Cindy Ezell

TN Patient and former member of TNA Board of Directors

I first developed TN in 1982 at 28 years of age.  The reason for my first MVD was because I wanted to have a child and did not want to be pregnant and on Tegretol.  Without the medication I would be taking a chance of the pain becoming unbearable.

The research of the procedures for TN showed the MVD as having the best chance of the pain not coming back.  So I opted for the MVD in 1985.

The surgery was a success and gave me 7 years of relief.  During this time I was able to have a beautiful, healthy baby girl.

However, to my surprise the TN returned in 1992, and we repeated the MVD in 1994.  Return of TN was determined to be due to adhesions from the Teflon causing additional compression on the nerve.  One of the reasons some surgeons prefer Teflon is because it does not cause scarring very often.  Some surgeons prefer to use Ivalon, some muscle.  But in the medical field no treatment is 100%. 

Upon reaching the nerve through the scar tissue, the nerve was traumatized so much the feeling in my face was gone.  The feeling never returned.  This is the entire right side of my face.  I still had duller pain, though.  This was a hard pain, not sharp. When I would be tired it would be much worse, a boring pain above and in my eye area.

We tried 3 glycerol injections and the Gamma Knife.  Nothing worked.  I was about to give up hope. 

In December of 1993 I developed TN on the opposite (left) side. I was taking Dilantin for the right side already so the pain was subdued somewhat.  After I withdrew from the Dilantin after the 2nd MVD on the other side in May, it was full-blown.  I started back on Dilantin,  unfortunately, the pain outgrew the medication I was able to tolerate in a few months.  My white blood count started to drop, I could not stand the pain, and I did not want to under go another major procedure just  6months after the other one.  That is why I opted for the glycerol injection.

One glycerol injection has taken the pain away for almost 11 years, with no numbness at all.  I did develop chemical meningitis about 24 hours after the injection.  It caused a bad headache, fever and vomiting that lasted about 3 or 4 days.  Most people do not develop meningitis, but some people have a certain anatomy where the glycerol flows into the spinal fluid, more easily.  With the subsequent glycerol injections on the right side, meningitis did not occur.

Finally in 1997, my neurosurgeon cut the nerve as it exits the brain stem on the right side.  The pain faded away over the next several months.  It was not immediate like I thought it would be.  It has been wonderful.

I have had the same neurosurgeon for 20 years; he has done all my surgeries with the exception of the Gamma Knife. He has definitely been my best ally. He never gave up hope, even when I did. He always seemed to come up with something we could do to try and alleviate the pain. 

Many surgeons will not cut the nerve, but he knew we had tried everything and he was sure it was still TN, not Anesthesia Dolorosa.  He was right.  From everything I had heard and read, I thought it was AD, also.  I suppose the difference is that this was not a damaging procedure where the cell bodies are located, that would be in the ganglion.  The glycerol, RF and Balloon Compression are all aimed at that location.

This has taught me to never give up hope.  Sometimes the reason you can’t see the light at the end of the tunnel is because there is a bend in the road.