-surgical levels.

Leg symptoms: Gradually, many of my leg symptoms have returned. When I was deliberating about the surgery, I started to see my raft of leg symptoms through a neurological and possibly tethered cord lens. My neuropathy reached an all-time high in December 2021 and January 2022. I had some other odd rheumatological-type presentations (another story entirely) and cannot determine where my neuropathy begins and ends. The neuropathy in my hands has also worsened (but it could be something else). Still, I have vast periods, like this moment, where it is not bad. Evenings are the worst time for this symptom.

The fasciculations in my calves started to return three months after surgery and are more frequent now. I don’t always have them, but it is undeniable that I am having episodes with lots of little micro-twitches in my calf muscles (this is not caused by an electrolyte imbalance). The constant buzzy feeling I had before surgery has returned but is inconsistent. I do not have deep thigh and hamstring pains anymore.

My gait is entirely normal, and I don’t need to wear high heels to feel comfortable while walking and standing.

I am thrilled to report that my “growing pains” have not returned, but I would not be surprised if I woke up with them again one day. This is the one possible tethered cord symptom I can trace back to my earliest childhood memories.

Mobility: I have been mainly mobility-device-free since I got home from surgery. The only time I need one is on the rare occasion that I go to the grocery store – I still use the electric carts they provide. However, the other day I left my walker in the car, not realizing I would have to stand in line while waiting to check-in for some hand X-rays. I immediately regretted my choice and needed to sit on the floor, like I did in the early days of my illness. I feel unwell when standing and even sitting. I get dizzy, lightheaded, foggy, and my trapezius muscles start to hurt. All of this is back and seems to be worsening.

Energy, stamina, and post-exertional malaise (PEM): Tethered cord surgery did not cure my ME/CFS, but it has given me more vitality. My color is better, I recover more quickly from PEM, and I am building strength. I have to balance my need to move with getting PEM, which requires a daily assessment. I had a month-long monster crash in January and wondered if all hope was lost. I tried to keep my cool, and with lots of rest, I stabilized my resting heart rate and HRV. I am back to tolerating 1-3 short (15 minutes) walks each week (unless it’s a bad week), but I am limited in how much walking I can do with a damaged aerobic energy system. I am increasingly bringing in new strength training exercises. Sometimes I go weeks before returning to energy-intensive exercises, such as arm work and split squats. I am watching this space closely.

Back pain: My lumbar pain is probably worse after my surgery. I have to manage my pain carefully with physical therapy, walking, cyclobenzaprine (Flexeril), and a heating pad. As long as I prioritize PT, I can avoid the worst of the pain. Every night I still need my heating pad and sometimes take cyclobenzaprine. I don’t need painkillers, so it is manageable from my point of view.

GI: The big surprise from my surgery was the improvement in bowel function. Around 60-70% of my days, I can have an unaided bowel movement – my friends who suffer from this affliction will know how huge this is. I have had somewhat severe IBD-C for years, requiring daily coffee enemas, psyllium husk powder, Miralax, and senna tea to keep things moving (TMI, lol?). I have stopped taking Miralax and the rest of the lot. I still have to do coffee enemas, just not nearly as many.

Another very welcome surprise is that my appetite is so much better now! I went for years without an appetite. It’s not like I am a chowhound now because I still get full quickly, but it is so nice to enjoy food again and crave it instead of having an aversion to eating. I have some more meat on my bones.

Overall: Last week, I hinted to my PT that maybe my surgery wasn’t so worthwhile. He shut me down right away and told me that I am like night and day compared to when I first hobbled into his practice with my walker and cervical neck brace and had to lie down. I knew this and felt silly for even supplying any oxygen to the idea. I quickly retracted my statement.

It’s true; I am doing so much better overall than I was before my surgery. I am more active, handling physical therapy OK, managing more activities of daily living, keeping some weight on, sleeping better, and being in more of a routine.

It is also true that I very much still have ME/CFS and several of the challenging co-morbidities that come with this disease – EBV viremia, pretty bad hypovolemia, dysautonomia, mast cell activation syndrome, and some other fun stuff.

Most importantly, I have learned much about my illness and myself during surgical recovery. As long as I am learning, growing, and healing, I remain steadfast on this journey.

SymptomJust after surgery3 weeks 6 weeks 3 months 6 months
Post-exertional malaise 100%100%90%60%*30%
Bladder function70%40%20%20%0%
Leg muscle fasciculations100%100%100%95%80%
Restless legs (body)100%100%100%95%50%
Thigh aches100%100%100%100%100%
Shimmering waves down legs100%100%100%100%90%
Gait issues100%100%100%100%100%
Electrical sensations in legs100%100%100%90%70%
Suboccipital pain100%70%60%60%50%
Cognitive dysfunction Hard to say with the drugs30%40%40%**40%
OI (ability to be upright)90%70%60%60%40%
Bowel function(hideously worse from opioids)20%20%20%40%
Mast cell reactivity Horrible (!) from surgery drugsStill badBetterBaselineBaseline
Coat hanger pain 100%100%50%40%40%
Need to be in a fetal position (CCI)100%70%70%60%70%
Neck pain100%70%60%60%70%
Neuropathy in feet and calves100%30%20%0%0%
Low heart rate 100%100%100%80%***60%
Low blood pressure 100% (hypertensive!)80%20%0%0%
Paracervical pain 100%90%70%60%60%
Appetite0% (yucky hospital food)30%50%50%50%
Table 1. List of symptoms and improvements (percent improvement) relative to pre-surgery baseline. After surgery, the initial gains were profound – especially the upper-body symptoms related to cranial-cervical instability and OI. For example, my OI is 40% better now than before surgery. This is was likely a function of the surgery drugs, which I anticipated.

Some vignettes from the past three months

Physical therapy has been my salvation since my surgery. I have continued to add more PT exercises and have myofascial work on my surgery scar and adjacent areas every week. My goal in post-surgical rehabilitation is to find stability in my PT routine. It is a moving target and far from linear. I have had several weeks of hitting is just right, but most weeks, I overshoot (or undershoot). This is bound to happen with a fluctuating illness operating in the background. I am trying to use resting heart rate and HRV measurements, paired with how I feel, to guide how much activity I do.

Since my last update, I have managed to work through the profound neurological overwhelm I describe in my previous blogs. I realized this only recently when I reflected on how much more is on my plate right now – and that I seem to be handling it for the most part. This is not necessarily a good thing, as I have a pathological proclivity to say yes to far too many activities and people. I’ve had a lot more emotional stress in the past few months, which still undermines my ability to do my PT. I wanted to carve out a space where healing could remain my top priority, but sometimes it is hard to find life’s volume button.

As I described in a previous blog, I feel like my surgery re-lit my pilot light. One day I can feel like I did on my worst days before surgery, only to pop back up the following day, like a wilted house plant that’s finally been watered.

I didn’t feel well enough to travel with my family to California for Thanksgiving due to my neck instability. Still, I did manage to make an entire Thanksgiving dinner for two friends. Before getting ME, I loved planning elaborate dinner parties, doing the shopping, and of course, the cooking. I marveled at my ability to rub elbows with other shoppers and was astounded that I was not profoundly crashed following the festivities the next day.

I continued to do very well throughout Christmas but turned away from PT and toward baking Christmas cookies – one of the only parts of Christmas I really enjoy, other than having a tree. What was not helpful to me was all of the sugar I ate! Note to self: sugar is not my friend. My physical therapist has always said that activities of daily living, such as activities like standing walking, are the most important.

By Christmas, I finally felt ready to attempt being a passenger on a long car ride and did just fine on our trip back to California. Wearing my cervical collar, putting the seat back, and resting my head on a pillow, seemed to help my neck. I behaved like a healthy person during the holidays – I made some meals, a cake, socialized with family, did PT and strength training with my son, and went for a longish (30 minute) walk. I had to rest a fair bit, but the main point is that I could do all of these things without feeling too crappy. I wondered if this marked a new level in my healing.

After Christmas, I started to notice the telltale signs of extreme autonomic stress but brushed it away. I was having long runs of PVCs to the point where I couldn’t get my heart rate apps to work reliably because my heart was unstable. I knew in the back of my mind what was coming next.

Before the New Year, I crashed hard. The cardiac stress was a harbinger of an autonomic nervous system crash. For the entire month of January, my numbers were grim. I had very low HRV, a high LF: HF ratio, and little total power. This mapped onto my symptoms; I felt like a rag doll – so weak and unable to even think. I had to rest in the least effortful way possible. My resting heart rate was uncharacteristically elevated.

Getting out on the ice was so much harder than I thought it would be, but at least I tried!

I have managed to crawl out of the mega-crash that started off in 2022 but still feel like I am on wobblier ground. This past week I decided it was time to attempt figure skating – a sport I had to give up in 2015 when my condition worsened. After six months of PT, I felt ready to give it a try. Besides, I needed to do something empowering to beat back against some difficult changes underway in my life. I wanted to feel free, strong, and independent. I didn’t feel well but went ahead anyway (never a good idea with ME/CFS). Even getting my skates on was too much! It took several laps around the rink before I felt some confidence growing, but after 15 minutes, I realized that skating is not a good sport for me now because it is too aerobic. My legs felt strong enough, my balance was better than I thought, but I was using the wrong energy system to propel myself. I am still in a nasty crash from it ho-hum.

Pacing is more challenging now because my 2-day CPET results are no longer relevant after surgery. My resting heart rate has been elevated by around 10 beats since August 2021, but I think it is slowly dropping again. An elevated heart rate at this point might be a sign I am doing far too much and am making my ME/CFS worse. – my Oura ring seems to validate this hypothesis. I would be curious to re-do my 2-day CPET to see if my exercise intolerance has improved or if I am fooling myself that I have broadened my envelope.

All of my adventures in post-surgical rehab have been mixed at best. Still, I have learned so much about my body, the adverse interacting effects of stress and physical activity, and the fact that I most decidedly still have ME/CFS. However, my trial and error, under- and over-shooting, have shown me that strength training is probably the best bet for me right now. I can do it safely if I stick to 2-minute intervals, followed by resting until my HR recovers. I will keep going as long as it will (safely) let me.

Stay tuned for my next blog…I discuss my post-surgical approach to physical therapy.

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