Ann Barrett Graves

TN, MyoFacial Pain Syndrome and Botox

From a Patient Perspective

Progression of Disease and Early History

I’ve been sickly my whole life. Strep Throat, Chronic Sinusitis and Eustachian Tube disorder mostly. My first surgery at the age of 18 was to correct a badly deviated septum, but the surgeon only corrected the first inch or so as he also removed my adenoids and tonsils. My tonsils have grown back. I am now forty, married and have one young child, a girl. I am missing all the teeth on the left upper palate due to pain. I’ve had ten or eleven surgeries and a bone graft since I was 18. Sometimes I suffered through multiple surgeries in one year. My current ENT says it looks as though literally a bomb went off inside the left side of my face. The surgeries have left the left side of my face with little bone support for my nose and there is a possibility that a surgical error left me with a hole from my front left maxillary sinus into the brain cavity so that my Dura is maybe exposed to my sinus. They tell me I am lucky not to have developed a brain leak. I now suffer from either MyoFacial Pain Disorder and probably Trigeminal Neuralgia or both. I have no tear ducts due to surgical errors on multiple surgeons. At the least, my trigeminal nerve has been irritated on all three branches on the left side of my face.

I first realized the problem was getting worse than the typical sinus related infection when in 2003 after the birth of my daughter my upper jaw began to hurt. At first I had only a ghost of pain, but enough to wake me up at night. I would think, "There can’t possibly be something wrong with all of my teeth at the same time could there?" I thought about the expense and tried to put it off which worked because for about a year or so the left side of my face went completely numb to the midline of my face. Then came the extreme pain and blinding headaches constantly along with the numbness. Sounds like an oxymoron, but let me assure you it is not.

I went from Dentist to Dentist who could see nothing wrong in their area of expertise. I also went from ENT to ENT who said the same. At last I appealed to my endodontist (root canal dentist). He agreed to root canal the teeth. All 5 of them were dead. This however did not rid me of the trigeminal pain. So no one would restore the teeth with a crown. The teeth eventually became infected or too brittle and they all had to be removed. I still had the pain and had spent upwards of $30,000 dollars. And, I had a train wreck in my mouth. I was 38 years old.

There was one ENT who was willing to do some exploratory surgery. She found a pocket of infection (Klebsiella Pneumonia – a gram negative bacterial pneumonia) just above my front tooth between the tooth area but below the sinus on the left side. Eventually the front tooth also had to be removed. I was pain free for three weeks.

Then came the bone graft. The infected area and the dead front tooth had lead to rapid bone loss. I had no bone between the nose base, my left Maxillary sinus and my gums. The pain became unbearable. Finally despite resisting for a year or more I went to see a Pain Management Doctor. I did not want to be on narcotics, but that was the only thing that would even make a dent in the pain and still despite high doses of oxycodone, I was still extremely uncomfortable and in pain. The doctor was afraid that sinus or other infection and I traveled from ENT to ENT hospital to hospital until one ENT said maybe the infection is in the bone and put me on IV Levaquin 1G per day for a month. To this day, I still have GI issues because of the high doses of antibiotics. The pain was unbearable. I could only lie in bed. Apparently the bone graft was growing up into my sinuses. We are hoping that situation will correct itself.

During this whole doctor merry go round, I had doctors prescribing me psychiatric medicines like amitryptaline (Elavil), Prozac, Neurontin (gabapentin), Geodon, Paxil, Cymbalta and others. None of which worked for the pain. Anything but an SSRI, made me anxious and irritable and helped me pack on the weight.

I went from doctor to doctor which entailed about three more surgeries. My left Frontal Sinus was completely closed in. I had no way to equalize pressure changes. Pressure changes affected me so badly. Every time I took to bed, there was a drastic change in the weather. Living near Washington DC in the MidAtlantic, this happens everyday or every other day depending on the season.

New Hope/Nearing A Solution

The pain management doctor kept me on the oxycodone for almost two years. I had met another ENT who did one more surgery and put me on a regimen of special sinus rinse and also pulmicort twice daily. This regimen has worked very well and has rid me of most of the swelling and edema present in my sinuses which set up a perfect breading ground for infections. So I am doing better just due to not having an infection.

What’s more in July, after being assured I was infection free. The pain management doctor actually began treating me with injections…We had already tried the typical lidocaine, steroid or marcaine injections did not work. In fact, they only irritated the trigeminal to a new level of pain.

After the assurance that my sinuses were cleaned out and actually looking better… the pain management suggested Botox Injections to manage the pain. I was a little leary. A previous ENT had given me Botox A (for which I paid $500 out of pocket for) and it paralyzed the left side of my face so badly my whole face drooped and my eyelid. My face stayed like that for about 4-5 months while I saw double through my left eye which wouldn’t shut all the way. And still had the pain and a severe eye strain headache to boot.

Anyway I allowed the pain management/anesthesiologist to try a limited area…with the Botox B. It took about two week of felling off kilter, but after that I had 6 weeks of remaining pain free. Days where I wasn’t driven to the oxycodone bottle. I could not have been more pleased.

I did some reading up on the treatment protocol that he used. He injected me from my back on my shoulder blade up to the top of my shoulder then along my neck and up the back of my head. This also relieved any pain around the ears and face including the middle trigeminal branch. And I have to tell you with a diagnoses of cervical dystonia and others, Insurance covered the Botox. The treatment protocol he used was the one used for MyoFacial Pain Syndrome.

I just went for a retreatment after 3 months and the doctor injected those areas as before but added from the back of my head by my ear up to my front hairline and temple area. As of this writing I am about one week or so to feeling great relief. I am hoping to get several months of pain relief this time. The injections hurt like heck though.

There are a couple of recommendations I would make to someone following in my footsteps. One is I wouldn’t recommend root canalling all your teeth. My teeth really weren’t the full source of my problem and it will be a 30-50 thousand dollar expense to get repaired. The second recommendation is don’t go to someone who is practicing Botox Therapy for mainly cosmetic reasons to fix an issue as complex as this. It won’t be covered by insurance. I would look for evidence of infection which show up as dark spots on dental x-rays. I had actually pointed out the spot where the klebsiella was found to several dentists, who either weren't very good or had ego problems. If you are like me, you have probably picked up a lot of medical vernacular and can read an x-ray for certain things. Some doctors do not appreciate this. Also take your dental x-rays to an ENT or a specialty dentist like an endodontist. They would be more likely to pick up the infection. I would definitely recommend seeing a pain management/anesthesiologist to help you with the botox. Untrained Botox professionals can cause alot of pain and damage. I would also like to state for the record that I am not a doctor and have no formal training, only patient experience.

Myofacial Pain Syndrome and Trigeminal Neuralgia?

Lastly I have a question to ponder. What comes first the trigeminal neuralgia or the Myofacial Pain Syndrome? To me it is kind of like the old chicken and egg question. In my opinion TNA and MPS are related. Is it the nerves kicking off the muscles that contribute to the pain, or are the muscles misbehaving and irritating the nerves? Right now, I don’t know that there is any answer for sure… but I can tell you that Botox at least, for now, is helping me beat the cycle and start getting some of my life back!

Updated 10-19-07