The Good, the Bad and the Ugly
CASE STUDIES...
THE GOOD
My First TN Patient by Dr C. Blomberg
I was a little surprised when Mrs A, a 52-year-old married mother of two teenagers, entered my consulting room and promptly burst into tears. During her eight years as one of the patients in my busy North London practice, she had only come to see me for vaccinations and minor viral complaints.
It soon became evident that she was quite unable to talk because of what appeared to be severe facial pain. I asked if there was anyone I could call and ask to join us to provide details of what was wrong. She could just about say "my son" and wrote his number down. Fortunately, he was able to come within 10 minutes and he described in detail what was going on with his mother.
Apparently she was in the middle of some mundane activity at home when she suffered an "excruciating, shock-like pain" in the upper right side of her jaw. The pain had come "out of the blue" and stopped her in her tracks. The pain continued in a "stabbing" way for about a minute before subsiding, only to recur later that evening.
She managed to get through the night without too much discomfort and phoned her dentist first thing the following morning to arrange an emergency appointment. The dentist took some x-rays, which revealed no dental problems, and fortunately he did not undertake any unnecessary drilling or extractions. Instead, the dentist recommended a visit to her GP. From Mrs A's son and her own sporadic notes, I learned that she had not experienced anything like this before, had been in general good health and had had no major life stresses in the year or so leading to this episode of pain. She was experiencing several episodes of pain throughout the day (about 20 or so, in her estimation).
While listening to the account of Mrs A's pain, I recalled glancing through the programme of a seminar attended by my wife, a dental hygienist. One of the talks was given by a neurologist on the subject of trigeminal neuralgia, a severe facial pain described by some as the most painful condition known to man. On further questioning, I was quite sure that Mrs A was suffering with this condition, so I used the internet to find an accurate description of the condition. The most useful websites I found were http://www.cks.nhs.uk/ the NHS Clinical Knowledge Summaries (formerly Prodigy) website - a reliable source of evidence-based information and about common conditions managed in primary care - as well as the Patient UK website, http://www.patient.co.uk/, and http://www.tna.org.uk/ - the Trigeminal Neuralgia Association UK. I was now convinced that Mrs A's diagnosis was that of TN. I initially prescribed a low dose of the medication of choice, carbamazepine, and took the precaution of taking a blood sample, which was negative, for any adverse effects of the drug. I asked Mrs A to let me know how effective the medication was in dealing with her level of pain and explained that we could increase the dose in stages until the pain was under control.
Because Mrs A was my first patient with true TN, I referred her to a neurologist for specialist advice. The neurologist's clinic letter confirmed that Mrs A was suffering with TN and that she had been advised of the various procedures available, should the medication cease to deal adequately with the pain.
Mrs A came to see me a few months later for a repeat prescription. She reported the odd bout of pain ("but nothing like before") and the initial side-effects of the medication had disappeared. I was pleased to hear that she had armed herself with a mountain of information on TN and self-help tips, including one or two books. She was being followed-up by her neurologist every six months. She had also obtained some useful leaflets from the TNA UK and had thoughtfully brought them along for the surgery's waiting room.
I was pleased that Mrs A had at last found some relief from her TN and was confident that I would recognise the condition in my patients in the future.
Dr C. Blomberg
July 2009
THE BAD
My TN Experience by Janet B
No-one could ever forget their first TN attack. Mine occurred while I was entertaining three of my girlfriends at home. We had got to the final coffee stage and suddenly, out of the blue and with no warning whatsoever, I experienced the most painful, electric shock-type pain in my right upper jaw area. I managed somehow to conceal my discomfort by disappearing into the kitchen so my friends didn't realise what had happened. Anyway, the pain went as quickly as it had occurred. As soon as I was alone I went to the bathroom mirror, convinced that a dental filling was about to fall out. However, there was no sign of this.
The following day I made an emergency appointment with my dentist. He gave me a thorough investigation and took some x-rays but could find nothing wrong. I asked him what he thought the problem was but he had no idea. He suggested a referral to a dental surgeon at a local private hospital, which I agreed to. I was glad I had private medical insurance and expected to receive an appointment within a day or so. However, a week went by with no appointment letter so I rang my dentist, only to be told by the receptionist that he'd gone on holiday for two weeks and no referral had been made prior to his departure. I asked if the locum dentist could make a referral but was told not without examining my teeth. I was given an appointment for a week later.
On examination, the locum continually made comments about the state of my teeth, including "no wonder you're in pain" and went on to suggest root canal treatment and the extraction of at least two teeth in the area of the pain. I asked if he would make the referral to the dental surgeon but he said, "What's the point, I may as well do the work myself." By this time, the episodes of pain had increased to about 30 or more a day. I carried on going to work but couldn't concentrate. I couldn't eat, could only drink with a straw and was often too scared to talk for fear of triggering another attack. My defences were down and I agreed to the locum dentist going ahead with the work he suggested. This was done about 10 days later and I returned home unhappy that I had lost some teeth but relieved that the pain was a thing of the past. The anaesthetic wore off, I looked in the mirror, smiled and yes, you've guessed it, I had another attack just as horrendously painful as the others. I sank down to the floor in floods of tears and rang my partner, who came home early from work.
Poor Alan, he was at a complete loss to suggest anything that might help and, in desperation, suggested I went either to the A&E department of our local hospital or to my GP. A&E seemed a better option as at least I would be seen that day, even if I had to wait a few hours. We arrived at the hospital and, under the triage system, I was not considered a priority. Eventually I was seen, was told that the pain was probably due to an infection and given pain relief and a course of antibiotics. I told the treating doctor about my experience with the dentist but this didn't seem to interest him.
The medication had no effect whatsoever and by this time I was becoming seriously depressed to the point that I didn't want to get out of bed in the morning.
I made an appointment with the GP, who looked blankly at me while I tearfully described the pain. He suddenly brightened and said he would refer me to a maxillofacial specialist. By this time he could have referred me to the devil himself, for all I cared. So off I went to the "maxfax" (Maxillofacial) department at a London hospital where I had an x-ray and a blood sample. While waiting for the results I suddenly felt guilty about complaining so much as many of the other patients had terrible facial and head injuries. Anyway, I was called in again when the x-ray result was available. The doctor looked worried and drew my attention to a white area on the right side of my nose. I told him that I knew about this - I was born with a syndrome, which prevents tubes being pushed up one nostril (if ever an ENT examination was necessary, for example) and eventually causes discolouration of the two front teeth. I told the doctor this but he just smiled benevolently and replied, "Don't worry, I'm sure it's not a tumour." An MRI brain scan was arranged for the following week. Friends had told me that this would be scary, impossible to have if I was the slightest bit claustrophobic and that I should take someone with me. In fact I went on my own and had no problem with the scanner at all. The result revealed no abnormality but I could have screamed with frustration when the letter from the maxillofacial specialist merely said, "You will be pleased to know that your brain scan was reassuringly normal." Yes, of course I was relieved but I still didn't know what was wrong with me!
About three weeks later, the longed-for breakthrough occurred. An elderly gentleman called Ted used to come to work in my office for a couple of days a month just to keep himself active and to supplement his pension. He was a retired optician and probably the most intelligent person I would ever meet. He came over to say hello, I burst into tears and, on questioning, described my problem. Without hesitation, he said "Oh, trigeminal neuralgia - it's a b****r, isn't it"?
That evening I spent hours on the internet gathering as much information on TN as I could. I made an appointment with the GP for two days later and triumphantly presented him with the reams of paper I had printed off. His response was disheartening - "Don't believe everything you read on the internet, it doesn't mean you have TN, what would an optician know about this anyway, etc etc." However, by now I was confident (and, I thought, knowledgeable) enough to insist on a referral to a neurologist. I even named the specialist I wanted to see and returned home hopeful and excited about the progress I had made.
Silly me! To cut an already long story short, I was referred to a neurologist (not the one I had named) who recommended an MVD, without really describing what it entailed, cryotherapy (which left me feeling cold, ha! ha!") and acupuncture. I left the hospital feeling thoroughly demoralised and quite scared.
Life has a funny way of dealing with things, doesn't it? Alan arrived home one evening a few weeks later announcing that he had been offered a promotional job with his company in Bristol. Three months, and a lot of pain, later we set up home in the South-West, saw a neurologist in the area and received what can only be described as first-class treatment.
What was worse for me - the condition or the "treatment" I received? It's a hard question to answer.
Janet B
May 2009
THE UGLY
My TN Experience by Marilyn L
The onset of my Trigeminal Neuralgia (TN) was quite sudden but the pain was excruciating, like a bolt of lightning shooting from the centre of my cheek up to my forehead (left side). The diagnosis was immediate by a local doctor (not my GP), who prescribed carbamazepine. I did not know at the time but the dose was very high and whilst it reduced the pain, it made me feel like a zombie.
I was due to go on holiday with my husband, so I saw my GP who reduced the dosage. I managed to get through the holiday with sudden intermittent attacks but could only eat very soft foods such as jelly or baby food or soups. After the holiday I saw my GP again, who changed the medication to gabapentin; this had no beneficial effect whatsoever, so I saw a neurologist who increased the dose, again to no effect.
The attacks of pain were more frequent, more intense and lasted longer. There were times when I could not move and was rooted to the spot with pain. I was unable to go out and became completely dependent on my husband when the pain struck. I was referred to a Neurosurgeon after having an MRI scan. He outlined the various different procedures to treat the TN and with his advice I opted for thermocoagulation. He said it could leave me with some numbness in my left eye and that therefore I would have to be careful I did not get any foreign objects in my eye; he also mentioned there may be a little numbness on the left side of my face.
Immediately after the procedure my face felt very numb indeed but the horrendous pain had gone initially. However the numbness became more and more noticeable; it had spread to the left side of my tongue, lips, nose, cheek eye and forehead. It felt as if my eye was on the end of a stalk and the feeling was, and still is, awful - it is there all the time. The surgeon told me that maybe he overdid the treatment as my pain was so intense.
I have had several eye infections and damage to the cornea because of foreign objects and scratches to the eye which I cannot feel, and I now wear protective spectacles all the time, whereas previously I never had to wear glasses except for reading. As my tongue and lips are permanently numb I cannot eat on the left side, and my food frequently falls out of my mouth, which is very embarrassing. I feel disabled and as if I have had a stroke. My life is not the same and I am very angry as I strongly believe he should have explained more carefully the possible negative effects of the procedure.
My condition is a mixture of TN and Anaesthesia Dolorosa (AD) for which there is apparently no cure and happens in about 2% cases treated for TN. In addition to the numbness I still have intermittent pain, sometimes dull and throbbing and at other times piercing. I am now under the care of a TN specialist who has prescribed pregabalin (Lyrica), and I have had various ‘complementary medicine' treatments including, acupuncture, relaxation, and neuromodulation, none of which has helped. Under her supervision my medication has been changed to lamotrigine but it had adverse side- effects and I am now trying oxcarbazepine together with pregabalin in the hope that it may relieve my symptoms. All the medication makes me confused, forgetful and unsteady on my feet.
Marilyn L
July 2009
One of the above stories is fictitious - can you tell which one?
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>Yes, it's the first one. Sadly The Bad and The Ugly are both true!
This page was updated on 31 August 2009
