My trigeminal neuralgia/pain journal
History of pain
Description of pain
The following account is taken from a document that I
always updated and gave to each new doctor that I saw for treatment of my
neuralgia. Because I had seen so many different doctors, and because it
was getting increasingly painful to recite the whole history, I summarized
it on paper. I could also then be sure that each doctor got pretty much
the same information. I also kept a couple of copies of my entire
(burgeoning) medical file to hand out on an "as-needed" basis.
One of the most annoying aspects of maintaining this practice was the need
to constantly request updates of my file from the various doctors I'd
seen. It did and still does infuriate me that many doctors charged me for
copies of my own file, yet never charged the requesting doctor for the
file, even though I could personally deliver the information faster than
waiting for the doctors' support staff to do it. I had particular problems
trying to get my MRI results from Stanford - they were loath to part with
the film. After spending about $1200.00 on that test, I felt that the
films were "mine".
History of pain
On March 19, 1991 I went to see Dr. Edward Spire of
Santa Cruz, CA after a recommendation from my dentist. I had been
experiencing a dull ache in the area of my lower right molar for about a
month, particularly when chewing, and my dentist suggested that it was
about time that my wisdom teeth came out. Dr. Spire told me that he would
remove my teeth under general anesthesia at Dominican Hospital because
they were deeply impacted under bone. I was 25 years old and agreed that
I'd been postponing the inevitable.
I sought a second opinion from Dr. Terry Slaughter of Watsonville, CA who disagreed with Dr. Spire and felt that the surgery could be safely performed in his office.
I avoided making any decisions and went on a visit to
see my parents for two weeks in Washington, D.C. My mother decided that I
should have the surgery during my stay with them, and I saw Dr. Charles
Tenen of Bethesda, MD on June 4, 1991. He agreed with Dr. Spire that the
surgery should be done in the hospital. I decided to go through with the
surgery with much trepidation because I suffer from panic attacks, and was
afraid of what it was like to be under general anesthesia. I almost laugh
at myself now for this fear -- I really had no idea what I was in for!
On June 11, 1991 I had four impacted wisdom teeth
removed at Suburban Hospital in Bethesda, MD under general anesthesia by
Dr. Charles Tenen. According to Dr. Tenen, the procedure took
approximately 45 minutes and went very well. I awoke and went home with
During the next few days I experienced little pain and
swelling. I took no more than a couple of Tylenol every few hours to
dispel any pain. According to friends who had had their teeth removed, I
had an extremely easy time recovering. I returned to Dr. Tenen's office on
June 17 to have the sutures removed. A few days later I returned to Santa
I do remember that I continued to have some soreness in
the place in the lower right side of my jaw, where my wisdom teeth had
been. This soreness seemed to get worse, and pain started to build after I
returned to Santa Cruz. At the time I thought that it must be part of the
healing process. The pain was pronounced by stabbing by the weekend of
6/29-6/30, I remember because I was at a party and had to stop speaking
several times because of the stabs of pain that occurred while eating.
The spasms first began on the Fourth of July weekend. I
remember putting a spoonful of cereal up to my mouth and dropping it in
the shock of excruciating pain, which emanated from the area where my
lower right wisdom tooth had been and radiated out along the gum line and
tongue. I telephoned Dr. Spire on July 5th. He prescribed Anaprox for the
pain, and did not quite believe the severity of it (my impression).
I came to his office to be seen on 7/8/91. He
discovered a minor infection at the site of the pain. When the amoxicillin
I was taking (from the initial surgery) did not improve the
pain/infection, and when the Anaprox clearly wasn't helping, Dr. Spire put
a drain in the wound, which seemed to ease the pain somewhat.
Seeing me in such pain, Dr. Spire diagnosed the problem
immediately as trigeminal neuralgia and suggested that I see a neurologist
. He told me that I needed to get on Tegretol immediately, and that if the
pain subsided I most likely had neuralgia.
On 7/19/91 I saw Dr. Chander Malhotra of Santa Cruz to consult about this. He advised that I increase the dosage of imipramine that I had been taking for panic attacks from 25mg to 50 mg a day to see if this improved the pain but it did not. The duration of the spasms improved somewhat, but I felt sharp stabs periodically during the day. I saw Dr. Malhotra again on 7/26/91 for a follow up visit. On 8/13/91 Dr. Malhotra gave me a prescription for Tegretol, which I did not take because of my reticence to take medication of any kind. He also noted that I did not have numbness of any kind associated with the pain, and that the pain was unilateral.
I returned to Dr. Spire's office on 9/9/91 in severe
pain, having a spasm occur as I bent down in the waiting room to pick up a
pen, and literally rolled in pain on his waiting room floor, which must
have been bad PR for the rest of his new patients who stared at me in
horror. I remember that the only way that I could communicate with him was
by moving my index finger up and down for "yes" and side to side
for "no". I couldn't even cry, as that made the pain far worse.
Dr. Spire felt certain that I had trigeminal neuralgia and told me that it
was a neurological and not a dental problem, and to take the Tegretol. I
also got the name of yet another oral surgeon in order to make sure that
he did not feel I had any remnant of infection that might cause the pain.
(I saw Dr. Yellich within the next few weeks but don't remember the exact
I began taking the Tegretol that day, and when I phoned
Dr. Malhotra's office I told him that the pain was beginning to subside.
By the time I saw Dr. Malhotra on 9/27/91 the pain had almost completely
subsided, and I was taking 3 200 mg Tegretol a day. On 10/25/91 Dr.
Malhotra told me to increase the dose to 4 Tegretol a day but I was
reticent about this. By the middle of November I had raised the dose to 4
per day. Side effects experienced were mostly drowsiness and constipation.
I was almost pain free during the fall. When I began to
have occasional pains around the end of November, I wondered if one could
get tolerant to Tegretol. I was feeling frustrated by not knowing the
exact problem/cause of the pain, and made an appointment to be evaluated
at the Stanford Neurology Department on 12/5/91.
At that time I saw Dr. Faizel, who gave me an extensive evaluation to rule out brain tumor and Multiple Sclerosis. The chair of the department, Dr. Wasserstein, also evaluated me for a few minutes at the end of the appointment. The general conclusion was "atypical trigeminal neuralgia" that did not have any relation to the extraction of the wisdom teeth six months before. An MRI was suggested to definitively rule out MS and a tumor, although I was told that there was slim chance that I had either disease, and that an MRI was not mandatory. If the pain became significant, Baclofen was recommended, as was Dilantin.
On 12/18/91 I went to the Stanford MRI center and completed and MRI with contrast which turned out to be completely normal. The emotional experience of the MRI was something I'll not soon forget, however. I had no idea that I could experience such claustrophobia. The nurses had to pull me out of the machine between scans because I was freaking out so much. Yet in retrospect I'm glad I had the MRI, because that ruled out MS and paved the way for my eventual surgery.
I continued on a largely pain-free basis until about
the middle of February, 1992. When I saw Dr. Malhotra on 2/11/92, he
suggested that the generic carbamazepine may account for the poorer
analgesic effect. The pain was pretty severe, and in desperation I had
three acupuncture sessions at the TCM Clinic in Santa Cruz around 2/13/92.
These did not help at all. I began to take the name brand Tegretol and
During this time I was undergoing stresses at my job as a legal secretary, having been told that I would be fired should I not comply with certain duties that I found to be demeaning and sexist. Since October Ist had been looking unsuccessfully for another job and since mid-November I had been waiting for a promised government contract job to become available. At the end of February, certain that the new job was to begin in a couple of weeks, I quit my job. I lost my health insurance but the stress and associated pain of working for that attorney was worth the risk of medical bills. My parents were generous enough to pick up the tab from then on, but not without a price as I slowly began to find out.
When the pain began to increase again, I raised the dose of Tegretol to 5 times a day. Unfortunately, I followed the advice of my mother and a neurologist friend of hers, and cut down on the dose to 4 a day in April, 1992. At this time I had been unemployed for almost two months, though my job would finally begin May 1. The pain returned within the week, and I did not have a remission again until after surgery.
I began to work full time on May 1, 1992 at a job that
was far less stressful.. However, I was not accustomed to working full
time and having to commute daily from Santa Cruz to Monterey. The job also
did not offer any health insurance. I pleaded with the contractor to at
least put me on their group plan and I'd pay the premiums myself, but
their policy just wouldn't allow it.
By 6/1/92 the pain was back and getting worse every day. The spasms became so frequent and so severe that I had difficulty communicating with my coworkers and I began to lose weight. Sometimes I had only 5 spasms in a day, ranging from 1 to 5 minutes. Other days I had up to 20 spasms, the longest of which was 20 minutes. These bouts with pain differed from previous ones in several ways. I had a trigger point that existed on the right lower corner/lip of my mouth. Also, the pain was not only along the lower jaw, but sometimes centered/extended along the upper jaw and upper right side of the roof of my mouth. Severe spasms also extended all the way up to the top of my right ear. I tried to take 6 Tegretol but found that nausea and drunkenness resulted, although the pain level improved. I could not, however, function at my job with those side effects, and reverted back to taking 5 pills a day.
Around the 1st of June, I saw my general practitioner, Dr. Peter Nash, who gave me a Zung test for depression. I scored as having severe depression, so he prescribed 20mg of Prozac per day, which I took until just before my surgery with marked improvement in attitude, insomnia, etc.
I began to get desperate. Dr. Malhotra simply said that he could not help me anymore. I thought this was a completely unacceptable response. I got a name from my mother who recommended that I see Dr. Ronald Young at the University of California at Irvine (now on the board of the Trigeminal Neuralgia Association, and in charge of his own medical clinic in Seatlle where he performs gamma ray surgery). While waiting for an appointment, I saw Dr. Michael Bronshvag, who was referred to me by my spouse who is a workers compensation paralegal. Dr. Bronshvag saw me free of charge as he was interested in my case. He hypothesized that I might have some vascular abnormality ("loopy blood vessels") normally associated with trigeminal neuralgia, but agreed that my case was "atypical". At the end of June, I changed to a part-time work schedule.
On 7/2/92 I saw Dr. Young who also felt that I had an atypical form of trigeminal neuralgia. My pain was getting somewhat better but I was still feeling pretty desperate. I started crying in desperation, but Dr. Young basically wanted me to wait before undergoing any kind of MVD surgery -- at least 2 years from the onset of pain because of my youth in relation to the usual age at which trigeminal neuralgia is found. I'd driven 375 miles and paid over $300 out of pocket to basically get no answers at all. I did get to go to Disneyland, however.
Dr. Young recommended that I see Dr. Steven
Graff-Radford, a dental facial pain specialist at Cedars-Sinai Anesthesia
Pain Center, who is also well known in the TN field.
I saw Dr. Graff-Radford on 7/27/92. At this point my pain spasms had almost completely subsided, but I did often speak with a slur to avoid the constant sharp pricks of pain. He did a thorough evaluation, but he seemed rather patronizing and got several facts wrong while dictating his impressions. He also noted that there were no active trigger points, although I had had trigger points only the month before.
He recommended a benzocaine spray which turned out not to be very effective.
During August 1992 I had less pain and was almost able to eat normally. This continued through September. I also began to see Dr. S. Allan Dorosin as my primary neurologist on 8/17/92 because I was dissatisfied with the treatment I was receiving from Dr. Malhotra. Dr. Dorosin also agreed with the other doctors in a diagnosis of atypical trigeminal neuralgia.
In mid-September I discovered that the contract constituting my employment was not renewed and that I would be unemployed October 1. Within a couple of hours of this news I developed some pain, but I didn't have any significant change in my pain for the next couple of weeks. I was also aware that I was to be hired under a different contract within the next two months.
Once I was unemployed, however, I did start to get a few spasms per week. I also went to see Dr. Frank Grimaldi of UCSF Dental Department to get a dental evaluation as I had not seen a dentist in over a year. He discovered 6 cavities on the left side of my mouth and was able to get in an oral exam despite a few spasms on my part. He then recommended fillings done in two appointments, in which I would be sedated with Valium and possibly anesthetized with Demerol. He felt that there was some possibility that the neuralgia was caused by the wisdom tooth removal, but felt that in all likelihood I would have felt the pain immediately after surgery and the pain would have subsided over time. (My case is reversed.) I left intending to make an appointment for the first set of fillings when my spasms subsided again.
I also began attending a pain support group in Santa Cruz, which emphasized speakers from both traditional and alternative health professions. From this group I met Dr. Martin of the Santa Cruz Medical Clinic, who volunteered to help me contact the National Institutes of Health to see if they had any studies going on regarding trigeminal neuralgia/facial pain.
I also began to see an osteopath, Dr. Lay for cranial therapy. I had about 8 sessions in which he noticed that a section of my skull had been pushed out of line, probably as a result of the stress of the wisdom tooth removal, and that that misalignment could have cause some kind of pressure on the trigeminal nerve. He realigned the skull section although it kept drifting. Finally, I discontinued treatment as it did not seem to have any result in effecting the pain. I am very grateful, however, to both Dr. Martin and Dr. Lay because they either did not charge me for treatment, or treated me at a greatly reduced cost.
Then, from the 10/29 to 11/5/92 I went to visit my family in Washington, D.C. The visit was pleasant, and there was little if no pain. While I was there I met Larry and his wife Terri and gained additional support.
When I returned home and got busy making up for lost time with my part-time ceramics work, I began to experience at least one spasm a day. I didn't pay much heed to these spasms, thinking that I could hold out till my December neurologists' appointment, and that I couldn't afford to see a doctor sooner. But the spasms got worse very quickly, and within a week or so I was unable to eat normally or speak, and was subsisting on oatmeal. This bout of pain was by far the worst.
Towards the middle of November I called Dr. Dorosin, who prescribed Baclofen at 10mg per day up to 6 tablets per day. But the pills weren't working fast enough, so he recommended going up to 3 tablets per day and ending with as many as 10 Baclofen per day. He also recommended increasing the Tegretol and told me that if I took them further than 2.5 hrs apart I wouldn't be as likely to feel the nausea. I took all the medication -- going up to 7 Tegretol per day (one every 3 hrs and 1 in the middle of the night) and went up to 6 Baclofen per day. The pain was unaffected for days. In my desperation I went to a Doctors on Duty and asked for narcotics. I was offered a shot of Demerol, but fearing loss of control, I opted for Vicoden. The Vicoden had no effect except to make me extremely high. I spoke to Dr. Miller (Dr Dorosin's doctor on call) who told me that narcotics rarely help trigeminal neuralgia, and that I was taking too much other medication to add narcotics to the list.
When I saw Dr. Dorosin a few days later, he told me that there weren't any other routes of treatment that he could take with me. He would not put me on Dilantin since I was already drunk from the medication that I was on. He recommended that I see Dr. Charles Wilson of the University of California at San Francisco (also on the TNA board) and wrote a letter to his office. He also told me that he strongly discouraged my having the MVD surgery as the causes of my pain were not clearly identifiable. He also felt that the pain was not stemming from psychological causes, although it seemed clear that stress exacerbated it. In short, he was completely mystified by my condition.
Dr. Wilson's office recommended Dr. Nicholas Barbaro, also at UCSF. While waiting for the appointment I continued to take the medication and hoped for the best. In late November I began to see an acupuncturist on a regular basis: sometimes every other day. I admit that I forget the accupuncturist's name - but she was extremely kind and generously saw me for free because I was such an "unusual" case. After the first two treatments I noticed marked improvement. However, those treatments coincided with an increased daily dosage of Tegretol. My acupuncturist suggested reducing the Tegretol dosage, and immediately the spasms returned. I had no further success with accupuncture, although I do admit that I was never able to stomach the herbs.
Throughout the entire duration of my disease, my parents expressed skepticism and disbelief. Because I had been a rebellious adolescent, and because I had made choices in my life that my parents did not approve of, my parents believed that I was suffering from some kind of psychologic hysteria. You yourselves may have heard the same comments being directed at you: "Of course the pain is real. But isn't it possible that you are subconsiously disturbed or upset and that is the cause of your pain?" As you all know too well, NOTHING PSYCHOLOGICAL can produce the level of pain that TN does. I have heard that it is the worst pain known to humankind - and I often wondered if amputation without anesthesia could be a likely equivalent. If someone cuts your arm off, and you scream in pain - your response and your pain are not likely to be labelled "psychological".
One of the problems that my parents had with this disease and with me is that their good neurologist friend simply didn't believe that it was possible that a person as young as I could have neuralgia. She had heard many stories from my mother about my troublesome childhood and youth, and I suspect that she empathized with them heartily. In short, she was not in any kind of objective position to evaluate me.
Yet at the beginning of December, my mother's neurologist friend urged me to come to her institute in Germany for study and evaluation. The doctor would study me and provide psychotherapy by an American psychiatrist with the stipulation that I sever all contact with the United States for six months. This is another possible option for me which I seriously considered at first, but which I now feel was unethical and would have bee disruptive to my life. I'm almost positive that such an avenue would have ended in suicide. This doctor, however, continued to urge me to take up her offer, and, at my mother's prompting, she also phoned Dr. Dorosin to learn more about my case and pressure her cause. Dr. Dorosin was not impressed by my family's behavior, I am happy to say, and strongly supported whatever decision I made for my treatment.
At mid-December my job was reinstated under a different company. Within two weeks after I started working again the pain gradually improved. I also began to reduce the dose of Baclofen so that I am currently taking 3-4 pills a day and 6-7 Tegretol (sometimes I forget the early morning dose). My state ranged from being almost completely pain-free and having no trigger points to having soreness along the gum line and sensitivity around the trigger point. I notice that I'd have more pain when I missed a Tegretol dose than a Baclofen, which lead me to wonder if the Baclofen was really being effective at all.
My parents also met with a neighbor who worked that the National Institutes of Health, Dr. Robert D. Gerwin, also a neurologist, who studied my medical records and suggested the possibility that I have infected "bony cavities" in my jaw that were causing the pain (I think this is known as "jaw bone cavitation" in the medical literature). At this time my parents have discovered that NIH no longer has a protocol for facial pain studies, so there is little hope of treatment occurring there.He has recommended that I see Dr. Joel Conzolman at Walter Reed Hospital, and Dr. Lawrence Funt, a local dentist/orthodontist, who specializes in facial muscular disorders.
My parents also contacted a Dr. Pluta, a neurologist at NIH, who is contacted Dr. Janetta of Pittsburgh for advice about my case.
In January 1993 I saw Dr. Nicholas Barbaro, who reviewed my file, MRI, and read this account. He felt confident that I was qualified for MVD surgery, and also mentioned that he performed the thermocoagulation radiofrequency procedure. He strongly tried to dissuade me of choosing the latter procedure because of my age, and because of the risk that I would have permanent sensation loss in some areas of the right side of my face. I still felt quesy about major surgery, and we left it that I was going to think about things, and that I was going to try to find a solution for payment through Medicruz, a Santa Cruz equivalent of MediCal.
The next day I saw an oral surgeon who worked with Dr.
Kaban, at UCSF, who also felt that I had a clear-cut case of trigeminal
neuralgia, and that the pulling of the wisdom tooth had nothing to do with
my pain. He took extensive tests of the sensation in the right half of my
face to have a baseline indicator of sensation should I opt for the
thermocoagulation radiofrequency procedure.
At this time I qualified for a special insurance plan mandated by the state for people who had trouble getting health insurance: the California Major Risk Medical Insurance Program. To any Californians without medical insurance who are reading this: you may qualify for this plan! If you have been denied health coverage in writing, or you do not have COBRA from your previous employer, or your coverage has been cancelled because of a medical diagnosis, you can apply to be under this plan. There is a waiting list, but once you are accepted you may choose from 5 providers (I chose Blue Cross, but there were HMO's available as well) and your premiums are not going to be astronomical. Also - the insurer cannot cancel you for any reason. There is a 6 month waiting period for pre-existing conditions - but that's better than the 24 months most insurer' s have you wait. This insurance made it possible for me to have brain surgery and get on with my life. I can't say enough about it - just as I can't say enough about how angry I am with the health insurance situation in America today.
Somewhere about this time I was told by someone in my group about the Planetree Consumer Medical Library in San Jose. I went there and found tons of information about trigeminal neuralgia, and most importantly, the address of the Trigeminal Neuralgia Association. I got in contact with Claire Patterson, and before long I received a phone call from Larry Kinsey, a former airline pilot living in the Washington D.C. area who had suffered for years with the disease.
Larry was incredibly supportive of my situation. He had had the MVD surgery (performed by Dr. Kobrine of Washington, D.C.) and was completely cured and filled me in on the details of his surgery. For the first time, I began to consider brain surgery. I was terrified of the surgery, not so much because it involved the brain stem -- oh, no. I was phobic about vomiting after surgery, and felt that vomiting was worse than death. I still feel this way - it's a part of my panic disorder. But everyone around me thought I was crazy to put up with the pain because of my phobia of vomiting.
My condition improved until I rarely had out and out spasms -- just daily jabs. Dr. Dorosin recommended that I see Dr. Howard Fields at the Pain Center at UCSF but I decided to wait until July before attempting any further medical treatment (barring drugs) because my new insurance plan would begin coverage for pre-existing conditions only after July 1.
At about this time, my mother's neurologist friend,
while visiting the United States, had several in-depth conversations
warning me not to opt for the surgery. She truly felt that I really did
not have trigeminal neuralgia and that I should also get off as many of
the drugs as possible. She again felt that it would be best for me to
spend 3-6 months under her care at a medical facility in Germany for
Dr. Dorosin also spoke with her, and felt that reducing
the amount/types of drugs I was on was a good idea. I tapered off the
Baclofen completely by February, and between Feb. and my surgery the
following October I got off the Prozac and Imipramine, and got on
Amitriptalyne instead. I then took "only" 7 200 mg. tablets of
Tegretol (round the clock) and was supposed to take up to 100 mg. of
Amitriptalyne daily, but I was so groggy that I found driving dangerous as
I increased the dose of the latter.
I went back to Washington at the end of April for a
vacation, and to march with my spouse in the third big Gay and Lesbian
rights march. I was curious if I would have a relapse as I had the the end
of my last vacation, but so far I only noticed slightly more intense jabs
- especially if I missed a dose of Tegretol.
While on vacation, I did discover a new trigger point
-- the skin/hair above my right ear! This was the strangest trigger point
yet! I could brush my teeth without pain, but to brush my hair on that
side was unbearable. The more Tegretol I take, the less sensitive the
I also saw Dr. Lawrence Funt, who ran into my father
while both were walking to work. He saw me April 31 and did an oral exam
and felt that I indeed had a neuralgia, but it was not classic. He felt
that it was extremely rare for me to have both mandibular and maxillary
branches affected (which I found odd, since many articles I've read state
that such a condition is common). He was surprised that I felt no pain on
the flesh of my cheek -- that it was all internal along the gum line. I
had not realized until now that many TN patients feel pain on the skin of
their faces. He also felt that the tooth-pulling may have brought the
neuralgia on. He did not rule out surgery, but felt that I needed to get
as much information about all options as possible as I was so atypical. He
recommended Dr. Fenn as a local Santa Cruz dentist to take care of my
particular dental needs. (NOTE: Dr. Fenn no longer resides in Santa Cruz -
he has returned to his native Australia.)
I also got to meet with Larry Kinsey and his wife Terri
and got more support and feedback from them.
While I was in D.C., I also had the opportunity to meet
and/or speak with other people who had TN and had their symptoms relieved
by the MVD surgery, which I found extremely supportive and helpful. One
person told me that a Novocaine injection in the cheek was an effective
temporary block, and had this test done to ascertain which nerves were
affected by the pain in preparation for MVD surgery. I continued to remain
in contact with these people and the Trigeminal Neuralgia Association.
Upon returning to Santa Cruz, I had a general check-up
by Dr. Dorosin, and saw Dr. Fenn for dental care. Dr. Fenn was amazingly
helpful. He had access to several fee-for service online databases and
printed out about 50 pages worth of medical information for me on the
disease. He also put me in touch with a former patient of his who now
lived in the Oakland area, who had had both the radiofrequency
thermocoagulation and MVD done by Dr. Barbaro. This fellow was only 6
years older than I was, and also developed pain after his wisdom teeth
were pulled. I immediately called him and got his side of the story -
mainly I felt better knowing someone who had been "fixed" by Dr.
Dr. Barbaro's office called me back to tell me that he
did not feel that a Novocaine test would prove helpful in my case, and
that when seeking dental care, a Novocaine block for my entire mouth
should suffice long enough to get the work done, although I might feel
some spasms as the anesthetic wears off.
I felt pretty well in terms of the pain - I could
always handle constant sharp stabs, better than all out attacks. However,
I began noticing that I was very forgetfull and found this very
disturbing. I was functioning with less efficiency at work, and discovered
that even three days a week at work was tiring. I have often got more that
11 hours of sleep at night, and found that I was still tired/could go on
sleeping. At this time I discovered that Tegretol could cause short-term
Around mid-August of 1993 my pain level was been low or
non-existent. Most of the time I "only" took between 5 or 6
Tegretol a day, 60 mg. of amytriptaline, and an occasional Seldane for
allergies. I felt less tired with the decrease in Tegretol. I returned to
see Dr. Barbaro at the end of July to set an appointment up for surgery
and to ask him some final questions about his qualifications and the
nature of the procedure. He was extremely amiable and willing to answer my
three page single-spaced list of questions. In case these questions help
other's in formulating their questions (and so that you will see that no
question is too "dumb" to ask!) I'm including the questions
after this account.
The appointment was set for 9/27/93. An appointment
for a second opinion was set for 8/20 with Dr. Gail Magid of Santa Cruz,
also a neurosurgeon.
I had been able to get all necessary dental work done
by Dr. Fenn, who also printed abstracts from CompuServe regarding cases of
trigeminal neuralgia and tooth extraction. I got the research bug and went
up to UCSF's medical library to look up the articles and do some final
I also saw a chiropractor in Los Gatos because of some
headaches (unrelated). Like the other "alternative"
practitioners, he was also interested in the cause of my neuralgia, and
tried an unconventional treatment that involved pressure points on the rib
just above my right kidney. He was certain that kidney disfunction is
involved, and also suspected a hairline fracture in my left jaw that might
cause stress on the right jaw and thus pain. I didn't quite go along with
this hypothesis, but the treatment was free and I had nothing to lose.
X-rays taken of my spine and jaw (for chiropractic
purposes) showed that my esophagus and trachea are deviating to the right.
My family doctor, Peter Nash, ordered a barium swallow which I took 8/13
and a lump on my thyroid gland was discovered. I had an ultrasound and
biopsy of the lump by Dr. Jefferey Williams, and fortunately the lump was
benign and the MVD surgery could proceed. At one point I almost hoped for
any diagnosis that would postpone the MVD, because I was starting to get
really scared of the "brain" involvement in the surgery.
types of pain I felt during major episodes:
7/91-9/91 (Initial episodes)
I felt the spasms emanating from the area where my lower right wisdom
tooth had been. It was as if a sharp, piercing dagger had sliced through
the gum. Then I felt waves of pain going along the gum/jawline that "prickled",
like electricity. During a severe spasm I felt shooting pains across my
lower lip. Also would have burning sensation in right half of tongue.
There was no identifiable trigger point at this time, but pain was
triggered by eating or brushing teeth. Cold or hot liquids also triggered
pain. Chewing was not a problem, it was moving the tongue which triggered
the pain. I think if there was any kind of trigger it had to do with
anything (such as a spoon) touching my lower lip. Spasms only occurred
when triggered by eating, etc. and I never had more than 3 spasms per day.
None were longer than 5 minutes duration. There was no pain in between
2/92-4/92 Had "breakthrough"
pain from growing tolerance to Tegretol (my hypothesis). Went up to 5
pills a day and pain began to ease. Also went through stressful period of
6/92 First really severe episode of
spasms. Noticed trigger point which was lower right lip. Pain was
different -- still originating from the lower right wisdom tooth area, but
at times began where the upper right wisdom tooth had been and extending
half way across the roof of my mouth. Sometimes only the mandibular region
would have spasms, sometimes only the maxillary. But during a severe
spasm, both branches of the nerve would be inflamed. I could have up to 20
spasms a day (estimating) and the longest one lasted 15 minutes. Eating
and speaking triggered the pain, but chewing was still not a problem.
However, in between spasms I felt soreness and pricks of pain, which
causes me to slur my words and be tentative about which consonants I used,
11/92-12/92 Second really severe
episode of spasms. This time both mandibular and maxillary branches were
affected from the outset, and the pain sometimes extended all the way up
to my ear. Furthermore I had pain that originated under my tongue (under
my chin?). I stopped counting how many spasms I had per day. The longest
one lasted almost an hour. That spasm caused me to start searching for my
spouse's gun because I really couldn't take the pain anymore - but my
spouse got ahold of my plan and got the weapon out of the house. It was
not necessarily one spasm but was composed of waves of spasms that kept
battering my jaw no matter how quiet, still or calm I tried to be. If the
spasm was receding and I swallowed, the spasm came back again in full
force. Wind also triggered spasms.
When the episode began to improve, I noticed that while
I did not have outright spasms, I had a lot of soreness in my gums, so
much so that I could not chew at all without excruciating stabs of pain.
(So I lived on oatmeal, etc for at least a month). Speaking was also
extremely painful - avoiding certain consonants did not help this time
because the pain came from underneath my tongue and I got sharp stabs when
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