I had never heard of Trigeminal Neuralgia when I was finally diagnosed. Below is a brief history of my bout with Trigeminal Neuralgia which will be of interest and hopefully helpful to other TN sufferers? (1)
My first attack of TN was in August of 1990. I was in my sixties and had never heard of Trigeminal Neuralgia. I was to learn this is not unusual. Many patients suffer for years, going from one doctor to another before being diagnosed with TN
I am writing a sketch of my experience because I wish someone had given me information early on. It might have helped in some of the decisions I made for treatment.
At first, the acute “electric shock” like pain seemed localized in my teeth. I went to a Dentist. No problem there although I did have an unnecessary root canal (the dentist was not 100% sure it was not that bottom left jaw tooth.) After the root canal and the continued unbearable pain, my teeth was ruled out as a problem.
Finally a doctor, after finding no brain tumor or other problems that could cause such horrible pain...diagnosed it as Trigeminal Neuralgia. The first Neurologist I saw at the time seemed to have had little or no experience with TN.
Six years after my first attack, on March 6, 1996, Dr Susie Tindall at Emory Univ. Hospital in Atlanta did brain surgery...micro vascular decompression. (in lay persons understanding ...it was to place a pad to separate the offending trigeminal nerve from the artery pulsating against it.) Dr. Tindall had told me it was “successful in 80 percent of patients.
After the surgery Dr. Tindall told my family that it "did not look like what she expected". My understanding is ... she did not see an artery pulsating against a nerve but she put a pad in anyway? The surgery was not successful so the horrible pain started up again after a brief time. One of the frustrations about TN is the intermittent pain that comes and goes without apparent cause or reason.
After moving to Rome GA, in 1998, my pain kept increasing. My son-in-law Gregg Lewis, a writer, had just written a book with Dr. Benjamin Carson. Gregg knew that Carson, the director of pediatric neurosurgery at Johns Hopkins also specialized in TN treatments.
On June 10, 1999, I went to Johns Hopkins Medical Center in Baltimore MD for Dr Carson to do a procedure ...labeled "Percutaneous trigeminal Rhizotomy with Glycerin Injection".
My pain continued. Later I learned from Patricia Sumerford of Big Canoe, GA about a Support Group she was starting for Trigeminal sufferers. (a friend, Ann Long of Grantville GA, at a meeting happened to overhear Patricia mention TN so gave her my email address ) Patricia was most helpful and gave me information about a Research project taking place at Life University in Marietta under the direction of Dr. Roger Hinson a Chiropractic doctor.
I got in touch with Dr. Hinson and participated in the project for nearly a year and was pleased with my progress. While I was getting Chiropractic adjustments from Dr. Hinson, I gradually reduced the amount of the Neurontin I was taking and got off medication completely for awhile and was practically pain free.
After the Research, when I stopped making the long trip down to Marietta, the breathtaking electric shock like pain came back and became increasingly severe. I tried a Chiropractic doctor here in Rome but continued in severe pain. The indescribable pain become more and more severe.
Dr. Hinson is in private practice now in College Park, Georgia. I am told that medical insurance now will now cover some Chiropractic treatments. I continued with Neurologist (Dr. Bill Naguazewski) here in Rome who kept increasing neurontin medication (a medicine commonly used in Epilepsy patients) and they even put a pain patch on me one day when I was at the doctor's office in such horrible pain I could not speak. I got off the narcotic pain patch after a few weeks believing the treatment was worse than the disease.
Medication (even pain patches) does not help this pain anyway and I certainly did not want to deal with addictive drugs.
The doctors did CAT scans which showed the pad that Dr. Tindall put in my brain in the 1996 surgery at Emory had "calcified." The Neurosurgeons here in Rome (Coosa Medical) were helpless. They said they had never seen anything like it.
We finally sent the scans to a Neurosurgeon in Nashville and then on to Johns Hopkins hospital in Baltimore, Both these doctors had seen the calcification before and both suggested another rhizotomy that would deaden the trigeminal nerve. My family did a great deal of research and finally convinced me to go back to Dr. Carson at Johns Hopkins…reasoned Carson would have a special interest in me because of the previous failed procedure.
October 30, 2001. I was back at Johns Hopkins. Dr. Benjamin Carson did a “Rhizotomy with a modified form of Radiofrequency”. One of the side effects is that I have a great deal of numbness (especially the left nostril) and still have some head and facial pain but no recurrence of the unbearable trigeminal pain since the procedure on Oct 30, 2001. This is not considered a permanent solution (but is expected to last for years) and is still working well for me over 10 years later.
I suppose I would do it again because the pain had become so unbearable. I could not eat (mostly liquids) and could not talk without extreme pain and it made carrying on daily activities difficult.
In order to send this information to a friend who is dealing with some facial pain, I am publishing this article again today (May 23, 2011) . I am still free of the excruciating Trigeminal Neuralgia now nearly 10 years after the surgery by Dr. Ben Carson at Johns Hopkins.