Lacertus syndrome and the quest for diagnosis

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An excerpt from BATTLE SCARS: A courageous memoir of one person’s life experience within our health care system.

The main part of my memoir focuses on the journey which led to my eventual recovery from Lacertus syndrome. I now have a name for my condition but am yet to understand why I’ve been struck down by this syndrome on two separate occasions following visits to the operating theatre.

My story, however, is not specifically about Lacertus syndrome but rather can translate to anyone suffering from a condition that’s rare and undiagnosed. As Professor Weinrauch reminded me, my condition was merely the medium through which my journey unfolded. The bigger picture was that my condition was rare, and even though I’d previously experienced it, I repeatedly failed to convince medical practitioners of what needed to be done. Part of the reason being, that since the 1950s, there have been only fifty-odd publications on its diagnosis and treatment. Lacertus syndrome might be classified as rare, simply because there’s minimal information about it. How many people are undiagnosed and suffering from it, is anyone’s guess.

Medicine is continually evolving. There’s a plethora of medical papers published daily. It’s hard, if not impossible, for anyone in the medical profession, irrespective of their specialty or sub-specialty, to keep abreast of the continual influx. There are so many people suffering from so many rare disorders that these patients pose unique challenges for the correct diagnosis and treatment. To these patients I say, keep copies of all correspondences. To the medical practitioners, I request that you work with your patients, so you can both move forward.

Throughout my fourteen-month journey, I interacted with forty-nine doctors and traveled all over Australia. The doctors I had the greatest respect for were the ones that bravely said, “I don’t know what your problem is, but let’s work together to find out.” Unfortunately, these doctors were few and far between.

Most doctors felt the pressure to come up with a diagnosis. By the time I’d seen twenty doctors, I had twenty different diagnoses. Doctors who were unable to give my condition a name resorted to, “There’s nothing that can be done,” “The destruction is irreversible,” or “Learn to live with it,” and then I was promptly shown the door with non-verbal cues to never return. On reflection, it doesn’t surprise me that these doctors preferred to practice defensive medicine or to pass me on to their colleagues because they simply didn’t know. Many were specialists who felt the need to give answers when there were still so many questions begging to be asked. Was I guilty of forcing a diagnosis out of them? Maybe I was. But not once did I directly or indirectly dismiss them, their knowledge, or their skills if they were unsure. These doctors chose to give up, whereas doctor number 49 pushed forward to give me an opportunity for recovery which I experienced within two days.

As a society, we don’t allow doctors to be human. We make assumptions that they’re all clever, and hard-working and that when they graduate, they’re handed their medical degrees along with a magic wand to eradicate all that ails us. We idolize doctors and put them on unrealistic pedestals and I’m as guilty of this as the next person. We not only expect, but demand perfection from them, and when things don’t go according to plan, we are quick to point our finger demanding their blood.

Due to the ease of finger-pointing and blame, doctors understandably walk on eggshells. Many people are quick to take the legal path forcing many doctors to quickly offer a financial settlement to make the problem go away. In situations like these, I ask the question—Does anyone really gain? Isn’t it better to identify the cause of the problem and ensure that its recurrence is reduced? There needs to be an environment that supports the medical practitioner as well as the patient when things go wrong. They both need to be on the same team rather than opposing ones. The culture in medicine can only be changed if mistakes are openly shared with no finger-pointing of blame, and those reporting them are rewarded for creating opportunities for improvements.

It goes without saying that wherever there is human involvement, errors are unavoidable. There are a lot of near misses and incidents that are continually swept under the rug. Doctors, nurses, paramedics, and administrative staff working in medical environments all over the world, will be silently nodding their heads just now. They all know that mistakes are far more widespread than the general population is aware of.

No one purposely makes a mistake. We’re all human and to err is human. There are many words of wisdom on mistakes: It’s alright to make mistakes as long as you don’t repeat them; it’s preferable to make a mistake by trying something new, rather than not trying at all; we learn by making mistakes. I can keep going on, but the difference is when you or I make a mistake, we are unlikely to kill or maim someone. It’s a different view when you’re in the trenches and it would be inappropriate for me to offer superficial solutions.

I consider mistakes are an opportunity to improve and shape the future. Following my experience with the retained drain, I was invited to a meeting with hospital management. The outcome of this meeting was positive, with the development and implementation of new nursing guidelines for drain management.

With my recto-vaginal fistula caused by a mismanaged labor, there was an internal hospital enquiry, but the exercise would’ve been of greater benefit if I, the patient, was also invited to attend. To move forward, there needs to be open discussions, rather than those that are one-sided and conducted behind closed doors.

After my operation on the wrong leg, many hospitals developed and implemented better administrative systems. Pre-operative markings are now recommended to clearly identify the intended site for surgery, but unfortunately for whatever reason, not every surgeon or every hospital follows this system.

Dinaaz Lentin is a patient advocate and author of BATTLE SCARS: A courageous memoir of one person’s life experience within our health care system.

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