Persistence Pays

This month I’d like to continue with the topic of facial pain—trigeminal neuralgia, a disorder that I have. I wrote about this in the August issue, and here’s some more information.

I felt a bit awkward at first writing about my own health problems, but I knew in my heart that sharing my experiences might help others. How comforting it has been to hear that many folks have called and e-mailed trigeminal neuralgia state coordinators and the national association for help and more information. This is what it’s all about— sharing knowledge and referrals, reassuring others that they aren’t alone, and giving folks hope. No one should ever have to suffer this horrible pain.

Since the first column I’ve had some good news that’s definitely worth sharing. At first I saw two different neurologists who prescribed anticonvulsant medications to help slow down the trigeminal nerve’s ability to “fire” and cause pain. This plan worked fine for a few months, but then the pain returned with even more vengeance. The doctors added some other medications plus painkillers. Nothing was working, and I became a zombie, losing energy and stamina. During all this I suffered Bell’s palsy (facial paralysis) on the left side where the pain was and that caused its own set of problems—dry eye and throat due to the inability to produce tears or saliva.

Weighing Options
Things were looking mighty bleak until we had a family meeting to discuss my options. It was obvious all these medications were not working, and I still had a couple of weeks on the calendar before getting in to see a well-respected neurosurgeon in Denver. We were hoping I’d be a candidate for a non-invasive gamma knife procedure that literally zaps the nerve with beams of cobalt radiation.

Meanwhile we did some research and also heard back from the trigeminal neuralgia support group coordinator in Colorado Springs who suggested a specialist in pain management. We followed up on this, and I’m happy to report good news.

We found an interventional pain management physician, an anesthesiologist, who does indeed specialize in the treatment of facial pain, along with back, neck and complex regional pain syndromes. I was able to get an appointment the day we called, and immediately felt we were on the right track.

New Diagnosis
After taking a thorough history and looking at my MRI results, which showed no tumors or abnormalities, he gave me a more specific diagnosis —sphenopalatine ganglion neuralgia. In a nutshell, it’s an inflammation of the sphenopalatine nerve (that’s associated with the trigeminal nerve along the side and front of the face). He’s the only doctor who’s addressed the connection with the Bell’s palsy, explaining it’s all related. Instead of prescribing more drugs, his plan was to begin weaning me off the anticonvulsants and pain medications. He also explained where the nerve is, illustrating how it actually travels along the face into the nasal cavity.

He began by giving me a dose of lidocaine (Xylocaine, a local anesthesia gel with a syringe) in my nose—to be continued four times daily for a while, followed by a nerve block injection directly into the trigger zone the following week. Time will tell how long the process will work— many nerve blocks last months at a time. He’ll keep close tabs of how I’m doing, and I’ll follow up with another interventional pain management doctor this winter in Arizona.

The results have been very encouraging. It takes time to rid the body of all these medications, so I slowly began to regain my energy and old self as we decreased the amount of pills each day. It’s very important to do this gradually under a doctor’s supervision, or your body can suffer all sorts of serious problems. Never attempt to stop a powerful drug on your own.

Just taking the lidocaine gel dulled the pain right away. Hopefully the nerve block will continue working, and I’ll be pain free. I’ll keep you posted.

Keep Looking
The moral of this story is to explore all the options you can. For some, taking medications works well and helps relieve the pain. For me, it wasn’t working, and in fact, it was hindering my health to the point my family thought they were losing me. Fortunately we found this very caring doctor, and I feel confident his treatment will work for me.

You can learn more about finding a doctor in your area by contacting the American Society of Interventional Pain Physicians (ASIPP), 2831 Lone Oak Road, Paducah, KY 42003. Phone (270) 554-9412, see the Web site at www.asipp.org or send an e-mail to asipp@asipp.org.

Two key ingredients are important when one is faced with a situation like this—hope and information. Be persistent every step along the way, gathering all the material and resources you can about your own health issues, and when things seem dark and aren’t going your way, remember these comforting words of encouragement:

Sometimes our fate resembles a fruit tree in winter.

Who would think that those branches would turn green again and blossom?

But we hope it, we know it.

So, if you or someone you know is suffering in pain, keep trying until you find a doctor who can help. Evaluate what’s going on, keep notes, and hopefully things will get better.

Here’s to your health!