Having Surgery Without a Neurologist Consult

We all know there’s a certain amount of risk with surgery and anesthesia under the best of circumstances.

Surgeons and anesthesiologists talk to their patients about the expected results and potential complications. This is called informed consent and it is required of them. They get your medical history and develop their plan of care.

Surgery and rare disease

In my experience, things take a turn when you have a rare disease such as myasthenia gravis (MG). The physicians may not have all the knowledge they need in order to provide us with a safe and positive outcome.

That doesn’t mean we need to fear having surgery, nor does it mean we can’t have a safe and positive experience. It means that we need to work with our neurologist and take an active role in planning our care.

My neurologist was not involved

I have had severe lumbar stenosis with nerve damage for years. My surgery took place in an outpatient facility. The staff met and planned my care, discussing some of the potential complications as well.

One very important thing I failed to do that nearly cost me my life was to include my neurologist in the plan.

Though I’m a retired surgical nurse, I have my dumb moments! I mistakenly thought if I provided my surgeon with a list of my other physicians, he and the anesthesiologist would contact the others before making a plan. That’s what I’m used to, but obviously, that didn’t happen.

Developing an infection

The surgery itself was uneventful. Thankfully, I recovered without any issues. I was released to go home the next morning. After about 2 to 3 days, I started having incisional pain, which greatly worsened over the next few days.

I had a post-operative appointment with my surgeon a couple days later. During his examination, he thought it to be a superficial infection, easily controlled with antibiotics. So, I was put on antibiotics for the next 10 days. I did not get better.

Visit after visit, we talked about my infection and how it continually worsened. Still, he kept saying it was superficial and kept me on the same antibiotics. My surgery was in March of that year. By, mid-July, my husband and I were finally able to get the attention of the nurse practitioner.

I’d been dealing with copious amounts of pus coming from my incision for months. My husband showed her that when he pressed on my lower back on the right side, pus came out at the top of my incision in the middle of my back. That indicated it was not superficial, but it was deep and severe!

Involved in our care

Due to the severity, I finally had an MRI and was admitted to the hospital for surgery. Afterwards, I was on IV antibiotics for 6 weeks and finally recovered.

I was still taking my myasthenia medication before, during, and after surgery, which lowered my immunity. Therefore, the infection set in. That was only one of the many complications that could have occurred because my neurologist wasn’t involved in that part of my care.

It’s very important that any time we have surgery, invasive or major treatment, and even dental work, that we first talk with our neurologist. Prior to surgery we want to make sure we they are actively involved in every aspect of our medical or surgical care. Our life and well-being may depend on it!