Six weeks post-SFT

A glass half empty

“Two steps forward, three steps back” has been my mantra these past three weeks (week 3-6 post-SFT surgery). My brain feels as if it has been suspended in an opaque, viscous fluid that mutes and confuses my days. Since my last update, it’s as if I have been inside a cocoon undergoing metamorphosis, the cellular transformation required before a new being can emerge.

My body is a dynamic and changing landscape right now. After surgery, I wanted to meet each day without pre-conceived ideas about the limits my illness imposes, especially about movement and exercise. This approach is easier to do on my better days, but it is hard not to be analytical when old symptoms come rushing back. Is this an ME symptom? Mast cell activation? Post-surgical healing? Or, something else entirely? This set of thoughts leaves me feeling frustrated and a bit blue. Living without chronic illness labels has been more challenging than I expected.

Surgeries that address mechanical problems (e.g., SFT and CCF) hold the potential of breaking free from post-exertional malaise (PEM). Several people with ME have seen their PEM resolve or improve dramatically, while others have not. I promised myself I would not be upset if PEM returned, but now I am unsure. Call me greedy.

The challenging part of my recovery these past few weeks has been my cognitive dysfunction. To call it brain fog belittles the experience. It feels neurological (vs. metabolic) – once I reach a threshold, I melt down and crash on the spot. Any attempt to continue using my brain and body is met with worsening symptoms. My memory is abysmal; last week, I had no recollection of a PT visiting me. She clearly was familiar with me, and even my dogs remembered her!

This type of crash feels different from my typical ME experience – there is no delay to my neuro crashes; they happen in real-time, sometimes in mid-sentence. It feels like the world is crashing in on me and, I have no way to stop it other than shutting everything and everyone out.

I had profound neurological meltdowns in the two weeks after surgery. The episodes now are similar but not as extreme. This similarity makes me think it is not ME at work but my nervous system trying to integrate new information, which takes enormous energy. Or, is this mast cell activation (MCAS), which seems to be a common complaint after surgery?

People keep asking me if I am overdoing it, a question that irks me. Fair enough, after all, I do have the title of Worst Pacer in the World. Before SFT surgery, adrenaline allowed me to push through just about anything at any given moment (apart from low BP or crash days). This time is different. I seem fine in one moment, and the next, I am not. That is not my typical ME pattern, which has a delayed response and brings on a specific set of symptoms. The threshold for being OK and not OK changes every day, even within a day. I have not been able to associate my brain crashes with specific activities and rather suspect a waxing and waning healing process at play, but who knows.

My low blood pressure has returned. After surgery, my BP normalized at 110/70 – a vast improvement over my low pre-surgery BP. Last week, I had one of my ultra-low episodes – waking up with a blood pressure of 78/45. It can take a few days to crawl out from that place. This triggered worsening cognition, which lingered even after my BP normalized. Home IV saline helps, but my EDS veins are knackered, limiting this treatment until I get a port.

I have been on Home Health these past three weeks, on the recommendation of my dear friend Christina. Being new to Medicare, I am finding it has its advantages! I have a social worker, OT, and PT working with me. The OT has shown me how to minimize twisting and keep my back neutral and safe. She had also served as a talk therapist when my frustrations with healing were running high. The OT and PT have given me a series of simple exercises, including supine movements I can do in bed. I am wary of the arm exercises – they are harder for me and tend to crash me more easily. I rarely can do what they recommend but do what I can.

The other set of symptoms I am trying to parse are in my head and neck. All head and neck symptoms gloriously disappeared for two weeks following surgery. In my third week, I started to see my CCI symptoms creep back in. CCI and surgical recovery could be the culprits behind worsening cognition. I am not that upset to see these symptoms have returned because I expected them to. Still, it doesn’t make me happy.

My dear friend Rachel has instilled the importance of caring for my neck, especially now that I have a cranial cervical instability (CCI) diagnosis. At her suggestion, I ordered a foam wedge pillow for when I am in bed (most of the time). It helps me sit up, and when I need to lie down, I can keep my back and neck in a neutral position while still working on my computer. I am limited in how much time I can spend in this position because it exacerbates my CCI symptoms.

I hope to see more gains in function as I heal up from this surgery, but it is hard not to be thinking about the next health issue looming on the horizon: CCI. I am finishing a post about my CCI I hope to share soon.

How do I stay present with life as it is and not spin out on what could be? How do I refrain from analyzing every change and trying to read tea leaves in my symptoms? I admit to being concerned about where I will land with post-exertional malaise (PEM) and my ME. I would love nothing more than to believe it has improved, but I have to avoid turning a blind eye to PEM. Exercise intolerance and weakness are the core features that separate ME from my other conditions. I’ll recognize it (I hope) when I see it.

A glass half full

I am learning that I have a choice: I can focus on all that is not going well or see all I have gained. The uncertainty over my inexperience makes it too easy to focus on what is wrong with my body. To fight back against this, I spend time outside in the fresh autumn air, whether taking a stroll with my dog Rosie or sitting in the yard. I try to focus on all the ways that my loved ones are showing up for me. I marvel at my ability to be upright.

The past three days have been encouraging. I have managed to avoid neuro meltdowns (well, by 7 or 8 pm, I am toast), even though I did PT, walking, ADLs, and used my brain. I am waiting for the neuro crash on most days, but it never arrived on three days last week. Yesterday my cognition was not as good, but I still managed to do PT, go for a short walk and make snickerdoodles for my son and his friends. My mood quickened from dark to bright at the prospect of making progress in my healing. The following day I did not have PEM, and all I wanted to do was go for a short walk when I woke up (said no ME patient ever!).

We live three driveways away from a beautiful trail that runs through Reno called the Ditch Trail and, and I have been on it about five times since moving here in 2017. Two days ago, I took my dog, Rosie, for a short walk. It was a perfect fall day – long shadows, crisp, smoke-free air, and rabbitbrush in full bloom. I hope to get back to my botanical roots and connect more with nature.

Feeling unwell in so many places in my body makes it hard to remember all that this surgery has given back to me. Before surgery, my leg and back symptoms associated with tethered cord syndrome were the loudest ones demanding my attention. It’s harder to appreciate the absence of symptoms.

Since surgery, so much has improved! Nearly all of my leg symptoms are gone or nearly so, even the neuropathy in my feet, which disappeared for the first three days but returned for a few weeks – a reminder to be more patient with healing. It still feels like my feet are on the edge of neuropathy, but it never seems to breakthrough. Same with the electrical sensations and muscle fasciculations – they are gone for the most part. I have not had any growing pains and no longer have deep thigh aches. All of this makes the surgery worthwhile to me, especially knowing that I have halted the progression of these symptoms.

What about my bladder, you ask? Well, that one has been all over the shop. I saw ~ 50-70% gain in function in the days after surgery, but since then, my symptoms have ranged from being the worst they ever have to the best I’ve seen in a long time. This can happen within a day! I am not upset about this situation, even though I hope to see clear-cut and lasting improvements. Sometimes it is too late to reverse all of the damage of tethered cord – the most compelling reason not to delay surgery if you have been diagnosed with this condition.

I keep reminding myself it is still early days.

In the next little while, I will transition to outpatient PT. I have a great neuro PT here in Reno.

I am taking these words from Dr. B to heart: “Once you get home, do a little bit more every day. Push your envelope rather than staying in bed or on a couch. The more you do, the faster you will recover, and vice-versa. Remember that half of the job is done by the surgeon, the other half is done by the patient.” He’s done his job, now is the time for me to do my part.

3 thoughts on “Six weeks post-SFT

  1. Thank you very much for sharing your tethered cord journey. This gives me a lot of hope. I realise now I have to get cracking . I have the same issues you mentioned and also the bladder issues which are very frustrating. I hope that the surgery came at the right time, and that you are able to reverse the symptoms you had with tethered cord. By the looks of things you are doing good.Having to do work yourself on your body is hard.

    I also have CCI . First things first for me. 1st teathered cord then the CCI.

    Trying to get a diagnosis here in Germany it’s almost impossible.

    Very much looking forward to reading how you are getting on.

    With very Best wishes from Germany

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    1. Hello Christina – Thank you for reading my blog! But I am so sorry that you are also facing these structural issues. It can be a long road to diagnosis with all of the moving parts required. It took me a long time to accept that I might have tethered cord syndrome (TCS). There are so many non-specific symptoms, and everyone seems to have their own unique combination. I often compared myself to the people with extreme cases but eventually realized that this was not a good approach. What matters is your own experience.

      You may have seen my blog (Reluctant Patient), where I discuss the differential diagnosis for TCS. I worked hard to rule out other possible explanations, but ultimately I had to take a leap of faith. Having EDS tipped the scales – when you combine all of the non-specific symptoms – bladder issues, neurological symptoms in legs, orthopedic signs (e.g., loss of lordosis in the lumbar spine) – with EDS, it starts looking a lot more like TCS.

      If you are not in the patient groups for structural issues on Facebook, I highly recommend them. They serve as important learning communities where patients can share their experiences with different surgeons and help others find the people they need locally. There is a strong European presence in these groups – I wonder if a query about doctors in Germany would be helpful.

      For many of us, the path involves finding local doctors who will order the tests you need. I am not sure how the German healthcare system works, but at the very least, you would need urodynamics and an MRI of your lumbar spine (without contrast). From there, most people move on to set up consults with specialists (most local doctors lack the expertise to assess tethered cord in EDS patients). In Europe, there are specialists in Spain and Italy, and possibly more. Most of us need to travel – I had to fly across the country to see a specialist.

      Good luck with your journey of ruling in/our tethered cord syndrome. There is a hugely supportive community out there ready to share their experiences with you. Consider joining the ME/CFS+ Brain and Spine group on Facebook if you haven’t already. Two other great groups are ME/CFS+ mast cells and ME/CFS+ Physical Medicine. Sending best wishes your way.

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