Scott Johnson, Patient

His Personal Story

I’m a 54 year old male from the Chicago area. I started getting the sharp dental pains so typical of TN in 1997. I went to my dentist and after he looked under some old fillings and such he told me that there didn’t appear to be anything wrong with my teeth.

The fact that he was able to determine that it was more likely a neurological problem than a dental one has endeared him to me for as long as he is in practice. I found out later that most TN patients get multiple root canals and/or tooth extractions before their dentists finally give up and send them to a neurologist. I know I was begging him to pull something, anything out of my mouth in order to stop the pain. Thank goodness he refused and sent me somewhere where I was properly diagnosed.

This occurred in 1998. The neurologist started me on a drug (I forget what) which after a month I was able to determine had no effect on the pain. He then started me on Tegretol. From 1999 until the late Fall of 2002 I was able to exist (certainly not pain free however) by ever increasing dosages of Tegretol.

During the autumn of 2002 my wife started noticing the appearance of large red welts appearing on my back, and soon on other parts of my body. They were unsightly, but not painful in and of themselves. My neurologist told me however that this was a sign of an allergic reaction to the Tegretol, and that the next inevitable allergic symptoms would probably be the swelling and closure of my airways. I had the choice of breathing, or one of the surgical alternatives which were considered by some as a last resort, so I really had no choice at all.

My doctor had tried Neurontin with absolutely no effect. I was taking massive doses of Tegretol at the time and had to go ‘cold turkey’.

I elected to go with an MVD (Micro-vascular decompression) rather than the gamma knife or other ‘destructive’ therapies. I scheduled the MVD surgery with a well-regarded neurosurgeon at top notch hospital in the Chicago suburbs. The neurosurgeon had only performed the MVD operation about 50 times or so he claimed. His specialty was in pediatric neurosurgery however. I had the original MVD operation in late November of 2002.

When the doctor came in to see me the next day he showed me the color photos of the Teflon he had wrapped around my cranial nerve. Unfortunately, while some of the dynamics of the pain had changed slightly, I experienced virtually no relief from the operation. I spent a week in the hospital recovering. Talk about depression!

About a month later in January 2003, during an office visit with the original surgeon’s partner, it was suggested that I look into the non-invasive  gamma knife operation. His partner had previously worked at the Mayo clinic and proffered to give me an immediate reference to there neurosurgical unit. Needless to say I took him up on it. I was told at Mayo’s by who I found out later was the #2 MVD surgeon in the country (in terms of experience anyway) that my best option for relief was a gamma knife operation, due to the fact that the success rate for second MVD operations was not very good, and that the meninges or internal coverings of the brain behaved like ‘wet cardboard’ once they had been cut through the first time making a second operation to the same area in the brain much more dangerous.

Considering all of this, I elected for the gamma knife. I had the operation at the Mayo clinic in January of 2003. The results were not spectacular however. While the intensity of the pain may have been lessened slightly, it was still unbearable. 

Finally, in April 2003 I went back to the surgeon at Mayo’s and asked him for the second MVD. He warned me again of the likelihood of no relief and severe complications from a second MVD, but I couldn’t go on the way it was. The second MVD was performed at Mayo’s in April, and when the doctor came into the Neurosurgical ICU to assess me the next day he informed me that the original MVD had been performed on the wrong cranial nerve. The original pediatric neurosurgeon had wrapped a Teflon cover on my 8th cranial nerve (acoustic) rather than the 5th (trigeminal). In addition, he had gone into my skull at the wrong place so there were no problems with having to go through the meninges at the same location. I guess he knew what he was talking about because I haven’t had a single TN pain whatsoever in the last four years.

Other than an occasional slight facial numbness which is a result of the unnecessary gamma knife. (something I was told to expect at the time), I have been symptom free ever since. In addition, I was released from their neuro ICU only 24 hours after my operation. I was able to convince the surgeon I was up to it when he asked me to walk with a nurse down the hall and back to assess my condition, and I quite literally skipped down the hall. I may hold the record at their institution for the rapidity of my release from the neuro ICU.  

Mayo’s called me a couple of weeks ago for a long term follow-up and I reported to them that I was 100% cured. Ironically, I found out that my eventual total cure (and lack of permanent damages) has (according to lawyers anyway) has made a malpractice suit against the original surgeon uncertain of enough return to pay for the expert testimony needed. However living pain-free these four years makes the success of any litigation truly irrelevant.

I guess the moral to my story is:   Seek out the best from the start, and don’t ever give up.

Updated 5-30-06