Wednesday, May 19, 2010

Trigeminal Neuralgia

Trigeminal Neuralgia?
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 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.

1.There are many TN sufferers out there. I have just finished reading the Winter 2007 TNALERT, published three times a year by (Trigeminal Neuralgia Association). It came in the mail today (January 8, 2008).


Carol said...

I was always amazed at how you still managed to be a full time pastor and do so many other things despite all the pain.

I gave you an award. Here's the link to find out about it:

Jane said...

Thanks for sharing your story, Aunt Ruth. I knew you had pain with the TN but I never knew how bad it was. I do no know how you managed your life during that time. I am so glad the last procedure has brought you relief.

Ruth said...

Thanks Carol, I sure learned much from all the pain.
More importantly, I have you to thank, my precious daughter, for taking time off from work to drive me to Baltimore, stay with me for the surgery and then back home.
I am hoping some TN patients will read the post and find some help in their decision making.

Ruth said...

Thanks Jane, I am catching up with reading my favorite blogs today...and yours by my favorite neice, is near the top of my list!!!! We REALLY get to know one another by reading BLOGS? Right?

janice said...

People who are currently suffering from this horrible problem will find this via google and it will be so helpful.

In fact, I think you need to go back and elaborate on some of the things -- as much of other things to add that you can think of -- that are left out. This is extremely interesting -- especially to those of us who stood helplessly by and couldn't do anything to help.

Jean said...

Dotty Me, I left a comment on the wrong post, all the way back to 'You Don't Have to Shovel Sunshine.'

You can look at my blog to see why I do things like that. I'd like to link your blog if it's okay. Thanks.

Freddie Sirmans said...

Just browsing the internet. Your blog is very, very interesting. great read.

Anonymous said...

Ruth--I also have TN and have had two surgeries; and am a patient of Dr. Carson. I am currently working on a "toolkit" idea for TN patients (written for TN patients by a TN patient) and would so appreciate hearing more about your story because I know it will benefit others! It is in the sharing that we all get through this! I live in pain every single day, but do really well despite it all because of my faith, and the many friends brought into my life! Let me know if I can contact you! Judi C at

Cathy said...

Ruth, my mother who is 72 years old also suffers from TN. I sit helplessly as she shrieks in pain. She has been on Tegretol and Gabapentin for years with no relief.Surgery is not an option because she is uninsured and cannot get medicaid because she is a resident and not a citizen.
I'm glad you have some relief.
God Bless
Cathy U

Jane said...

I suffer from Trigeminal neuralgia for so long (at least it seems that way). I think most people around us don't even imagine how bad the pain is. I remember times I couldn't do anything because of it.

Anonymous said...

I was diagnosed with bilatral TGN in 2002 and today am pain free. My history of therapy has included medications, gamma knife (3x), and rhizotomy (3x). The rhizotomies were all done by Dr Carson at Johns Hopkins and each has worked for about 3-5 years. Dr Carson has retired and I need another TGN surgeon. Suggestions?


Julie said...

Dr. Mark Linskey did my MVD for ATN, GN, and GPN. He's one of the top for trigeminal neuralgia. He's in Orange, Ca

Julie said...

Dr. Mark Linskey did my MVD for ATN, GN, and GPN. He's one of the top for trigeminal neuralgia. He's in Orange, Ca

Anne-Lise Botting said...

What was different about the treatments you received while at Life University, participating in their project, which helped? Thank you so much for your information. I am seeking alternatives before surgery...

MatthewKatherine Bazemore said...

Do you have information on any TN support groups in the Atlanta or North Georgia area? It would be helpful to speak in person to others going through this. I was recently diagnosed as well. Thanks for sharing!

MatthewKatherine Bazemore said...

Do you have information on any TN support groups in the Atlanta or North Georgia area? It would be helpful to speak in person to others going through this. I was recently diagnosed as well. Thanks for sharing!