Stories

TN Stories from across Canada

Bev in Duncan, BC

One day, my husband rested his hand on top of my head as he walked by me. The pain was so great felt by me that I cried out,  to his surprise, as he really had meant it  as an expression of caring.  From that day forward the pain radiated down the side of my face and I could not tolerate  wind or even a light scarf  touching me.  It would come and go but gradually became worse and required analgesics.  Fortunately my doctor was able to diagnose it and I began a light dose of Gabapentin.  Gradually the pain worsened to the point that I could only get some relief from 2700 mgs ( 9 pills a day).  My doctor had referred me  to Dr. Honey, a very busy Neurosurgeon, and also a TN support group in Surrey.  It was a small group and Charlee told my husband and I about a Dr. Fleetwood in Victoria.  She had heard from others that he was a very good  neurosurgeon.  He performed my Micro- Vascular Decompression after diagnosis was ascertained.  I was gradually taken off my medications and I am happy to say I have been pain free  since my surgery in 2019.  I only hope that iI can help even one person,  I will have done something very worthwhile.  

                                                                                Sincerely,  Bev Tate

Mike in Ontario 

In the late afternoon of Friday 13 March 2009 I was involved in a remote workplace rollover snowmobile accident on Lake Temagami, Ontario.  The impact of the left side of my helmet with the ice left me unconscious and alone (without a quality helmet I would not have survived), it was -20*c and approach night time.  It was dusk when I started to regain conscious and very slowly I was able regain function of my limbs and access the still running snowmobile.  I carefully made my it to my work vehicle 5 kms away and drove the 80 kms back to home.  The pain in my head and face was constant and got worse over the next 2 days, I attended the local hospital where it was determined I had a concussion.  The symptoms of my concussion slowly eased over the next 3 months, but the pain in the left side of my face never did.  There is a constant crushing type pain in my scalp, forehead, eye socket, nose, cheek, jaw and even my teeth and tongue, but only on the left side.  There are also quick blasts of lightening bolt type pain across my left eye from the outside edge inward toward my nose, these are brief but brutal!

 Over the next 5 years I saw many different doctors and it took a long time to diagnose that I had Trigeminal Neuropathy, very similar symptoms to Atypical Trigeminal Neuralgia, but caused by physical damage to the trigeminal nerve.  I was prescribed Gabapentin, then Lyrica, then Amitriptyline all with limited improvement and fatiguing side effects.  I saw a pain clinic specialist in Toronto who prescribed strong narcotics, but is seemed that after a few months I would repeatedly need an increase in the dosage.  In the fall of 2014 for an unknown reason my symptoms greatly intensified and I searched for relief in earnest.  By chance I met a chiropractor at my next pain clinic appointment who prescribed I see a physiotherapist for manual therapy and deep dry needling.  I was very lucky to find a physiotherapist who could provide these services in my small community and I started treatment immediately.  Over the past 5 years I have had manual therapy or dry needling at least once a week, and if I miss a couple weeks my symptoms gradually worsen.  Manual therapy involves traction on my neck, massage of my neck and shoulders, pin-point laser treatment on my face and therapeutic ultrasound (this feels amazing, makes the pain melt away).  Dry Needle therapy involves pushing a long thin needle deep into the acupuncture points of the face, neck and shoulders; it really hurts to have it done, but does release the tension in the muscles and I do feel better the next day and onward. 

 Another workplace concussion in 2015 was much worse than my previous accident.  Resulting from this accident I saw an exceptional Head Injury Specialist at the Toronto Rehabilitation Institute who took me off the narcotics and prescribed me Tegretol (Carbamazepine), it has been very effective, especially at controlling the electric shock type of pain.  A new Pain Clinic Specialist also prescribed me Cymbalta which assists in reducing the pain level and improving my overall mood of confronting this condition every day.  I have also had 2 deep injections into the trigeminal nerve itself, these are very painful to have done without anesthesia, but it is only a 90 second procedure.  I found these injections to be somewhat effective for me, more so along my left jaw, upper lip, teeth and tongue; the effect is wearing off now and I will have these injections done again soon.  Tylenol T3’s and a lotion compound of lidocaine/gabapentin/amitriptyline is utilized on particularly bad pain days.

Over the years I have found that my Trigeminal Neuropathy pain is also influenced by outside sources mainly; stress, fatigue, wind and temperature extremes.  I included Mindfulness Training in my treatment and found it effective at reducing the pain, unfortunately I usually procrastinate until my pain is severe before I take the time to utilise the techniques of rest and meditation.

I searched for years to try to find the right doctor, medication or treatment to eliminate the constant pain in my face; I think that after a decade I accepted that I can only manage the symptoms and that I will have this condition for life.  Throughout this adventure I have had to deal with many medical professionals and organizations.  My injury was workplace related, and I found my employer and the Ontario Workplace Safety Insurance Board to be excellent to deal with and very accommodating.  The doctors and specialists who treated me always had my best interest in mind and after a proper diagnosis my specific treatment plan has been much more effective.  My family and friends have become used to me having this condition and I am most thankful that they provide me the opportunity to step away from situations when I need 20 minutes to rest and turn the pain level down.

Living in an isolated location I regret that I have never had the opportunity to meet with another person with TN/ATN.  I keep up-to-date with treatment information online through CaTNA and an email group I am part of, but hope someday to attend a TN/ATN group session in person.

Thank you for reading about my long journey with Trigeminal Neuropathy, maybe the treatments that have been effective for me, can work for you also.

Gaye in Calgary:

My name is Gaye Mackie and I was first diagnosed with TN in 2000. My diagnosis was fairly fast from my family doctor who said that it was either Trigeminal Neuralgia or Post Herpatic Neuralgia as I had Shingles years before. She referred me to a neurologist, Dr. Furtato, who sent me to Dr. Kiss who verified that I indeed had TN and that she would like to see me once a year for the rest of my life whether I had surgery MVD or not. Then in 2005 I chose to have the MVd but it was not successful.  So on to medication, Tegretol for a time and wrestled with the side effects etc and then Dr. Furtado recommended that I go to Winnipeg to see Dr. Kaufmann as I was at the maximum dose of tegretol.

In 2010 I had another MVD by Dr. Kaufmann and was just about immediate relief for three years and I was drug free and pain free for 3 wonderful years. In 2013, TN reappeared and back onto Tegretol - I went and ended up at maximum dose by the fall 2015 when Dr. Kaufmann recommended a Gamma Knife treatment. Funny thing, I had no TN attacks after they gave me a date for the treatment of December 10th, 2015 and I went through the treatment and have been

pain free, drug free since then. I have numbness on my right side and the right side of my tongue and tingling when I have been exerting (working out on the treadmill) but no TN.  Life is good for now.

Amzad  in British Columbia:

December 2015 I started experiencing strange sensations in my lower jaw. I visited my dentist on several occasions with no conclusions. Mid January 2016, while in the shower I had a severe electric shock attack in my face lasting several minutes. It was frightening. I immediately went to the doctor who prescribed carbamazepine. He then got me to a neurologist the following day. The neurologist wanted an MRI, which, due to the long wait, I chose to have it done privately. The radiologist report said there was no compression on the nerve. My wife and I researched TN and came across Dr. A. Kaufmann in Winnipeg. We wanted a second opinion and at the same time found a TN support group in White Rock.

At our first TN meeting we learned our host Charlee had MVD with Dr. Kaufmann along with another member. Charlee provided us with all required information.

We contacted Olive at Dr. Kaufmann’s office and forwarded my MRI. One week later she called and said I had compression on the nerve and was an ideal candidate for MVD.

The TN was progressing with more intense and frequent shocks. The carbamazepine was continually increased to high levels which now included lyrica. It helped, but the shocks never stopped. For 2 months prior to surgery all meals had to go up a straw. I received a phone call from Olive and after one cancellation I was scheduled for MVD January 2017. 

My wife and I stayed at Canad Inn, which is attached to the hospital, convenient with beautiful suites. Monday January 30 was my consultation meeting with Olive and Dr. Kaufmann. He was a true gentleman, kind and compassionate. I felt completely confident in him. The following day was my surgery, it was a success. After a check up from Dr. Kaufmann on Wednesday I was back in my hotel suite. Friday was my final check up appointment with Dr. Kaufmann. We left Winnipeg on Saturday February 4.

Dr. Kaufmann is SIMPLY THE BEST. He is a brilliantly skilled neurosurgeon. The process of inter-provincial workings was effortless. He has a fantastic team of dedicated people. It was a privilege to be in his care.

I am still taking 200mg carbamazepine per day, until I get my confidence back. I have some tingling and some occasional very mild pain, but was told this will take time to settle down. I get pain around the surgery area with some earaches and there is numbness in the surgical line and top portion of my ear, which are all post surgical and will most likely disappear overtime. This MVD has given me my life back.

As requested, I write a brief monthly update to Olive and Dr. Kaufmann. Olive also phoned me for regular follow up. I was most impressed when Dr. Kaufmann sent me an email response too! 

 Jan in Calgary:

My story is a short one - I began with the typical signs of TN - electric shock like pains which woke me up one night. After a repeat performance the next night, I went off to see my family doctor. Guess I was lucky because he made the diagnosis right away and I walked out of his office with an Rx for Tegretol.  

Over the next 2 years, pains came more often and became more severe. After a few detours  with neurologists and another neurosurgeon in Calgary,  I found Dr. K's website and sent him an email. My family MD supported this because he knew him from his work in Calgary and highly recommended him. Within a few days, Dr. K phoned me and we decided on an MVD. I needed to get an MRI pre-op so I had that here in AB. That showed I had a tumor pushing the blood vessels onto the nerve. Dr. K agreed to remove what he could and do an MVD. That was in 2003.

Fast forward to today - I remain pain free and drug free!

Barbara in Brandon:

Hi. I have had ATN since 2011. It has become increasingly worse and I had to go on long term disability 18 months ago. I am a nurse, worked in ambulatory clinics. I am married, with children and grandchildren. 

The drugs have kicked my butt! I have been on a cocktail of them, and have ended up in Serotonin syndrome with them. Luckily my physicians have all been very supportive, but there is no balance between pain relief and drugged beyond rational thinking!

The atypical part is what causes me the most grief. Pain and pressure to my face that lead to headaches. I am on my 3rd round of Botox with some relief, but certainly don't consider myself functional. 

I have seen Dr. Kauffman twice. I am not considered a good surgical candidate because of the atypical nature despite MRI showing nerve/ vessel contact. I will try to see him again as sometimes desperate times call for desperate measures. 

The pain is intolerable but the worse part is becoming so completely undependable. I feel I can't commit to much any more as the nature of the pain is so unpredictable. 

Wendy on Vancouver Island:

Hi all. 

I live on Vancouver Island. I'm 58, married to a saint, have two adult kids, and was a Grade 4 teacher when I came down with TN. 

It happened after dental surgery. Some docs think an open cold sore was the cause--the herpes travelled into the root canal and down the nerve to the brain, but I'm beginning to think that's not the case. Not that it matters much. 

The TN pain is pretty much controlled by Lyrica, but my TN2 pain makes my life very difficult. Cymbalta and ice are the only things I can use to combat it. Works a lot of the day, but come nighttime, I'm often quite miserable. I'm on 900 Lyrica now, which has been great. 

I don't know anyone else with my condition personally, although I've chatted a bit with people on American forums. 

Charlee in Surrey:

Charlee is the group leader in White Rock. This is her account of her recovery after the MVD in Winnipeg.

I have been in remission since a minor flare up about 8 months ago.

I finally had the MVD surgery on November 9, 2015 with Dr. Kaufmann in Winnipeg after two cancellations (Nov. 3 scheduled and Nov. 6 rescheduled)  and a possibility of a 3rd (Nov. 9th rescheduled) due to emergencies, shortage of nurses and beds. It was very frustrating needless to say, especially when flights had to be changed and hotel stay extended. The surgery was straight forward, but the recovery coming out of anesthetic was complicated with extremely high blood pressure which had to be lowered and I also suffered from vertigo and nausea. Finally, after about seven hours I was transferred to the ICU, but my blood pressure was now too low and they had to bring it up. Also I was low in magnesium so that was corrected in the IV drip. Tylenol and Gravol was given as needed for headaches and nausea. In the ICU you are woken up every hour and asked  what day it is, your name, and where you are. 

The next morning I was moved to a 2-bed ward. Breakfast tray was substantial and unappetizing even to someone who had not eaten for 1 ½ days, still a little nauseous and just wanted something light. The nurse said that if I could eat, pee, and walk around I could get discharged in the afternoon, so I ate a little container of yogurt and drank lots of water. Lunch was soup and salad which was much better. I peed and walked around the hallway, and when Dr. Kaufmann came to see me in the afternoon, he said that I was doing fine, impressed that I could turn my head and, all things considered, I could be discharged mid-afternoon. It was convenient that I was staying at the Canada Inn which is attached to the hospital so I didn’t have to go far. Dr. Kaufmann and his team were wonderful and did the best they could with the inadequacies of a busy hospital. After I got to the room I slept a lot after taking Tylenol and Gravol. Woke up early evening but wasn’t hungry. Drank a lot of water and had some green tea. Took a nice bath and then went back to sleep. Awakened around 10 pm with restless legs, I couldn’t keep my legs still. Walked around the room in the dark, did leg exercises, tried to sit and read but nothing worked. Took another extra strength Tylenol, 2000 mg echinacea and then managed to get some sleep. In the morning my head felt heavy around the forehead and had some pin prick pains where the halo supports were during surgery. Also I had a little deafness in my left ear.

2 Days after MVD: Wednesday, November 11

Early morning I took a shower, washed my hair and it felt so good. My neck was a little stiff and my head was heavy so I took Tylenol as needed. Went to Starbucks downstairs to get green tea, yogurt to eat and then went back to the room and slept some more. For lunch, my sister and I walked to the hospital cafeteria. Still not having much of an appetite, but I had a fruit salad which hit the spot and gave me some energy. Developed a dry cough now and then probably from the intubation during surgery so sucking on cough drops helped. Phoned Dr. Kaufmann later in the afternoon to tell him I was doing fine and then booked a flight home for Thursday evening. I just had soup and a banana for dinner. Figured  the restless legs the previous night may have been a muscle problem so I took a Calcium Magnesium supplement and Tylenol before bed. Slept well that night. 

3 Days after MVD: Thursday, November 12

Neck stiffness was gone and I could turn my head with no problem. Still taking Tylenol in the mornings after getting a heavy head feeling upon waking. There was still the little hearing loss in my left ear. Also had my first bowel movement since Monday morning. Went for breakfast buffet at l’Bistro which was very good.  Ate lightly and enjoyed the fresh fruits for which I seemed to have a craving.  It’s strange that after surgery I had no desire for high fat foods and sugary sweets. Maybe my brain is telling me to eat healthy. Dr. Kaufmann phoned in the afternoon to find out how I was doing.  I said that I was doing fine and told him about the deafness and he said it was normal and it may take about a month to settle.  Also thanked him for all his efforts and  how grateful I was that the surgery got done.  

In the evening, we flew back to Vancouver. Just before landing at the airport my left ear snapped, crackled and popped and my hearing came back. I have had no deafness in that ear since.  It felt good to be home, took a quick shower and went to bed.

4 Days after MVD: Friday, November 13

After a good sleep I woke up with a heavy headache so I took a Tylenol. Ate a light breakfast and I felt my energy level improving daily. 

6 Days after MVD: Sunday, November 15

Still taking Tylenol in the mornings for the heavy headache after getting out of bed. Incision has been healing nicely. Drove for the first time since surgery to the grocery store.  

9 Days after MVD: Wednesday, November 18

Still waking up with a heavy headache so taking Tylenol. Got on the stationary bike this morning and couldn’t believe how bad my stamina was. Went to my GP to get my staples pulled out. Incision is all healed.  Doing some housework now 

10 Days after MVD: Thursday, November 19

Finally woke up with no heavy head pain. Back to regular household duties and shopping. 

3 weeks after MVD 

Played tennis for 1 ½ hrs. Back to regular activities. Feeling great.

Gloria in Calgary:

I was fortunate to be diagnosed quickly after my first bouts of TN pain in April 2013. Both my family doctor and my dentist were familiar with TN. I found relief through gabapentin. In January 2014, I had an MRI, however, the neurologist who ordered it did not notice any abnormality, so was not able to offer me much hope as he diagnosed it as atypical TN. At the suggestions of members of the TN support group in Calgary, I sent my MRI to Dr. Kaufmann in Winnipeg. He saw a compression that the neurologist didn't, and subsequently offered to perform an MVD. The surgery was done on February 2, 2016 and I flew home four days later. Despite having a wicked headache from the having a hole drilled in my head, my recovery went well. I have had no TN since then, however, I remain on a small dose of gabapentin for other chronic pain issues. It is wonderful to have my life back! I am extremely grateful for the encouragement of the Calgary support group, without which I would likely still be battling this beast.