My Weird Life – Neuralgia Pain.
**Blogger’s Note – there are very few male images for facial pain and I look nothing like the guy featuring in the image. 🙂 **
I haven’t actually written about my weird life for some time. In fact it has been a while since I have written anything personal at all. However, after today’s events I feel that I need to share with you what happened today and how it has made me feel. I have to say that complaint procedures have been sent to me, but we are all aware how ineffective these are and that in the end I will get a reply which says – “We have investigated the matter fully and found that there is no evidence to uphold your claim”. Anyway, just to get it off my chest I needed to write this.
Since a chipped a tooth over one year ago I have been getting neuralgic pain down the left side of my face. Neuralgia is a stabbing, burning, and often severe pain due to an irritated or damaged nerve. There was a delay in filling the tooth which might have contributed to it, but I just took it in my stride and continued to cope. Over one year later I still get the pain, sometimes so bad that I just need to bury my face in a pillow and hope that it stops. I initially got diagnosis with trigeminal neuralgia, then with an infection somewhere in my cheek and now apparently I have asymmetry facial neuralgia. I have taken a range of drugs from nerve suppressants to antibiotics and, no matter how they treat it, it comes back. Eventually I had a necrotic tooth removed and, after 40 minutes in the chair and a near experience of passing out, was told that everything would be better. This didn’t happen. It just came back and got worse. I live my life constantly worried that the pain is coming back knowing that the next load of antibiotics, which has been known to stop the pain, might be the last course I am allowed. Eventually I decided to pay for a private consultant with an expert and so I booked myself into the Nuffield Hospital hoping that this would make some progression.
As you can imagine, it hasn’t and I am probably in a worse place now than before. I was pleasant and positive at the start of the meeting as I had seen so many over consultants coming out and taking a real interest in their patients, smiling, shaking hands and asking friendly questions. I got called and followed the consultant to the room. I had rearranged my day since he had had a cancellation. He thanked me for coming in early and I joked that he would be able to get off earlier. I was told no, he would go to his next job earlier. I had spent time to write down my history of the pain in detail, including dates, however, he just read a letter from my GP to me. I am sure this was because he hadn’t read it in advance since I know my own history. He was not interested in what I produced and just stated it was strange what it could be. He kept mentioning that it could not be an infection, so he wasn’t sure why antibiotics were working. I got asked I if I had checked my symptoms on the internet and near the end of the meeting I was asked to check something up on the internet that he thought might be causing the pain – he never told me what it was or how it could be cured. After pushing and pulling my teeth around in a dentist chair he left me there and walked over and sat down on his chair with his back to me. I wasn’t sure if I was meant to stay on the chair or go back to the desk. I made a quick decision and went back. There was then a whole minute silence after I had asked what he thought was going on and after the minute I was told that he would have to think about it, but he would get an x-ray done.
I was taken to the x-ray room and a pleasant lady showed me where to stand and that I had to bit into this piece of plastic which she was holding. I commented that I was really OCD about germs and was told that they don’t replace it, just wipe it – she didn’t wipe it after she had touched it. I was then told to sit and wait while she checked the x-ray. This gave me the opportunity to listen into their arrangement for the evening or some sort of going out meal/concert, which a doctor had provided, and how nice it was. I was then told it was fine and ushered back to the waiting area.
I was pleased when my consultant came out and I stood up but he informed me he was having trouble getting the x-ray up on the screen and needed help. A lady obviously supported him in his time of need, since they both came back to get me. The x-ray was looked at and it was commented what a lot of fillings I had – thanks! He thought there might be a granola on the root of one of my teeth. So he packed me off with instructions to contact my dentist, get an x-ray of the tooth done and then book another appointment (probably for his standard fee) in a week’s time. In the mean time I have to try and keep off the antibiotics – so I will be in pain though – well how bad is it? – Well like I have said before it hurts a lot and even makes me start to sweat. I was really despairing now, and was told he was just asking open questions so he doesn’t influence my answers – and said – “do you understand?”. I did think of saying at this point that despite my degree and qualification in teaching which relies on questioning that I didn’t. But I was close to tears by now and was trying to keep it together. After several more silences and whether I understand it couldn’t be an infection and almost the implication that I was addicted to antibiotics I stood up to leave – asking where I pay. I was promptly told they would be in touch.
I did have a sob in the car, thank goodness for sunglasses!, then pulled myself together and phoned the dentist to arrange an appointment, only to be asked why this hadn’t been done at the hospital and that they would need more information. I apologised to the dentist and tried to call Nuffield only to be told that I had to phone the consultant’s secretary. I duly did this, but she had left work (3:50) and I got the answer machine. I called another secretary but it appeared that they had all gone. Oh and they don’t work Monday. Tuesday is my dentist appointment if they have the information.
Despite a year of pain I have always tried to stay positive but after today’s experience I feel that I am literally just being pushed around like being that last person to be picked for the football team all over again. I am no further forward with anything and still have the thought every minute of every day that the pain is coming back. I feel that the only safe place is in my flat so it is a real struggle to actually go out – which I am currently forcing myself to do.
On a positive the admin staff at Nuffield were lovely. They were pleasant and approachable and very helpful. Maybe some of the people higher up should take a lesson from them. Also I got back in touch with my doctors and they sensed that things had not gone well and tried to reassure me. I wrote the majority of this post yesterday and today just reading it over to ensure that it was accurate. I’ve managed to eat something today – I was wondering whether eating actually makes things worse of not – and had a good night sleep. I am generally a very pragmatic person. I look for a solution and work towards this. However, currently I feel that there are not many options open to me. I will however, try to persevere and keep going. I’m pain free at the moment, and maybe it will not ever come back…(ducks as a flying pig passes over). So that’s it, waffle over. I am never so keen on sayings but this one appears to be appropriate at this point – “We must accept finite disappointment, but never lose infinite hope.”