My mom’s healthcare coordination is complicated, but necessary
Caring for my mom is a constant process of exploring, learning, and relearning
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My mom has never seen a neurologist, although she has a neurosurgeon who has been treating her spinal stenosis. She underwent spinal decompression surgery two years ago, a year before her diagnosis of hereditary transthyretin amyloidosis with cardiomyopathy (hATTR-CM). It was only after that diagnosis that we realized her spine issues could have been caused by the same underlying condition.
These symptoms — numbness and weakness in her legs, lower back pain, and even heart failure — are common health issues that come with aging. It takes a meticulous mind to navigate from specialist to specialist and take note of the obvious, and not-so-obvious, connections between them. I only started taking a more active role in my mom’s medical decisions after the scare that led to her diagnosis last year, and I still find it challenging to gather and process everything I learn online, in webinars, and from her various doctors.
The first doctor to raise the possibility of a link between her spine issues and amyloidosis was the cardiologist who diagnosed her hATTR-CM. But at the time, we didn’t pursue neurology right away. The priority was starting the stabilizer tafamidis and seeing how her body responded. Fortunately, her heart condition stabilized, so her attention turned back to her spine.
A delayed, but hopefully more informed, medical decision
Her walking ability hasn’t improved much since the spinal decompression surgery. She still feels numbness in her left leg, along with tightness in her lower back where the surgery was done. She can only take small steps and relies on canes for balance. Her neurosurgeon, who has been monitoring her bone recovery since the surgery, recently informed her that the bones had healed well and recommended a second surgery to remove the screws, which should relieve some of the tightness in her back.
The idea appeals to my mom, since her spine is what physically limits her most right now. I’m hesitant and have told her that we should look into it further. Weighing this decision amplified something I’d already been thinking about: the need to see a neurologist, ideally one familiar with hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN).
We still don’t know whether her spinal stenosis is age-related or was caused by amyloid buildup. When she went into the decompression surgery two years ago, she was hoping for real improvement in the numbness in her leg. But if the nerves had already been damaged by amyloid deposits, that expectation might not have been realistic, at least not fully. What will help us decide on the hardware removal surgery today is having reasonable expectations about the benefits and a clearer picture of the risks.
Exploring, learning, and relearning
I find that caring for my mom is a constant process of exploring, learning, and relearning. We are walking in both known and unknown territory — not just the condition itself, but the healthcare system around it. We’re searching for our way in unfamiliar domains and resources we didn’t know existed. If it weren’t for a loved one, I can’t imagine that I’d have the patience to go through all of this.
After researching a few hospital websites and Taiwan’s Ministry of Health and Welfare site, I found a neurologist experienced in treating hATTR-PN who is also accepting new patients. As it turns out, the neurologist also runs the MAGNITUDE clinical trial in Taiwan — a study I’d wanted to learn more about. It feels like the stars are aligning, even though we’ve only taken the first step by making an appointment with the doctor later in September.
A wise friend of mine often reminds me that the present moment is manageable even when everything else feels like too much. I try to hold on to this reminder every day as I research and plan for my mom’s care. It helps that I genuinely enjoy learning new things. So no matter how small the progress, I’ll take one step at a time, and celebrate each one along the way.
Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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