Tn Stories

Trigeminal Neuralgia Stories

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 president@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

  • Name:Jennifer Sweeney
  • Location: Vancouver, BC
  • E-mail: jsweeney@telus.net

Balloon Compression Rhizotomies in Winnipeg with Dr. Anthony Kaufmann – read her story: Balloon_Compression_Rhizotomy.

    • Name: Bill Alderman
    • Location: Niagara-On-The-Lake, ON
    • E-mail: walderma@becon.org

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 & I’m 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 didn’t 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. I’m 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, I’M AN ADVOCATE OF THE GLYCEROL RHIZOTOMY!

      • Name: Gary Bauer
      • Location: Calgary, AB

 

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

 

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.

 

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 became so 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.

 

I have had TN since childhood, though I did not know what it was when I was young. As a child a shock like pain would strike my face. I would freeze like a statue and press my hand to my face. The pain would go away as fast as it arrived and not come back for months on end. When I got older it would strike 3 or 4 times in a row. When I asked my doctor she told me it sounded like a cluster migraine of some sort and wasn’t I lucky that it only lasted such a short time. So I went on thinking that was my problem.

In my 20’s I experienced my first bout of TN that lasted for several days. I just thought it was a migraine and persevered.

In my 30’s I experienced some strange eye pain, like someone was trying to poke my eye out from inside my head. In the years prior to that I had become prone to sinus infections, or so they thought. No one could find anything wrong with my eyes so once again they chocked it up to my sinuses and sent me on my way. Shortly thereafter I had a bad cold and was hit with a bad sinus infection. This time it really was a sinus infection. The problem was the pain never went away. For five months I dealt with pain even after the infection was gone. The dentist could find nothing wrong but I felt like I wanted to pull out several teeth! In August I was outside and found myself turning away from the wind. So back to my doctor. Again I was told a sinus infection and put on antibiotics and steroids. They did X rays to see how I responded. I heard nothing from my doctor. However a few weeks after the antibiotics were done I developed strep throat and went back. I asked about the x rays and found out I never did have a sinus infection. This led to a CT scan – also negative. Throughout this I too was searching for answers. A friend, who is a practical nurse, said ‘it sounds like one of my patients who has trigeminal neuralgia.’ That was the first I had heard of TN. I looked it up on the internet and was shocked to find the pain I had lived with since childhood perfectly described! I took this information to my doctor and got referred to a neurologist.

This began a long trip of trial and error for me. I tried several medications without much luck but with great success in terms of being drugged, dizzy, sleepy and dopey! I had a balloon rhizotomy in Sept. of 2004. This procedure totally did not work for me and left me in more pain and with anesthesia dolorosa. In April of 2006 I flew to Winnipeg and had the MVD. By this time my odds of success were very slim. My TN had progressed over many years and was now complicated by the AD as well. During the MVD they found 2 places where the vein was pressing on the nerve. In one spot the vein was so pressing on the nerve it had indented the nerve. I still had TN pain when I woke up and, at first, though the surgery had failed. However I was encouraged to give it time. Gradually over the next few months the TN pain eased. Now, three years later, I do still have the occassional pain from TN but it is a shadow of what it was. I am able to eat again, go out, and have regained the strength and energy I had lost. I am on a very small dose of medication for TN with little to no side effects.I have taken up running and run half marathons. I hope to run a full marathon some day. Each time I stand at the start line of a race I think of the days when I was underweight and could barely walk around the block let alone run over 20KM! On August 15, 2008 I stood on the summit of Mt. Kilimanjaro looking at the sunrise and marvelling at the changes that had occurred.

I attend a TN Support group to encourage others to push through and seek answers. The answers for me did not come easy. I still do deal with AD and some TN but I also do have a life again. And I push for the day when everyone with TN will be able to say “I HAD” instead of “I have!”

 

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.

 

I can’t 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 couldn’t 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 can’t 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.

                  • Name: Ray and Betty Trudeau
                  • Location: Calgary, AB

 

Location: Calgary, AB