Informed Consent

I’m sorry for being silent so many days. This is a very difficult time for me. Just two weeks ago I underwent an operation called a laminoplasty. My cervical spine was pressing on my spinal cord. An MRI revealed the constriction was quite severe. I was referred to a neurosurgeon.

Mrs. Lion and I met with the surgeon who explained that there was a relatively simple procedure to open up vertebrae in my cervical spine to give my spinal cord more room. He made vague references to improvements in physical issues that I had suffered recently. He didn’t say what, if any, consequences would occur if I didn’t get the surgery. However, he made it clear that he thought it was quite necessary.

Based on his assurances, the surgery was scheduled. As anyone who has gone through any kind of surgical procedure knows, I had to sign a load of releases asserting that I understood the risks associated with the procedure. The risks went everywhere from death to total paralysis. I was also informed that there is a rare condition called C5 palsy.

This condition, that occurs in about 5% of cases, results in a combination of partial paralysis of one arm and/or shoulder pain. The surgeon minimized the amount of pain I would suffer and suggested I would need opioids for less than two weeks. He claimed most of the pain would be from muscles he had to displace and would be insulted by the movement.

It was obvious that this was not trivial surgery. I expected to spend some time in bed recovering from the surgical wound and the aftereffects of anesthesia. I was given no other information about post-surgical recovery.

When I was transferred to my hospital room I discovered I couldn’t sit up on my own. I simply didn’t have the strength. I noticed that the nursing staff had put a walker next to my bed. I told the nurse I needed to pee. She and an assistant got me to my feet and held a urinal under my penis. No matter how hard I tried I couldn’t pee. The nurses brought in an ultrasound machine and determined my bladder was full.

They got a catheter which was painfully inserted and drained the urine. They then removed it. I asked if this was typical. I got a vague answer that was most unsatisfying. Apparently, hospital personnel are instructed to avoid directly answering patient questions. I posed the same question to the surgeon later in the day and he sidestepped it neatly.

Meanwhile, about every hour someone came in and asked me my name, asked me if I knew where I was, and what day of the week it was. They would then test my reflexes at various points in my body. I took it this was a standard neurological exam. Again, when I ask questions I was referred to the surgeon. They wouldn’t give me a clear explanation about why I needed all these tests.

I think you get the idea. I was physically helpless and had absolutely no idea whether this was a permanent condition or not.

Mrs. Lion learned how to help me sit up and push myself up to a standing position inside the walker. After the second day I was able to urinate on my own. After four days in the hospital, I was released and Mrs. Lion drove me home.

Very slowly, I’ve gained some strength. I can sit up on my own and pull myself up into the walker. I can even take some steps without leaning on it. My right arm is basically useless. The reason I know I have C5 palsy is that the day after my surgery the surgeon  sent me for a MRI and when I asked the operators why I was getting the procedure, they told me it was to look for the C5 palsy.

Today, I have enough strength to sit at my desk and write this post. I also wrote an email to my primary care physician outlining my difficulty getting information about my condition.

I think that my problem isn’t unique. Because I write and have an audience, I’m able to at least begin to hold the neurosurgeon and his cohorts responsible for their lack of patient care.

I’m not claiming that the surgery was botched. I think it was probably done quite competently. I also suspect that what I’m going through is related to shocks to my spinal cord as it moves into its new, roomier home.

However, all the suppositions are coming from me alone. None of the medical professionals I would expect to help me are saying a single word.

I’d like to thank you for your helpful comments about recovery and compensation we can do to make my life easier. Even though I haven’t been able to respond myself, I read every word and appreciate the good advice.

Mrs. Lion and I are strictly on our own. I’m pretty sure this is due to the fact that hospital lawyers want to protect their institution by having its employees say as little as possible to patients who are having trouble. For me at least, this is a humanitarian problem. I’m not interested in suing anybody. I just would prefer a little human kindness and support.

3 Comments

  1. I am shocked and dismayed to read of your situation. Thank you for sharing so vulnerably. Know that there are people who genuinely care and are holding you in thoughts and prayers for your recovery. Wish there was more I could do personally. Hang in there!

  2. I’ve recently gone through a similar experience with the surgery of a loved one. The surgery was well-executed, but there was little to no transparency on post-op status and expectations. We’re many weeks into it now, and still don’t know how normal the recovery (or lack thereof) has been. It adds unnecessary stress, especially considering the process is such an unknown. Even a narrowed tailoring of possibilities would be welcome, but such answers aren’t forthcoming either. It seems this is a systemic, institutional issue that needs improvement.

    I am encouraged that you’re writing and improving, how ever incrementally.

  3. I agree, this doesn’t sound like malpractice; however, I’m very much a lay person in medical matters. It does seem that you could be (much) better informed.

    One thing I have noticed over the years is that, if you’re considering a lawyer in any capacity, retain one first and have him (or her) in your back pocket *before* you make the slightest mention of the fact. The instant you do, all cooperation will stop dead, and suddenly the fall-back position will probably become a necessity.

    If you do think a lawyer would be a good idea, or a second medical opinion, I strongly recommend searching in the “Kink-Aware Professional” (“KAP”) listings. We’re good friends with a well-known doctor who now handles alternative-lifestyle cases almost exclusively. In the past, I’ve seen several lawyers providing listings there as well.

    Best wishes for your continued recovery!

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