A Pained Life: Tell Me All the Risks

A Pained Life: Tell Me All the Risks

I realized the other day I have been miscounting how many surgeries and procedures I have had to try to stop my facial pain.

I have been using a count of 12, and I’m currently struggling with the decision of whether to go ahead with number 13.

There have been 4 outright brain surgeries and 2 procedures where they inserted a needle through my cheek and into the trigeminal nerve.

bigstock-medical-exam-7540763Numbers #7 through #11 involved implanting or removing stimulator implants.

The first was a dorsal column implant. It helped, a lot. Then I lost it to an infection, unrelated to the implant. A year later another one was implanted. That did not help and was also lost to an infection unrelated to the implant.

The last surgery was an experimental implant in my brain. It worked but failed about a year ago, after having been in place for over 20 years.

All told, that is only 11 operations or procedures. I debate with myself about counting the last implant, which was operation number #12 for pain, but #13 if I count them all.

I wrote about my neck “falling down” in an earlier column. Number #12 was the surgery to fix my neck.

Does that count? Not really, because it was not surgery for pain.

On the other hand, yes it does, because it was the result of complications from surgery #6.

My doctor told me some of the risks of the operation. What he did not tell me, what no surgeon has ever told me, were the potential risks of what they had to do to get to where they were going.

My neck “fell down” when, in order to get to my brain, they did a laminectomy and took out too much bone. I was never told about the laminectomy or that there could be damage as a result.

We are used to asking about risks, no matter what we are seeing the doctor for. Are there risks with this drug you prescribed? How can I be hurt from this operation, this treatment or this procedure?

Whenever we do something repeatedly it is easy to forget all the steps we have to take to complete the task. The same is true for doctors. I don’t think it ever occurred to him to talk about the risks associated with the steps necessary for him to get into my brain because he didn’t think of that as separate from the operation.

It is another step we have to make to be truly informed. We have to ask, “How are you going to get to where you want to go? How will this drug or treatment make me feel before it helps me?

If we know all the risks, it not only helps us be better patients but it makes the relationship between doctor and patient easier. It reduces the accusations of “You didn’t tell me about this.”

It is one more instance where it pays for the relationship to be a partnership rather than adversarial or with an imbalance of power.

Every time my neck hurts I immediately feel the anger, “Why didn’t he tell me?”

If he had warned me, I would probably have the anger still — but it would be directed at my neck and not at him for not telling me all the risks.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

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I recall, back in the early 2000’s, when there were not many forums or possibly none at all, asking the pre-op nurse specific questions about what would be happening during surgery and what I would wake up with after surgery for TN. The pre-op nurse assumed that my only concerns were cosmetic and never wavered from that presupposition despite what I would say. It is not always easy to move medical personnel from their preconceived notions, after all, they know what they are doing, why do we need or want to know?
Now one can go on-line, back then there was about one or two paragraphs available anywhere about TN. We have come a long ways in terms of information and awareness.


We assume that a dr will tell us what we want to know, as if they were mind readers. We need to be detailed and specific in our questions and concerns. We also need to rememeber that the answers we receive now about something may not be the same answers we would receive at a later date. So just because we asked about something today, doesn’t mean if it comes up again in a year that we don’t ask the same questions all over again.

Do your research. The internet can offer reliable medical information, if the site is a medical one. There are also public libraries and libraries at medical school where you can do research.

You can also go to patient forums and read about other patients experiences and ask questions. Just remember that the info the people on these forums disclose is limited to what they want to share.