Martha Bauer, Patient

Her Personal Story

I have had a wonderful experience with botox similar to another patient who posted her story on the website.

My face pain was both shocking and burning and had become constant so that I was unable to speak comfortably or to chew. I am totally pain-free except for an occasional twinge although the pain tries to move up to my forehead now - still - that does not interfere with speech or eating and is not a headache. I still take 900 milligrams of trileptal but that is a tremendous reduction for me and I take Zonegran at bedtime. Another useful adjunct is a compounded mixture of Doxepine (5%) and Guaifenesin (10%) in a topical gel that I can spread on any area that feels sensitive reducing the trigger spots.

However, it is really the botox that does it. I have the injections every three months. I have had two treatments so far. Only a year ago I was taking Percocet every 6 hours and wearing Fentanyl 100 patches just to be able to work. The only anticonvulsant that worked for me, Trileptal, also caused me to have low sodium levels at a dangerous level which were hard to control.

I saw Dr. Martin Acquadro at the MGH pain clinic and Dr. Gary Borodic who is pioneering the use of botox for facial pain - I think I am patient #55 with TN treated by him. All I can say is it worked. After 6 years of different treatments, including two gamma knife treatments at Tufts New England and one hospitalization for pain, I am in pretty good shape.

Dr. Acquadro has made other good suggestions to me including application of cold to the back of my neck once or twice a day (never use heat - that adds to the inflammation of the nerve), attention to good posture, regular massages for shoulder relaxation. All of these have helped. He is the only doctor I have found in Boston who really understands facial pain and will take it seriously. It is kind of hard to find a neurologist who sees more than a few people with it. He makes this problem his focus and his treatment approach is very practical.

Like most TN sufferers, I would have done anything to make the pain stop. I am so grateful to find that what I have to do requires so little on my part - no brainstem surgery. After two sessions of gamma knife treatments which do carry risk of brain cancer later, and which had no lasting benefit, I am very grateful to have found a way to control my condition without being a zombie. I know that works for me may not work for everyone but it seems to me that others have the right to know that this option exists.

The bottom line of course is that I have my life back.

Updated 3-23-05