A Medical Enigma I’ll Never Understand

By Pat Akerberg

I recently read Carol Levy’s column describing a medical enigma about a new pain-relieving medication. Carol and I both suffer with the same debilitating condition -- trigeminal neuralgia (TN) – so I was intrigued to learn more about it. Important to note that she has suffered with TN twice as long as I have. Bless you, Carol.

The new medication by Vertex Pharmaceuticals is suzetrigine, which the FDA is fast-tracking with a priority review.  For all the hype, it turns out that suzetrigine is only being studied as a treatment for acute pain and diabetic peripheral neuropathy.  Along with Carol, I had hoped this medication would be something for all of us in pain. Most especially since there hasn’t been any new pain medication for two decades. 

Here’s the medical enigma about the condition we suffer with that I’ll never understand.  Simply put, why can surgeons perform a microvascular decompression (MVD) brain surgery on TN patients when they cannot offer treatment for a bad outcome that might occur (and does 20% of the time)? 

And what happens if the neurosurgeon lies to you before the surgery and falsely claims that he/she can reverse any unwanted outcome? 

As background, I was struck with the lightning bolts of TN in 2009.  Because I wanted to return to work pronto, I chose to have MVD surgery in 2010 that was recommended to halt the horrific pain.  Instead, I wound up being harmed even further by the surgery.

Fast forward to the present, and I’ve been seen by 11 neurologists in my area who were all Ill-equipped to understand TN, let alone how to treat my worsened condition. 

So, I understand the rise of Carol’s hope and excitement about a possible new medication that might help alleviate the neuropathic pain we suffer with. The worst pain known to medical practice is TN, and the idea that using disappointing treatments like Tylenol or suzetrigine for it is truly unfathomable. 

But here’s what else I really don’t understand.  If surgery is allowed for TN, then why is the medical profession unable to deal with the unfortunate, damaging outcomes from it that happen to hundreds of patients like me? 

I’ve been told by neurosurgeons that training in medical schools for TN is woefully lacking.  Yet somehow performing surgeries for TN or other challenging conditions persists, especially for controversial surgeries that don’t have a good track record 6 months later. 

When I asked the neurosurgeon who performed my procedure what went wrong during the surgery, his response was: “No one ever told you that surgery was without risk.”

In other words, “You knew the risk and you chose to do it anyway.” 

Then he told me I should find a psychiatrist since I was so “anxious” about my unfortunate outcome. So much for his emotional intelligence and integrity (or competence for that matter).

Again, who wouldn’t be anxious if they underwent brain surgery thinking they would be rid of the wicked pain, only to wake up in worse pain through no fault of their own?  Imagine my shock afterwards when I learned he lied and couldn’t reverse anything that he claimed he could.

With zero assistance from him, I set out to contact neurological specialists internationally.  When I spoke with a TN neurosurgeon from Israel, he answered the enigma that has bothered me for years.  I’m paraphrasing what he told me, but here’s what he said:

“The United States is cut happy. The U.S. has a medical business model and, as such, they allow surgeries that the rest of the world would never perform given the susceptibility for harm in such a snug, vulnerable brain area.”

WOW.  That explained the run-around I experienced. It also explained why, despite my considerable efforts, I couldn’t get any pain relief (forget justice) for the harmful outcome I suffered with the phantom pain of anesthesia dolorosa.

Then I spoke with several TN experts around the U.S. after sending them my MRI.  Each one told me that since the detrimental outcome of my surgery sensitized my central nervous system, I would no longer be considered “operable” by most TN surgeons anywhere ever. 

Again, WOW.  I really need someone to explain to me why it’s considered okay to perform a risky surgery on someone when there’s no way to treat any disastrous outcome of said surgery.  My experience has been to blame me (the patient) with a neat, tidy self-serving explanation.

I guess it all comes down to how desperate one is to get relief from the pain caused by the “suicide disease.”  That desperation is then exploited with a buyer beware consent document.  

I’ve since learned that consent born out of desperation (or a lie) becomes absolution for the surgeons performing the MVD procedure for TN.  That frees those performing the surgery from their oath to do no harm. 

Here’s the kicker: After having done considerable research, I asked my neurosurgeon if any bad outcome could be reversed later. He answered “yes” in his fervor to ready me for the surgery. So, I signed the consent agreement based on his lie. 

Would you take on doing something that you knew could make a patient’s situation even worse, if you knew beforehand that you couldn’t do anything to correct it if something bad happened?  And who would be responsible if the outcome was bad? You or the patient?  Another enigma.

I guess the neurosurgeon from Israel was right about the American medical business model promoting “cut happy” surgeries that generate significant profits for their operating entities.

Interestingly, I also learned from my situation that conditions like TN are considered so rare that they are often relegated to teaching hospitals to give surgical residents training opportunities.

Even worse, regarding justice in the state of Florida where I live, one cannot sue a surgeon working for a teaching hospital. Why? Because the state owns the teaching hospitals and one cannot sue teaching hospitals owned by the state. Now, there’s a neat, circular wad of unjust enigmas further saddling the patient.

The medical enigmas abound with TN, and I suspect that’s also true with other painful conditions. So, it’s no wonder Carol chose to write about a much needed, yet disappointing pain medication that was fast-tracked to address a huge void in pain management. 

Another medical enigma that I’ll never understand: How is this whole medical approach to supposedly treating pain any different from a fox guarding the hen house?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.