Charleen DiNino, TN Patient

Her Personal Story

In the spring of 1990, I felt a slight twinge above my right lip. I told my dentist about it, and he treated me for TMJ. When the twinge became a little stronger, I felt that it was a tooth just below the twinge. I just knew that I needed a root canal. After being sent to a special dentist who x-rayed and said that I didn't need a root canal, I was sent to a dentist to be checked for a tumor in my mouth. That checked out alright.

Then the stronger twinge turned into the "shock" kind of pain, and it kept getting worse. I went back to the dentist who said that I didn't need a root canal. I insisted that something was wrong with that tooth because I had such horrific pain and it was getting worse. He did do a root canal at my insistence; I was back with a couple weeks complaining that the pain was still there. He said to wait a couple more weeks as sometimes it takes that long. The shock pain kept getting worse and more frequent. The dentist then said that I did not have a problem with my tooth, and he said that I needed to see a neurologist.

I had also told my internal medicine dr. about this twinge and subsequent pain, and he said that it was the tooth. I think that this is why I was so insistent on it being a tooth problem.

This diagnosis that it was not a dental problem and the suggestion to see a neurologist took a period of four long years. When I saw the neurologist, she immediately suspected that I had trigeminal neuralgia; however, she made an appt. for me to go to the hospital the next morning at 6 a.m. for an MRI.

By the next time I heard from the neurologist (about three weeks), she called my home and told me that I had a brain tumor about the size of a golf ball. She had an appt. for me with a neurosurgeon at 9 a.m. the next morning. He explained to me that I had a meninginoma (sp) tumor on my trigeminal nerve, and he felt 95% that it was benign -- I hope that I've explained this correctly. He gave me two weeks to schedule my surgery, and I did.

I had the surgery May 9, 1994; and by the first week of August, I was back to school accepting a new assignment (one that I was very excited for the challenge). I went back with a patch on my eye (I had double vision from the surgery), eventually was fitted for prisms in my glasses, and I thought that the pain in my eye, behind and beside by eye were from allergies. I was going for my allergy shots, to the opthmalogist for the pain (nothing he could do), and it was two years before anyone told me that the pain was from damage to the trigeminal nerve from my surgery. I was put on many anti-seizure meds which caused severe side effects or didn't help at all. Finally, Neurontin agreed with me and I was on it until this May 2004 (from 1996). By 2004, the Neurontin was not helping at all.

The right side of my face is partially numb. My forehead is the most numb, and it gets less numb as you go down my face.

The pain that I have is the constant, burning, stabbing, searing pain along the cheekbone under my right eye, the temple area by my right eye, and around my right ear. Sometimes it even goes into my scalp and hurts to wear my glasses.

I suffer from dry-eye syndrone, and my cornea has no sensation so I have to be very careful to not get eye infections. I use drops and ointment all day and at night if I wake up.

In the fall of 2002, I saw on GMA and read in our newspaper about Botox being used to treat migraine headaches. At my November appt. with the neurologist, I asked him if he felt that Botox might be something that could help me; he did so I went for my first Botox injections in December 2002. I felt from the beginning that it did give me some relief. It didn't take away all the pain, but I did feel about 50% less of the hard pain for about two months. The treatments can only be given every three months. With each treatment until the March Botox treatment, I had felt some relief. At least the pain wasn't so severe that I was knocked off my feet for a day or two. I've had a June and Sept. Botox treatment since, and I've had relief once again with each of them.

In August I had been off the Neurontin for three months so I decided to give it another try, and I feel it is helping a little, also. For about three months, I have been giving myself B12 injections weekly. I don't know for sure if it has helped the pain, but I do know that my energy level is way up there. Before, I would often feel a need to take a nap in the afternoon. I rarely take a nap since beginning the B12 injections.

Something that I have learned that helps me so very much is just keeping myself very busy and around other people where I'm forced to smile, talk, and laugh. I go to the gym three times a week, go to physical therapy twice a week for the neck pain after surgery that wasn't taken care of ten years ago, attend two seminars at the local university, travel with my husband to conferences from his work, spend a lot of time with the seven grandchildren and doing activities with them, and just being with my very supportive family and friends.

Yes, after all this, I do still have this nagging constant pain; and yes, sometimes (like last Saturday) I had to give in and go to bed with an ice pack), but all in all, I'm coping as well as I know how. Keeping busy and around pain-free people who make me laugh helps to keep me from thinking about my pain. I am fortunate that it doesn't make my face hurt worse to talk, eat, or laugh. Sometimes if I'm having a really painful day, I do have to cancel plans; but I often find that when I push myself to go ahead with the activity that the pain decreases over time.

I plan to try the UCC treatments when I've finished with the physical therapy for my neck pain. So many TN patients have responded to the UCC that I feel that it's something that I want very much to try. Who knows, UCC might just be the answer to curing the rest of my pain.

Someone had sent me Dr. Roger Hinson's e-mail address, and I wrote to him about my symptoms. Within a couple days, he responded and he gave two theories that he had that he felt might be causing my pain. He felt that there is a chance that the UCC treatments would help me. I was so impressed that he responded so quickly as I know how busy he must be. So many people have spoken so highly of him. What a special person he must be!