Choosing Brain Surgery Over Chronic Pain

A month before having microvascular decompression (MVD), I was in despair.  It was the only emotion I could muster after suffering a year from the chronic and shocking pain of trigeminal neuralgia (TN).

I had lived 30 years with Spinal Muscular Atrophy, and for the last 19 years of my life, I had been confined to a wheelchair.  Despite SMA and its limitations, I never allowed the disease to defeat me.  I went to a top university and law school, lived independently, worked as an attorney, and moved half way across the world to fulfill my Zionistic dream of living in Israel.

Everything was shattered, however, when I was diagnosed last year with TN.  For a year, I spent most of my life in bed with debilitating pain.  What time I wasn’t in bed with pain, I was too dizzy, nauseous and drugged to work and live independently.   I suffered horrible side effects from the TN drugs, including double vision, trace vision, dizziness, nausea, bladder and kidney infections, constipation, weight gain, and general weakness.  The chronic pain made me depressed, and to make things worse, I no longer had a job or income.   TN had ruined my life.

My only chance of getting my life back was to have an operation that would eliminate the pain of TN without the assistance of anticonvulsants.  My neurologist referred me to a neurosurgeon at Ichilov, Dr. Nevo Margalit, but I had to wait months to see him.

Finally, the day of my appointment, April 28, had come.  I was in pain and nauseous from the pain and drugs, but I forced myself out of bed and to his office.   I prepared myself for the good chance that Margalit would tell me that the TN was inoperable and there was nothing he could do.  I didn’t want to build up hope, because I knew I couldn’t pick up the shattered pieces while pushing through the pain.  It would be too much to bear.

So, I “walked” from my apartment on Ben Yehuda to his office at Ichilov, thinking of what I would do when Margalit would say there was nothing he could do.  Would I yell at him and say, “Find something!!!”?  Would I cry?  Would I feel nothing?  In the end, I decided I would probably just get another pain attack, rush home to bed, take medicine and carry on with this horror of a life…for how much longer I could take, I wasn’t sure.

I arrived to his office and noticed the other patients waiting to see him.  They were all post-op patients.  They had shaven heads or wore some kind of head covering to conceal their large scars and baldheads.  I wondered if I would need to shave my head for this hypothetical surgery.  The idea of being bald didn’t scare me though.   I would gladly shave my entire head of long hair to be rid of this nightmare.  I’d donate it to cancer kids and make something good of this horrible disease.

After an hour’s wait, the doctor’s secretary called me in.  The moment had finally come, but I still felt nothing.

I gave Margalit my MRI without even looking at him.  I hadn’t looked at a doctor in months.  I’d seen one neurologist after another, each one prescribing more drugs than the last.  (At first, I would respond to the drugs and get a glimpse of a pain-free life, but then the TN would return.)  I couldn’t look at and put my trust in another doctor.  So, I didn’t notice him.  He was a just a breathing human at the other side of the desk, looking at my brain scans on his computer.

“I see a hint of something here,” he said, as he pointed to the screen with his elongated fingers.  My heart stopped.  I shifted my eyes upwards and noticed him for the first time.  His height almost matched the length of his perfectly long surgeon’s hands.  He had kind eyes and a warm and friendly demeanor, unusual for a surgeon, much less a neurosurgeon.  So, I made eye contact, and in that moment, I felt myself reach out to him and beg him to save me of this horrifying disease.

“Hint?  What does that mean?,” I asked.  He explained that he saw in my MRI what could be a blood vessel pressing against my right trigeminal nerve.  He needed a more precise MRI to be sure, but if he was right, it could be the reason for my pain and operable through MVD.

On my walk home, I still had pain, but I saw things I hadn’t seen on the way there.  It’s strange how hope can change your perspective on life.  Colors were more vibrant.  The trees were blooming with exquisite purple and Chinese red flowers.  Lilac flowers dusted the sidewalks with their petals.  The sun was shining brightly and painted the earth with its rays of light and ornate shadows.   I didn’t just want to survive.  I wanted to live.

—————————————————————————————————————————————

Two weeks later, I brought the more precise MRI scans to Margalit.  As he sat in front of the computer looking at the scans, my eyes filled with tears.  What if he was wrong?   What if there is no blood vessel?  The more time that passed, the more a lump developed in my throat.

“There it is,” he said.  “Right there.”  I burst into tears.  Concerned and handing me a tissue, he asked, “Why are you crying?  Are you happy or sad?”

“Happy,” I said.  “This could all be over.”

We discussed the operation and its risks.  The operation entailed opening my skull, entering the nerve center of the brain, and placing Teflon pads between the trigeminal nerve and the blood vessel compressing it.  The Teflon pads would serve as insulation, if you will, to the trigeminal nerve, relieving the pain in 80-90% of patients.

Of course, there were risks.  There was a chance I would have partial to total hearing loss in my right ear, that I would lose sensation in the right side of my face or even be paralyzed on the right side of my face, and that I could stroke out or die.  All the risks were minimal (3% and less), and, in my opinion, worth taking.  None were as bad as TN.  In truth, I would’ve agreed to the surgery if the risk of death were 50%.

So, I said, “When can you do it?  How about next week?  Actually, do you have a drill here?  Let’s do it now.”  He smiled, and we scheduled the surgery for two weeks away.  To think, in two weeks, I may not have TN.

With a smile, albeit painful to make, I excitedly told my friends and family, “I’m having brain surgery!”  I was choosing brain surgery over chronic pain…hope over desperation.

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3 thoughts on “Choosing Brain Surgery Over Chronic Pain

  1. I can’t do anything but cry reading through your last three posts… love you dear girl, with all my heart, love you… you are so brave, so beautiful…as always, I am in awe.

  2. Maybe I am looking in the wrong place, but I wondered how your surgery went and if it helped. I have a rare spinal condition and I have researched many and read that MA III is very common and the least severe form of MA. That is one thing to be thankful for, although when you are in severe pain constantly it’s hard to be thankful for very much. .

    1. Hi bmh, I’m slightly confused. When you ask about MA III are you referring to SMA III? I don’t know what MA is. The surgery was terribly hard for me to go through and from which to recover. Actually, it ended up being unsuccessful and my new neurosurgeon in the states says I need to have the surgery again, but I declined for now because it was so hard for me. I instead chose radiation.

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