Sharing experiences and information is one of the key benefits of membership in the TNAC. We learn from each other. Reading about others helps us to feel that we are not alone with this disorder. We would love to hear your story and to share it with others. Please send your story to editor@tnac.org If you can, include how long you have had TN, what treatments you have tried and what effects you have noticed from each treatment.
The stories
| Medication | Rhizotomy | MVD | Gamma Knife | Alternative |
| Bill Gary B Valerie Jan Patty Helen | Bill Valerie Ray and Betty | Gary B Valerie Gary Jan Patty Helen | Valerie Ray and Betty |
Name: Bill Alderman
Location: Niagara-On-The-Lake, Ont.
e-mail: walderma@becon.org
Date: November, 2004
I had an MRI back in 87 hoping for an answer to a number of nervous system problems that had taken place over past number of years. At that time I was officially diagnosed with Multiple Sclerosis.
It was about 90 when I first experienced the facial pain. My G.P. prescribed Tegretol (200 mg). The intensity of the pain continued to increase. At some point I was referred to a neurologist. Each visit with the neurologist seemed to only result in directions to increase the med dosage. At some point Baclofen was added to the daily meds but I experienced no relief. I saw a new neurologist who immediately prescribed Solumed & Prednisone. Finally some relief - albeit brief, it was relief.
For the next 2 years I had almost constant pain. I tried acupuncture, herbal remedies - Name it & Im sure I tried it. Finally in April 98 I was referred to Dr. Gary Ferguson at the London Health Science Centre. He performed a Glycerol Rhizotomy. The first attempt did not work but the 2nd one did. The treatment left me totally PAIN FREE/MEDICATION FREE till September, 1999.
I was aware that this is not a permanent solution. However, I didnt expect the TN pain to come back with such a vengeance. Before I knew it I was up to 1200 mg of Tegretol. I had a 3rd rhizotomy in December 1999.
As I write this almost five years later, I FEEL FANTASTIC and TOTALLY PAIN FREE. Im quite aware that this procedure is not for everyone nor is it a permanent fix but it WORKED FOR ME. There will be no hesitation arranging a repeat visit with Dr. Ferguson at the first sign of pain.
No question, IM AN ADVOCATE OF THE GLYCEROL RHIZOTOMY!
Name: GARY BAUER,
Location: CALGARY, ALBERTA
Date: November 2004
At the age of 43 years & having had a very
healthy & pain free existence until one July day
in 1988. I was taking a shower when a sharp pain
in the right side of my forehead literally put
me to my knees. We were living in Whitehorse at
the time & I went to a local GP who did not
diagnose the cause. Following this the attacks
moved to my front teeth so I visited a dentist
in Edmonton who did X-rays which indicated no
teeth related problems. Fortunately the dentist
had encountered a similar case four years before
in which the individual was later diagnosed with
TN. So in the fall of 1988 I was introduced to
Tegretol which because a major component in my
life for the next 10 years.
During this period the intensity & frequency of
attacks varied significantly with remissions
more common in winter months & painful periods
frequently during the summer season. There were
a few remissions over the years with one lasting
several months but inevitably the attacks would
return & I had to respond by increasing drug
dosages. Eventually the pain entered the lower
jaw area which sometimes made it near impossible
to eat for short periods of time until increased
Tegretol levels brought the condition under
control. All three branches of the trigeminal
nerve had triggered attacks in my case but the
worst & most enduring was the lower branch.
When we relocated from Edmonton to Calgary in
1996 the attacks were steadily getting worse &
our family doctor referred me to a neurologist
who had a CAT scan done which fortunately
confirmed there were no tumors. I inquired about
possible treatments but the neurologist thought
it better to rely on the drugs instead of more
intrusive alternatives. Eventually the side
effects of prolonged use of Tegretol became
apparent with occasional dizzy spells and some
tiredness. I was fortunate in that my family
doctor closely tracked my condition with regular
medicals & blood work. By the summer of 1998 I
was taking up to 2400 mgs of Tegretol per day to
control frequent & severe attacks. My blood
count dropped significantly from the high drug
intake & it was at this point we decided that
something else must be done. A switch to
Neurontin resulted in less adverse side effects
than Tegretol but the regular attacks persisted.
I read extensively on the various treatments
with particular interest in the microvascular
decompression (MVD) procedure which held hope
for a permanent fix & asked my family doctor to
identify those skilled in the procedure in the
U.S. & Canada. The search identified Dr.
Kaufmann who had trained & specialized in such
treatments in the U.S. & had returned to Canada
& the Foothills Hospital in Calgary. Considering
the relatively few cases of TN in the population
it was indeed fortunate that such a proficient
specialist resided here. An appointment with Dr.
Kaufmann followed by a MRI that clearly showed a
blood vessel impinging on the trigeminal nerve &
the confidence gained from discussions with Dr.
Kaufmann confirmed that the MVD procedure was
for me.
I entered the Foothills hospital on Thursday,
October 30, 1998 & following a four hour
procedure was on the mend & returned home on
Tuesday, November 4th. I was off work for the
next 10 days & returned to part days & was back
doing overseas travel in December. I gradually
went off the Neurontin over a four week period
following the operation. I have not had any TN
pain since the morning of October 30th.
I am extremely grateful to the skill &
dedication of Dr. Kaufmann who has provided me a
much appreciated six plus years of normal life
after 10 years of discomfort & pain which only
those who have experienced it truly understand.
P.S.: I would strongly recommend that anyone
seeking further knowledge on TN obtain the book
Striking Back as it has a wealth of information
that can be a valuable aid in all aspects of TN
& its treatments.
Name: Gary Bannister
Date: January 2000 - updates November 2004
In October '99, I reached the age of 60. During this watershed
life experience, I also entered the hospital for a microvascular
decompression procedure. The tic is gone! Except for some
numbness, an occasional sensation during the process of nerve
regeneration, and a slight hearing impairment, the start of Y2K
has special significance to me.
The following is a historical account of my tic saga:
1980's
In the early 80's I began to experience electric shock-like
stabs when I brushed my forehead on the right side. The attacks
lasted for a couple of weeks. I attributed them to a sinus
condition, seasonal changes in atmospheric pressure and/or the
hay fever season. A heat lamp and withdrawal from people and
activity appeared to help. By the end of the decade the
affliction 'spread' to the cheek/ nose area of my face. I
followed the advice from friends and gave up drinking red wine,
continued with heat, sinus tablets and hay fever remedies. The
attacks lasted for up to 2 weeks, but when they were over, I
quickly forgot about them.
1990's
As the duration and severity of the episodes increased, I sought
medical advice. A medical doctor administered acupuncture. It
felt fine during the treatment, but the shocks soon returned.
Finally, the diagnosis was Trigeminal Neuralgia. Tegretol was
prescribed. In the beginning the dosage was 1 milligram twice a
day to combat attacks that now lasted for about a month. In the
end I was taking 2 milligrams up to 6 times a day. The tic had
moved to my lower jaw. I could not eat, talk or sleep without
constantly increasing the dosage. The last, and I hope final,
episode lasted from the beginning of February 1999 until
surgery.
Each year I have invited old friends to an annual ski outing
day, "Men's Day". In March 1999, Bill Campbell arrived for the
event from Boston with information that made a profound change
to my life. Knowing of my affliction, Bill gave me the names,
phone and fax numbers of two doctors. From Bill's description,
Doctor Roth had assessed my situation and recommended that
I contact Doctor Jannetta.
Doctor Jannetta's office left me a telephone message
recommending two Canadian neurosurgeons. One, Doctor Cusimano, practices in Toronto.
The professional response of Doctor Cusimano and his associates
was encouraging. After an extensive interview, neurological
testing and family counselling, microvascular decompression was
decided on. The procedure took place at St. Mike's on October
23, 1999. It was successful.
Each day I feel better and thankfully think of all those who
supported me through this most trying life experience. it
is now 5 years since the MVD and I have no pain.
E-mail: vlewis@rogers.com
City: Toronto, Ontario
Date: 2004
My TN started over six years ago. I was washing my hair in the shower one morning when this incredibly painful lightning bolt seared across my scalp and forehead. I thought I was having an aneurism or something. These "spasms" started coming more frequently and more became more severe that it got to the point I couldn't touch my face, washing my hair was a nightmare. Brushing my teeth, blowing my nose and worse, crying, brought the spasms on with a vengeance and the wind and cold became my enemy.
I went from doctor to doctor, neurologist to neurologist, only to be told there was nothing wrong. My own GP kept telling me it was stress and migraines. Even with the MRI scans showing a venous anomaly doctors kept telling me there was no problem.
Finally I found a neurologist and neurosurgeon who confirmed TN. This took almost two years. I had been off work on disability and was so heavily medicated that there are major gaps in my memories of those years. Unfortunately those gaps don't include the memory of the pain. After trying drug therapy and realizing it wasn't working in '99 I had Balloon Compression surgery and was somewhat pain free for a year. However it seems the surgery caused Anesthesia Dolorosa which I still battle with to this day.
The pain returned in 2002, After deciding what to do next I had Gamma Knife Surgery in Pittsburgh. Dr. Kondziolka and his team were incredible and for almost nine months I was pain free before the spasms started yet again.
Thankfully I found Dr. Kaufmann. I had actually sent him my scans in 2002 but we decided at that time Gamma Knife was the way to go. This time around we decided we would send him on a fishing trip to see what he could find. I had MVD surgery in March '04. He found two arteries pressed up against the nerve that couldn't have been seen on the MRI. It's been three weeks and with my fingers and toes crossed so far so good. No spasms, no pain. The headache and full feeling in the ear that is expected after the surgery get less and less and every day. He of course can't guarantee that the venous anomaly won't cause me problems in the future but we both feel confident that he took care of the culprits that were causing my spasms.
This battle has been hard and there have been an awful lot of casualties along the way. Having to stop and re-start my life every couple of years has taken its toll. But thanks to Dr. Kaufmann every day I get closer and closer to having my life back. I am off my narcotics,- may my body never see those again - and I am slowly dropping my levels of my other meds. My system is still upside down from dropping levels of medications and I carry that fear of when is the next spasm coming each time I am out for a walk (I still wear a head band to protect my forehead from the wind) I try and zip through the frozen food section of the grocery store as fast as possible and I still wash my face so very carefully each day. I am working through my fears and know that with time my fear will slowly fade. My summer is looking brighter and brighter each day. When I close my eyes at night I pray for a pain free day the next day and I thank the Lord for helping to find Dr. Kauffmann and his team.
Email: jan.williams@shaw.ca
Location (city): Calgary, Alberta
Date: 2004
For me the first symptoms were numbness and little pains that I was sure indicated a dental problem. My dentist agreed and cheerfully did several root cannels - three on one tooth. The pain would disappear for a short while but always came back
In June of 2001 I experienced the severe electric shock like pains for the first time. It woke me up in the middle of the night. Nothing seemed to help very much although I could get some momentary relief by placing ice packs on my forehead. The pains were across my cheek and jaw.
My family doctor diagnosed the problem immediately and started me on Tegretal. Tegretal was effective for a while, but I was never able to decrease the dose and in fact had to increase the dose every few weeks. I developed tremors, difficulty thinking and speaking, drowsiness and elevated liver tests. I tried to switch to Neurontin but that was not effective alone. So I used a combination of Tegretal and Neurontin. The side effects became worse.
In 2003 I traded the Tegretal for Trileptal and I began to see a decrease in the side effects. However it became obvious that the pain was increasing and drugs were not a permanent solution. By this time the pains were across my face, along the nose, in the forehead and eyelid. At one time I was taking Trileptal 1000 mg and Neurontin 2400mg each day and still had episodes of pain. The pains were so strong that I thought I could hear them crackle.
I did a little searching on the internet and read about the Gamma Knife in Winnipeg. It sounded like a great solution for me no holes in the head. I sent off an e-mail to Dr. Kaufmann. We spoke on the phone and we decided that the MVD was a better solution for me. While I was waiting for my surgery I had an MRI done. Good thing because it showed a tumour was sitting on the Trigeminal Nerve.
So I went off to Winnipeg where I had an MVD and removal of the tumor in Nov 2003. Not all the tumor could be removed during surgery but it isn't causing me any problems right now. The surgery itself was far easier than I expected and the recovery relatively easy. I was up and about the day following surgery and came back to Calgary four days later. I was able to come off all drugs in about 2 weeks. It has been heaven since then! No TN pains! No drug induced side effects. I have my life back.
Email: pgmoyer@telusplanet.net
Location: Coaldale, Alberta
Date: 2004
It all started one night when I was driving home during a fall rainstorm. I turned a corner and thought that a bolt of lightning struck the ground in front of me. Then in an instant, the pain came. It was so excruciating that I could barely finish the drive to my acreage which was only 1/4 mile from where this happened. My hubby took me to the hospital where the doctors thought I had a detached retina. They brought in an eye specialist who examined me and said that there was nothing wrong with my eye but she thought that it was a neurological problem and booked an appt. with a neurologist one week later.
The neurologist almost immediately diagnosed TN and put me on Tegretol. The pain was almost gone within the first few days of being on Tegretol. That relief only lasted a short while though. I increased the dosage almost daily to continue the relief but the side effects were horrible for me. I think I had them all. My TN pain was on the right side upper and middle branches. 2 years later, I heard about the TN Support Group in Lethbridge. I heard about Dr. Kaufmann and the MVD surgery. I checked out the other methods of relief but decided that the MVD was the procedure that I wanted if I were to opt for any procedure. When my pain got so bad that I was taking way too much Tegretol without any relief, I decided to call Dr. Kaufmann and book the surgery. By the time the surgery rolled around, I was in constant pain, couldn't eat anything at all unless I sucked it very gently through a straw, couldn't go out in the slightest breeze, couldn't brush my teeth, couldn't hardly talk, could barely bathe my face or let the shower water touch my face, etc. Wearing makeup was out. Even wearing my eye glasses was painful.
I flew to Winnipeg on Sunday, had tests on Monday, surgery on Tuesday, out on Friday, stayed at friends on Saturday just in case anything happened and then flew home on Sunday. I knew immediately when I woke up from the surgery that my pain was totally gone. I had a terrible headache and a very stiff neck. The headache disappeared within a couple days. It has now been 15 months since my surgery. After-effects of the surgery are still: slight stiff neck, tenderness in the surgery area, a slight hearing loss in my right ear, tinnitus in my right ear, and some very bad headaches on the right side. All in all - I think it's still a good trade for the TN pain.
Email: helenbrown@shaw.ca
Location: Calgary, Alberta
Date: 2004
I cant remember exactly when I had my first twinge of facial pain. I know it was before 1981. It started very mildly. It felt like I had a tooth ache but that was not possible because I have worn upper and lower dentures since 1963. The attacks came and went and I was unable to determine what was causing them.
As the years passed the attacks became more frequent and more severe. The pain also spread. It shot straight up the left side of my face and seemed to go right out the top of my head. It shot across my cheek to above and below my left ear. It shot down my face to my left jaw. It would strike at just about any time. Eating became a true challenge. So did talking and that was a disaster as I was an elementary school teacher. I remember clearly having to stop reading to the children because I just couldnt tolerate the movement. Standing outside on supervision in the winter saw me repeatedly come in with tears of pain from both the cold and the TN.
At the time I was in my mid 30s and traditionally TN does not strike that age range. My doctor had no clue as to what was causing my pain. His first diagnosis was for cluster migraines. I took so many medications for migraines that I cant even remember what they all were. None of them gave me any relief.
Eventually my doctor referred me to a neurologist who diagnosed TN. He admitted that it was strange in one so young. He ordered an MRI and subsequently sent me to a neurosurgeon. The surgeon very bluntly told me that I would have to have the surgery because the pain would become so intense I could no longer tolerate it. I was terrified! I had never been in a hospital (except for my birth) and to have my first time to be one of cranial surgery was absolutely unbelievably frightening. The surgeon also recommended the sooner the better as the recuperative powers of the human body deteriorate with age.
January 1992 saw me undergo the Janetta procedure (MVD). I awoke in intensive care without pain and it was the first time in so very long. The surgery was a great success.
From that time to this I have had only one minor flare up. It was about 2 years ago. I went back on Tegretol for about 6 months and the pain disappeared. I am currently completely pain free and off all medication.
If it hadn't been for my friends and my faith I don't know how I could have coped with the overwhelming fear I had to live with. In retrospect I wish I would have had access to the Internet, to a support group, to a book called Striking Back. My life would have been much easier. Be that as it may, I survived and having the surgery was the best thing I could have possibly done. I still have a tender spot on the back of my skull where the incision was made but that is my only side effect and it is a small price to pay for the miracle of living pain free after all my years of agony.
Location: Abbotsford, B.C.
Date: Updated November 2004
This story of living with TN is about Ray and Betty Trudeau, who have both suffered with TN, I think perhaps a rarity.
Betty first started having facial pain while we were living in FL. around 1982, and our first experience with a medical professional was a dentist, and Betty went through a number of dental treatments to no avail including a special dental plate for TMJ. At one time, they had set Betty up with some sort of a gizmo that used to give electrical shocks to her cheek, we tried acupuncture and probably a few others that escape me now.
Finally, we were sent to a Neurologist, and the problem was diagnosed as TN and that started the medication treatment, Tegretol was first, and that worked for a period of time, then we were referred to Shands teaching hospital, which is a part of the University of Florida in Gainesville. After many tests it was suggested that the best treatment, among others, was Micro Vascular decompression surgery, we were explained the risks and the benefits and decided to go with this procedure.
The MVD worked for about a year, and then the pain returned with a vengeance, Betty had a Rhizotomy in Gainesville, and again it worked for a period of time but then back on Tegretol when the pain returned.
By this time we had moved to Vancouver and was referred to a DR at the VG and had another Rhizotomy, which turned out to be a horrible experience for Betty after the treatment she received in Florida.
About this time 1996-97 I also began experiencing facial pain and went to a Neurologist right away and was also diagnosed with TN. Now I knew what it was like for Betty, the electric like shock pain, that can come like a thief in the night. This lasted until I was on about 1000MG of Tegretol, then I had to do something. I found the Gamma Knife on the Internet in Seattle Wa. and because I been through all Bettys possible solutions, and the GN was non invasive, I opted for this solution and it proved the right one for me, no pain since the procedure. Before Betty could be pain free she had to undergo two GN procedures before she had the same result. It has now been over 5 years since the procedure and she is still pain free, and medication free.
And thats our story ..
Over the years, after being on many web sites for TN &Hemi facial spasm, and communicating with a lot of people over a span of twenty years or so, the lesson that always seemed to appear was that if you do decide to opted for a MVD procedure, make sure the surgeon has a long track record concerning this particular procedure and not just one or two a year . Thanks