My Story

In the summer of 2005 I was living in McCall, Idaho. At that time I developed a sharp pain in my left ear. I assumed that it was an ear infection and decided that if it didn’t go away in a few days I would go to the clinic on my day off. It increased in severity over the next couple days and by Friday evening I noticed that I had lost taste and feeling on the left side of my tongue. After a painful and sleepless night I got up to go the clinic.

While brushing my teeth I noticed that I was drooling and my left eye stayed open, unable to blink. I quickly went to my vehicle and drove to the medical clinic a couple miles away. During that drive I noticed that my left arm refused to move, I couldn’t grip the steering wheel and it hung limp and useless in my lap. As I was trying to work the clutch, I notice that my left leg refused to move also. I made it to the clinic, fell out of the truck and drug myself to the front door of the clinic. I was unable stand or open the door but after repeatedly banging on the glass the receptionist noticed me laying there. By this time I was suffering from complete paralysis of the left side of my body and was only able to slur the words “Help me.” She instantly assumed that I was suffering a stroke and called emergency personnel.

I was transported to the McCall hospital where tests were done and it was determined that I had not suffered a stroke but had an extreme case of Bells Palsy. However, since McCall did not have the necessary equipment available I was transported two hours by ambulance to a hospital in Boise. The doctors there confirmed that it was not a stroke, but rather Ramsay Hunt Syndrome Type II and that I had the further complications of the virus spreading to other nerve bundles.

The severe complications of Ramsay Hunt syndrome are:

• Changes to the appearance of the face (disfigurement) from loss of movement

• Changes to taste

• Damage to the eye (corneal ulcers and infections)

• Nerves that grow back to the wrong structures (aberrant regeneration) -- for example, smiling causes my eye to close • Persistent pain (postherpetic neuralgia)

• Spasm of the face muscles or eyelids

Occasionally, the virus may spread to other nerves, or even to the brain and spinal cord, causing:

• Confusion

• Drowsiness (lethargy)

• Headaches

• Limb weakness

• Nerve pain

I suffer from almost every complication listed. After almost nine months of physical therapy I regained functionality of the muscles affected, but any extreme stress or physical exertion still aggravates these complications.

In the fall of 2007 I began teaching high school in St. Maries, Idaho. Sometime in October of that year I noticed a sharp, stabbing, electric like pain in what I thought was the last bottom molar on the right side of my jaw when I was eating. It was random and infrequent and I assumed that I had a cavity or crack in the tooth. As the pain became more frequent and sever I went to the dentist. After x-rays and an examination I was informed that there was nothing wrong with my teeth and that I should consult a neurologist.

The pain began to grow in frequency and severity and I notice that touching certain parts of my face and scalp would trigger it. Eating soon became nearly impossible without excruciating pain. I was then referred to a neurologist in Coeur d’Alene, Idaho. He confirmed the prior diagnosis of Ramsay Hunt syndrome and multiple places on my left side where the nerves had regenerated connections to the wrong muscle. He then diagnosed me with right sided glossopharyngeal neuralgia and prescribed Tegretol to help with the triggering and pain.

This would help for a while, but after two to three weeks would lose its effectiveness and my dosage/frequency would be increased. Neurontin and Phenytoin were tried with limited success, finally resulting in a combination of Tegretol and Neurontin being the main medication. It would work for a while but then I would have to increase the dosage every few weeks. But with increased dosages came increased problems with side effects and allergic reactions.

I suffered a multitude of side effects from Tegretol to one degree or another of the following:

Dizziness; drowsiness; dry mouth; nausea; unsteadiness; vomiting; Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry, or bloody stools; calf pain, swelling, or tenderness; change in the amount of urine produced; chest pain; confusion; dark urine; decreased coordination; fainting; fast, slow, or irregular heartbeat; fever, chills, or sore throat; hallucinations; joint pain; light-headedness; loss of appetite; new or worsening mental or mood changes (eg, aggression, agitation, anger, anxiety, depression, irritability, restlessness); pain, tenderness, or unusual swelling in the neck, groin, or under the arms; red or purple spots on your body; red, swollen, blistered, or peeling skin; severe or persistent dizziness or headache; severe or persistent nausea or vomiting; shortness of breath; speech problems; stomach pain; sudden, unusual weight gain; suicidal thoughts or actions; swelling of the hands, ankles, or feet; swollen lymph nodes; trouble sleeping; ulcers or sores in the mouth; uncontrolled muscle movements; unusual bruising or bleeding (eg, bleeding gums, nosebleeds); unusual tiredness or weakness; vision or eye problems; yellowing of the skin or eyes.

And, from the side effects of Neurontin to one degree or another of the following:

Clumsiness; constipation; diarrhea; dizziness; drowsiness; dry mouth; nausea; stomach upset; tiredness; vomiting; weight gain; Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); abnormal thoughts; back and forth eye movements; behavioral problems; change in school performance; chest pain; confusion; fainting; fast, slow, or irregular heartbeat; fever, chills, or sore throat; hyperactivity; loss of coordination; memory loss; new or worsening mental or mood changes (eg, depression, agitation, anxiety, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness, inability to sit still); new or worsening seizures; numbness of an arm or leg; one-sided weakness; severe or persistent headache or dizziness; shortness of breath; speech changes or trouble speaking; suicidal thoughts or actions; swelling of the hands, legs, or feet; tremor; trouble concentrating; twitching; vision changes (eg, double or blurred vision).

My ability to work and teach was becoming effected and I know that my Principal was becoming concerned, not only for me personally but also about my ability to perform my job effectively. I know I was working as hard as I could and to the best of my ability, but it was not up to the standard that either he or I wanted.

My dentist noticed an increase in my blood pressure and heart beat during a routine cleaning and advised me to see a physician. I was then prescribed medication for hypertension, which up to this point I had never had before. My condition continued to decline to the point that I was taking over 2400mg of Tegretol and 1200mg of Neurontin daily with minimal relief.

Then one day while teaching class I started having chest pains and shortness of breath. I was sent to the emergency room but released with no evidence of cardiac arrest. A cardiac stress test and a further angiogram showed no sign of damage or problem. The cardiologist came to the conclusion that it was caused by hypersensitivity to the high dosages of Tegretol and Neurontin.

Further discussion and examination of the rash and blisters I was experiencing lead him to believe it was an indication of an allergic reaction and possibly Stevens-Johnson syndrome.

My local pharmacist agreed and advised me to find out what other options were available as this dosage and duration was harmful to my health. I contacted my neurologist again but he was at a loss as to what to do, recommending staying on the medication and trying additional alternatives. He mentioned gamma knife radiosurgery and an appointment was made at Spokane Brain & Spine in Spokane, Washington.

On March 1, 2010 I went to see them and after viewing my MRI results, they felt that my case was more severe than they would be comfortable handling and referred me to Dr. Robert Rostomily at the University of Washington in Seattle, Washington.

I met with Dr. Rostomily around March 15, 2010. He was concerned about making sure there wasn’t an undiagnosed cause or that my prior experience of Ramsay Hunt syndrome wouldn’t be aggravated. Numerous medical tests were scheduled to be performed prior to surgery. I had subsequent visits on April 15, 2010 and April 26, 2010 for all these comprehensive tests. They ranged from base line audiology tests, EEG, EKG, MRI and Blood tests, to a lumbar puncture. They tested for causes by virus to stroke/cardiac events. Everything was negative and the surgery was scheduled for April 28, 2010.

I was informed of the risks and side effects of a craniotomy, vascular decompression and rhizotomy. I was given a 50/50 chance and accepted this without hesitation. I didn’t care what happened. One way or another I just wanted the pain to stop. This is when I was informed that this condition was called “suicide disease” because statistically 50% of patients who have this longer than 3 years commit suicide. I could relate. I had been dealing with this for almost 3 years by this time.

The surgery was an initial success. I was relatively pain free (except for what you would expect from a major surgery) for about three to four months… then the trigger started to come back. It was a thousand times worse.

As it progressed I was affected in different areas on my face and scalp. The pain was more sever and radiated in waves. Now just talking triggered the pain and spasms, causing me to drop to my knees in agony, tears running down my face, unable to close my mouth or move my face. All of this… in front of my students on a daily basis. The pain would be so severe that I would have to rush to the nearest garbage can in class to vomit. If I thought before that it had affected my ability to be an effective teacher I had underestimated it.

Within ten months I was back up to my original max dose of medications. The side effects and allergic reactions started immediately. I was worse off than I was before surgery and I had developed a ticking sound inside my head that pulsed in rhythm to my hear beat. (I later found out it was the high pressure pulse of blood through a compressed artery in my head). I reported this to Dr. Rostomily and he wanted me to return for surgery immediately. I had used up all of my accumulated sick leave and personal time so I asked to delay until spring break. To his credit, Dr. Rostomily recommended that I come sooner.

Initially this surgery was also a success, but I immediately noticed some of the side effects of the surgery.

The right side of my face is numb.

I have no sense of taste or smell.

I cannot chew on the right side of my mouth as I don’t know if I am chewing on food, my tongue or my cheek.

Swallowing is difficult as I found out in the ICU when I was given a pill to swallow. It caught in my throat as only the left side is working. A physical therapist was called in to teach me how to swallow, but I still have the permanent feeling of a finger sticking down my throat. I was diagnosed with dysphagia.

My voice has permanently changed, becoming hoarse sounding as a result and prolonged talking, singing or chewing results in muscle spasms in my throat triggering coughing and vomiting.

Severe tinnitus in both ears started after the surgery and has progressively gotten worse. My sleeping was effected. After I was released from the ICU I went 4 straight days and nights without sleeping. Lunesta and other sleeping medication was prescribed but had no effect. I currently average only 3 to 4 hours of sleep at night and feel fatigued during the day.

I always have a head ache. It isn’t a matter of it going away. It doesn’t. It is a matter of how severe it is. On a really bad day it is like the most severe migraine with sensitivity to light, sound, etc.

Occasionally I feel the trigger sensation in the corner of my mouth and lips. Now, instead of the painful, dancing feeling of electrical shock, it is more like worms crawling under the skin.

I have developed muscle spasms and ticks in various places throughout my body. I was then diagnosed with sporadic ataxia.

These are just some of the side effects related to just the surgery. They are permanent and will not go away. I was eventually released from the hospital and returned home. Within four weeks the triggering of both glossopharyngeal neuralgia and trigeminal neuralgia returned.

During summer vacation my condition progressively got worse. I became unable to do anything but the most basic and simple tasks. Any physical exertion caused nausea, vomiting, passing out and severe headaches. Just mopping my kitchen floor would put me down for days. I mowed the tiny patch of grass outside my house and felt sick. I walked inside but don’t remember anything until I opened my eyes and found myself laying on the floor. I had a lump on my head from bouncing off the coffee table when I passed out.

I had taken a summer job to help pay for all the medical bills, but as my condition got worse and worse my employer there advised me that she would like me to quit and focus on my health. Had I tried to stay I probably would have been fired.

I worried about how I was going to be able to go back to teaching at the beginning of the coming school year, but not wanting to undergo another surgery or return to the medications I was allergic to.

I was referred to a doctor (whom I will not mention for his safety, security and legal reasons) that offered a solution to try. It was medical cannabis (marijuana). For me it was an extremely difficult decision, ethically, legally and for religious reasons. It gave me a bit of relief without the side effects or allergic reactions of the prescription medication; but it is not a cure. And with that relief came other problems.

I was a high school teacher in the state of Idaho where there is no medical cannabis laws. I could be fired, lose my teaching certificate and face criminal prosecution. At a minimum, I would never be able to work in my chosen field of work or education again.

In full disclosure I notified my Principal and Superintendant. I quit taking it and returned to work but within weeks I was as sick as I had been before the second surgery.

I contacted Dr. Rostomily, informed him of my condition and what was going on and he immediately notified the school district that I should not be working and that I had a disabling condition. My Principal and Superintendant agreed. They were all such loving and caring people.

I qualified for early retirement based on my medical condition. I moved to Montana where medical cannabis is legal, met with a doctor and obtained a legal cannabis license. I filled out the necessary paperwork and applied for Social Security Disability. It was approved.

I then met with Dr. Rostomily for a check up on December 5, 2011. We discussed my condition and he suggested the possibility of another surgery but stated that he thought it would have little benefit and put me at more of a risk or make things even worse. He advised me to continue with what I was doing as long as I was feeling relief and that he would consult with other specialists regarding my condition. I am so grateful to the medical professionals and doctors – especially Dr. Rostomily. He and his staff have been amazing.

I have good days, bad days and REALLY BAD DAYS. But the bad days are occurring less frequently and good days more often. I would suggest anyone reading this to do a couple of things.

  • Find a good neurologist and neurosurgeon, someone you can work with and is open to all options.
  • Keep track of your symptoms, triggers and frequency on a calendar or diary. (I rate my days from 1 to 5 with 1 being a great day with minimal symptoms and triggers to a 5 being the absolute disabling agony.) This can help you determine what your triggers are, your well being and also provide informative documentation in case you need it.
  • Be open to alternative treatments, medicines and therapies. (I found that acupuncture, massage and chiropractic treatment can help.)

Lastly, find someone to talk to… whether it is a friend, partner, family, support group… or a website such as this one. Knowing you are not weird, crazy or alone and that there are others out there having the same experiences helps a lot.

I am so sorry for all that you went through and continue to manage. Thank you for sharing, I had heard only good things about MVD up until this. I've got some work ahead of me. I do keep a journal. Your day rating system will be a good addition.

I am new to this support group and addicted to my computer reading up on our members, soaking in the connectedness. Praying your good days rule over any other.

I just read your story and I'm so sorry for all that you've been through.

Your courage and perseverance are amazing. May God bless you and guide you on your path to healing.