Saying so long to a year of countless doctor appointments

It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I have on average each year, but I quickly lose count.

Although I spend much more time with my medical team than healthy people do, that’s just routine for those of us living with SMA. Last year was a bit of an exception, though. Even by my standards, I had a lot of visits with doctors.

Meet (part of) my medical team

The first of the extra appointments began early in the year, when my gastrostomy tube (G-tube) malfunctioned. A small water balloon holds it in place, and we withdraw the contents regularly to check that the amount is correct. When nothing came out one day, it meant that something was stopping the contents or the balloon had sprung a leak. Either way, my tube needed to be seen by the surgeon who placed it when I was 13.

Naturally, the balloon functioned perfectly at the surgeon’s office, but he still replaced it to be safe.

Recommended Reading

December 13, 2024 News by Lindsey Shapiro, PhD

Swallowing problems in SMA may be declining since advent of DMTs

He also replaced it again a few months later, after a routine change by a home-care nurse yielded unexpected resistance and discomfort. The surgeon noted some scar tissue that may have been interfering, but fortunately, that’s not expected to be a continuous problem.

While it’s not ideal to have something go wrong with the feeding tube, I do appreciate the opportunity to see my surgeon and his caring staff. He saved my life multiple times during my last hospitalization, and I always feel safe in his presence. Although I’m now much older than most of his patients, I’m grateful to still be welcomed with open arms in his office.

I also spent some additional time with my ear, nose, and throat (ENT) doctor, who normally sees me to advise on the maintenance of my tracheostomy or clean excessive wax from my ears. These visits, however, were caused by the unexplained draining of blood from my ear on two separate mornings. That wasn’t a comforting way to wake up, but everyone at the ENT office was calm and reassuring.

Aside from dried blood sometimes muffling sounds, my hearing seemed unaffected, and a pressure test confirmed there was no damage. In fact, the doctor declared that the eardrum looked perfect!

During the second visit, the nurse practitioner found a small, scabbed sore in the ear canal, which was treated with antibiotic drops that made me feel better than I expected. But no one knows what caused that or the sudden bleeding. It might always remain a mystery.

The bulk of my extra appointments were of the dental variety. It began in spring when a routine cleaning led to the discovery of a decaying back molar. The dentist recommended extracting it, but an oral surgeon would be required for that.

You might think that’d be easy to find, but it turns out that the dental industry lacks professionals who specialize in the unique needs of SMA or neuromuscular patients.

With SMA, it’s important that any dental care plan consider the effects of my weakened breathing and swallowing muscles, especially if it’s invasive. There’s also the challenge of accessing the tooth when I’m unable to open my jaw enough for the standard tools to fit inside without causing damage. Any plans we make must meet my medical needs and also preserve my daily quality of life.

I’m not the only one having a hard time finding someone to provide this kind of care. I have friends in the SMA community across the U.S. who’ve had similar difficulties accessing necessary dental care.

This search has been frustrating and stressful, particularly at times when I felt unheard by people who should’ve been compassionate in listening and helping, and I still have no solution. But I’ve also met kind people who respected me and treated me as an equal person. I’m grateful for those people, including my regular dentist and hygienist, who are working with us to continue keeping what’s left of the tooth clean, infection-free, and painless.

Keep in mind that all of this has been atop a multitude of routine appointments, but I have the best medical team, made up of trusted, knowledgeable people who help keep me healthy and enjoying life to the fullest. It makes seeing them a positive experience; I even look forward to it. But as much as I love them, I’m still hoping to spend a little less time at doctors’ offices this year.

Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.