This blog will chronicle my progress after detethering surgery (SFT) on 8/19/2021. I expect my healing to be non-linear but hope for an overall upward trajectory. You can read more here and here for background on my surgery and why I decided to go forward with it. Check back here for future updates.
THREE WEEKS post SFT
Today (9/9/2021) marks the three weeks since my detethering surgery. I promised myself I would take each day as it came and avoid extolling any improvements until I passed the two-week mark. I have witnessed people sharing their post-surgical gains in the days following surgery, only to go quiet when gains are lost or new problems arise. I am mindful of the powerful effects of steroids, opioids, and benzos and that these drugs can mask many symptoms, providing an overly optimistic view that may wear off when the drugs do. Time will tell.
- Orthostatic intolerance disappeared for the first two weeks! In my third week, I am entering a stage of fatigue, and being upright is a little harder again. It was a joy to feel free of OI – being upright brought on my most vexing set of symptoms before surgery.
- Suboccipital (base of the skull) headache = gone. It returned one night after overdoing physical activity. I went for a walk with my son that was too long, and that evening I woke up with a suboccipital headache and gravelly neck. Thankfully, this dissipated within 24 hours. I expect some of these symptoms to return, given that I have horizontal and suspected vertical instability.
- Neck crunchiness – mostly gone unless I overdo physical activity.
- Paracervical pain – gone. My trapezius muscles are free of pain.
- Burning sensation in the brainstem and spinal cord – gone.
- Fatigue – disappeared for the first two weeks but has returned. My post-surgical fatigue is very different from PEM – I am fatigued because my body is working hard to heal. Since surgery, I have not had PEM but have tested these waters only a few times (e.g., walking too long). I will find out more at around the six-week mark when I start PT in earnest.
- Brain fog – gone during the first two weeks! Sure, I was under the influence of heavy drugs (methadone, ketamine, propofol, Dilaudid, dexamethasone, diazepam, etc.). Despite this, my brain felt clear and fresh in a way I had not experienced in a long time. This improvement started during ICT. My brain fog is creeping back in now, but I am unclear if it is like my pre-surgery brain fog.
- Hemodynamics/dysautonomia – I was unusually hyper-adrenergic during my hospital stay (BP 150/110!), but my heart rate and blood pressure have stabilized and returned to pre-surgery levels. Before surgery, my BP and HR dropped down to zombie levels – BP 75/45, HR 40-45. My BP is holding at 100/70, and my heart rate is in the 50s. Since surgery, I have not seen a significant drop in blood pressure or heart rate, so perhaps that is a slight improvement? `
- Bladder function improved by 70% during the first week (!) but has reverted to my pre-surgical state. As I finish my third week post-surgery, my bladder function is highly variable and could be tied to overdoing physical activity. Overall, my bladder is at about 20% improvement relative to my pre-surgery state. I will be watching this space and am trying not to be disappointed if this is the best it gets.
- Burning feet/neuropathy – gone during the first three days but has returned. The burning in my feet is a fluctuating symptom, and I still have periods without it. I suspect much of my neuropathy is from the many prescription drugs I have taken over the years to manage my illness. My neuro PT told me that neuropathy could take longer to heal. He is hopeful there may be some further gains.
- Growing pains – I have not had any since surgery! I am cautiously seeing if they return. A drop in barometric pressure can trigger them. I will be watching this space when the winter fronts come in off the Pacific, which brings a significant pressure drop.
- Muscle fasciculations – gone! However, my legs feel like they are often on the verge of fasciculations. I still have a little burning/odd feeling in my lower calves, but no fasciculations.
- Shimmering waves down thighs – this symptom is triggered by needing a bowel movement and has not improved since surgery.
- Leg pains – mostly gone, apart from neuropathy in my lower calves.
- Gait problems – hard to say. I still feel more comfortable in heels and walk gingerly and awkwardly, but that could be due to post-surgical healing.
- Bowel function – After being in post-surgical constipation hell, I think I see some improvements in my bowel function. I have been able to go #2 without a coffee enema, but this could be from drinking all of the senna tea, Miralax, and psyllium husk I consume. I used these aids before surgery, so perhaps I am seeing some improvements in this space?
The most significant gift of my surgery is that it has led me down a new path of reckoning and reconciliation in my life. I was fortunate to have my best friend since 2nd grade with me to process many aspects of my life that needed a fresh perspective. I liken it to a portal opening and having the courage to step through it. I wonder if the ketamine I received during surgery played a role?
I have not had any new problems arise, apart from surgical healing and the limitations it imposes.
I’ll provide my next update at the six-week mark.