Personal Stories
My MVD by Helen Featherstone
The most difficult thing about being diagnosed with TN was coming to terms with the fact that suffering from this intolerable pain was now part of my life. I was only 27 when my dentist explained to me what he thought was causing my face pain. I had been having sharp electrifying spasms in my face for some time; these would generally be short-lived but would occur at any moment. At first I thought it was an abscess, or put it down to over-working and being stressed, and then one day I was in the supermarket with my friend, Jo. I bent down to choose a bottle of hair dye, and was nearly knocked off my feet. The pain came out of the blue, like a bolt of lightning. I couldn't breathe and was gasping for air. Jo was completely stunned and didn't know what to do. Then, a moment later, it went, just as quickly as it had come. The only way I could describe the pain was that it was electrifying. (Not that I have ever been electrocuted but I could imagine that is comparable.) It was torturous. I never knew when it was going to hit and I feared it striking again like I've never feared anything before.
I decided something had to be done. My dentist was hesitant to prescribe me with any medication but he told me my symptoms were practically text-book, except for my age. He also said that some of his older patients had TN and were taking a drug called carbamazepine (Tegretol). He suggested I had a chat with my GP and that I should start taking medication.
The visit to the GP was horrendous. He thought I had toothache and said my symptoms weren't text-book at all; that I was far too young to suffer from TN and that it was highly unlikely unless I was over the age of 70. How naïve he was. I was absolutely devastated. I was getting my pain in short successions, almost two hundred times a day. I felt as if I was going to go over the edge and I really could not cope. I rang my dentist in desperation and he referred me immediately to the Sheffield Dental Hospital.
The consultant I saw, Dr Loescher was sure that I had TN and prescribed carbamazepine. The pain began to subside and I started to feel better, although I hardly felt myself; I was in an absolute daze all the time. I was forgetting words, forgetting where I'd been and constantly losing things around the house. The only way to cope with this was to laugh but it was also incredibly frustrating. Then, after Christmas 2005, around February time when the nights begin to get a little lighter and the days a little longer, my pain began to subside. I was so relieved; I was going into remission and was overjoyed. I started reducing the amount of medication I was taking and began to feel "normal" again. Everyone commented: my eyes looked brighter, I was more alert and my squash game improved tremendously!
Towards the end of summer 2006, it was a lovely late summer's day and I took a trip to a theme park. I went on a ride, "pin ball" I think it was called. It was quite jolty but not excessively fast. My friend, whom I was with, had problems with his jaw and came off the ride, complaining of its aching. I was concerned and we walked a little way up the path. Then it struck. It was just like in the supermarket: a bolt of lighting, knocking me off my feet and stealing my breath. It was back. That summer it got worse and worse. I put off taking the medication as I didn't want to give up my lease for life and feel like a zombie again. In the end the pain won and I went back on carbamazepine (Tegretol).
I hated the medication, I felt as if it took me over. I was so tired and was not interested in anything. The pain was also beginning to really interfere with my life. I was starting to fear situations which previously I'd relished. Eating was always a problem and I love good food and eating out. I also had to build myself up to undertake the most menial of tasks. It could take me hours to get ready for work. Washing my face, eating my breakfast and brushing my teeth were torturous tasks that always resulted in tears and deep breathing. I really couldn't cope again. I walked into Dr Loescher's TN clinic at Sheffield Dental Hospital and just broke down. I was sobbing with frustration. I felt victimised and still could not come to terms with the fact that this pain would not go away. It would always be lurking in the background waiting to strike. It was the most alienating period of my life. I could not express how I felt to anyone. No one knew what I was going through. I felt as if I was in my own little bubble: watching the world go on without my fully engaging in life.
I tried a different medication, oxcarbazepine, which suited me better than carbamazepine. I was less zombie-like and more eloquent than before; however, it was still not ideal. I felt very tired, drained and exhausted. Winter passed again and, just as before, when Spring came, my pain subsided. During Spring 2007, when my pain was not at it's worst, I decided: surgery was the way forward for me and something I wanted to investigate. I had spent the year deliberating over this. Initially, when looking at options with Dr Loescher, I was told that cranial surgery - microvascular decompression (MVD) - was something to consider. I found this devastating. It sounded ghastly. I remember Dr Loescher saying, "One day you will actually want this." I thought she was mad. Why would anyone want a hole drilled in their head?!
After much soul-searching and research I went to see the surgeon, Mr Battersby. He had a very good reputation and was very serious and quite off-putting about the whole thing. Owing to my age, there was a possibility the pain could be a symptom of MS. Before any surgery could be considered, I had to go for an assessment and the medical team had to be certain that I did not have MS as there was a chance that, if this was the case, the surgery would only exacerbate the problem. This revelation in itself was perturbing and I couldn't help but think the worst. After an assessment, it was confirmed that it was unlikely that I had MS. I was now given the all clear to go ahead and consider surgery as an option. By this point I was becoming ever more certain that this was what I wanted. I would try anything to get rid of this pain. Dr Loescher was right - one day I really would want someone to drill a hole in my head. Despite Mr Battersby's efforts, he did not deter me from my quest. I went to see him again in January 2008, accompanied by my mother and my partner, and I was told that if I was certain this was what I wanted, then I could have surgery within weeks. I could not believe this was so quick. After the last few years of going to see this doctor and that doctor, and having this test and that test, I had reached the end of the road. It was time to jump into the unknown.
A few weeks later, I received a call from the hospital asking me if I could come in for a pre-op assessment. It seemed very quick; I hadn't really had time to digest the whole thing. Luckily, I had booked a holiday to Israel which bought me a little time. I booked the pre-op assessment for my return and went into hospital for my operation on Easter Monday 2008.
I was terrified. It felt as if this was it and I could only think the worst - that I might go into the operating theatre and never wake up again. The registrar came to see me that evening and talked me through what was going to happen. I started to cry; it all seemed too much, but I knew that I had to give this a go. I couldn't let this pain get the better of me anymore.
I hardly slept a wink. The hospital was so noisy and I was so worried. I had to get up earlier than the rest of the ward to prepare for my surgery. I think that was one of the worst parts. I was given a robe to put on and my surgical stockings and told to shower and wash my hair - something I would not be doing for a while. It felt quite bizarre and almost like a ritual. A superficial and vain point in the scheme of things was that I was also very uneasy about the idea of having a chunk of my hair shaved off.
The porters came to collect me and took me down to theatre. I felt very sombre and a bit weepy. By this point I was exhausted with all of the thinking and worry and deliberation. I just wanted to get it over with.
I remember going into the anaesthetist's room at 9.00am. They were wonderful at putting me at ease and although it was slightly uncomfortable they undertook the process of sedating me as if it were a beauty treatment. The last thing I remember was talking to the anaesthetist about diving in Mauritius.
I woke up at about 3pm in the high dependency unit. I had been through this moment so many times in my head. I remember gaining consciousness, and being aware that I could feel my hands, move my feet and hear sounds on the ward around me. Slowly I opened my eyes. Everything seemed in working order. A big fear had been that I would lose my hearing or have temporary visual impairment. I remember feeling so alive and lucky. I really could not believe it. Everything worked and, apart from being in a cushioned morphine haze. I felt fine.
The sister asked me how I was and the surgeon came to do some sensory tests. I had a blink reflex which apparently was very good news. When I sat up I was sick from the anaesthetic and, although not pleasant, this was not as bad as expected. I had heard horror stories of people being sick for days. I just felt as if I was quite hungover. I had also acquired a series of tubes, the most inconvenient being the lumbar puncture and the most painful being the deep one inserted in my right wrist.
My family and friends starting coming to see how I was. I couldn't turn my head to the right and I felt rather stiff but the overwhelming feeling was that of euphoria. I had no pain and no severe side-effects. I felt so lucky.
I was completely bed-ridden for the next two days. On Thursday I saw the physiotherapist and did a short walk to the end of the ward. My spatial awareness was a bit shaky, and having restricted head movement didn't help, but I started to manage to get to the toilet on my own and could get out of the bed and into the chair. I was making good progress. On the Friday the registrar granted me weekend leave. What a luxury! It was so nice to be back in my own home, with my family and my own bed.
I returned to the hospital on the Monday and stayed there all day but was allowed home again in the evening. I had to return on the Wednesday to have my stitches removed. I had sixteen stitches and anticipated this would be a rather painful experience. Although it involved a bit of pulling and tugging it was actually OK. In a few days' time I would be allowed to wash my hair! I couldn't wait. The longest I've ever gone without washing it was for two days; I've never been good at the natural look. I'd opted for head scarves, which also hid the loss of hair, although the surgeon had done such a good job in concealing this: unless you looked closely, you couldn't tell - it was just like having an undercut. In the grand scheme of things, my hair loss now seemed trivial.
Almost a year on - well, nine months later - I feel fantastic. I have had a few tweaks and twinges, reminding me that there is something not quite right, but no pain like I felt before. I've lost over a stone in weight, as the medication had affected my metabolism, and I also now have a new zest for life. I am much more active; I have taken up cycling, which was an impossible thought with TN because the wind on my face would have been agony. I've enjoyed my first winter in several years. I feel liberated to stand outside in the bracing wind and feel the rain on my face. The transformation in my quality of life is immense. I realise someday there is a chance that my TN will return but I now feel much more equipped to deal with that, if it happens. In the meantime, I intend to make the most of being pain-free.
Quite early on in my diagnosis I started to search the internet, looking for any information that could provide me with more insight into my condition. I came across the TNA UK website and signed up immediately for the forum. I couldn't believe that there were this many people, online that I could chat to, who understood what I was going through and who could offer support. I joined the Association and began to receive the newsletters which also helped, and gave me a much better understanding of TN and the options available. I also found it very interesting to find out more about the possible causes of TN.
I am now Regional Support Worker for Sheffield and Manchester and I would be happy to discuss my experience.
Posted 23 January 2009
