I remember it all started in 2006 with constant aching pain on my right eye. I was six months’ expectant with my second born child. It was aching constant pain, I took so much medication which did not help. Upon delivery the pain was still there, but not as much as it was when I was expectant.
In 2009 when I was expectant with my last kid, I went through the same torture as before. I was working in a hospital by then as a hospital accountant. I recall one of my colleagues who was a clinical officer who had seen me suffer before say, “Winnie, the pain you are feeling could be nerve pain, why not try carbamazepine”. I told her to give me a prescription, I give it a try. I started using it immediately and it really helped. I was happy and I knew I had nerve problem but did not know exactly which nerve.
In 2011, I started getting frequent attacks, with severe pain on my teeth and right eye. I booked an appointment with a neurologist. MRI was done and the diagnosis then was blood clots in the brain. I took blood thinners for six months but there was no change. The severe pain persisted.
In 2013, I was referred to a neurosurgeon who examined me. The neurosurgeon recommended that I undergo a MRA-Magneto Resource Angiogram- test. The doctor came back with a report confirming that it was Trigeminal Neuralgia-TN. He explained to me about TN and what could be done to help. He told me about MVD-Micro Vascular Decompression- surgery and stated that he was able to perform the surgery.
He then put me on tegretol 200mg twice a day and Lyrica 75mg twice a day. I felt relief with the medication. I was later booked for brain surgery which was done on 19th August 2014. I had unbearable pain after the first operation and went for a second surgery, a week later.
Another week later I was discharged home. While at home, I had this awful headaches, vibrations at the back of the head, loss of hearing on the right ear and different kind of pain just next to my left ear.
I went back to the office in January 2015, six months after my surgery. I was still tensed up with what I was going through. I then decided to come out and look for moral support from any part of the world. I did this through the internet.
First, I googled for the Trigeminal Neuralgia Association and managed to receive the contact details of the association’s CEO-Mr. John Koff. My first email to John was on 25th February 2015. I introduced myself, where I come from and the kind of help I needed.
I was assisted with a list of support group contacts. Since I could not manage to write to all at once, I did it bit by bit from the time I got the list.
On the 30th March 2015-my 35th birthday- I wrote a mail to Anne Ciemnecki and few other people. Fortunately, Anne responded positively on 2nd April 2015. She asked me if we could talk. I gave her my mobile number and she called me the next day. I was more than happy to hear from Anne who really encouraged me. We became good friends and were always in touch with each other. Anne changed my life from a depressed mum to a jovial mum with her positive and encouraging words.
I got back to John Koff and informed him that I already got response from Anne Ciemnecki. I thanked him because he made this happen.
Anne was determined to help me, one day she suggested that I needed to visit the United States. I was so happy when I heard this. We worked on my trip plans together and it finally took place on 16th April 2016. It may have happened earlier, but Anne scheduled the trip to coincide with the conference in Pittsburg on 23th April 2016.
During my trip to the US, I learnt a lot, got answers to my questions, met my friend Anne Ciemnecki face to face. I went to US with an MRI which was done back in Kenya. Dr. Heir looked at it and says the damage is outside the brain, the pain I had was muscle pain and not TN. His diagnosis is cervicogenic headaches and masticatory myofascial pain.
I don’t really know if what I had before my MVD was trigeminal neuralgia, but all I know is that the terrible aching constant pain I had around my right eye and my right teeth vanished after the MVD. The pain I had after MVD is a bit different.
He recommends physical therapy and muscle relaxants which Anne ensured I had few sessions while in the US and I saw much difference. I also got a second opinion from Dr. Mammies who after seeing the MRI said there is no compression. Dr. Mammies also says the noise I hear at the back of my head after the surgery is cervico-spinal fluid, it is audible because the skull fragment was not replaced after the surgery. Dr. Sekula also confirmed this in Pittsburgh.
I give thanks to the Trigeminal Neuralgia Association as a whole, the doctors I met while in the US, the physical therapists, my family who prayed and supported me during my time with pain and most of all to The TNA CEO John Koff and my friend Anne Ciemnecki. Anne I may forget my injuries but I cannot forget your kindness. Thanks.
– Winnie Oguta, Keyna
This article originally appeared in the Summer 2016 edition of the FPA Quarterly Journal. Winnie Oguta a TN patient from Kenya. Her story in her own words, from the onset of pain through diagnosis and treatment support provided by the Facial Pain Association.