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My TN Story
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.
Amzad in British Columbia:
My Story: April 2017
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.
Barbara in Winnipeg:
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.
Wendy on Vancouver Island:
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 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 Canad 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.