Persistence.

I think this has been my mantra over the past four years. It's certainly a word I've heard and said a lot of times. In the UK the NHS has a peculiar reputation. There are horror stories and there are headlines about how much better the system could be but I believe that, deep down, the average 'man on the street' expects they will get a good service, if they ever need it. At the end of the day, I've met a lot more people that the NHS has helped rather than let down.

If your chronic pain persists, you need to persist and you need everyone you come into contact with to persist for you!

Four years ago I suffered a DVT. The clot was huge (it still is), it starts in my abdomen and goes down the big vein in my left leg. I suffer pain as a result of this. It affects both my legs with my left leg being a little worse. Most of the time my legs feel tired, with dull ache or sensation of cramp. If I exercise, the pain increases to the extent that I can't walk. In fact, I often use a wheelchair because not walking in the first place helps to avoid the pain getting worse.

Anyway, that's the background. The persistence started with my GP. It took quite a few visits to my doctor before he started to understand exactly how much pain I was living with. I had to be patient and I think he did too.

Often people in Britain are patients of a GP surgery or medical centre. These usually have more than one doctor and, as was the case with me, if you phone for an appointment because you feel unwell, you take the first appointment offered rather than seeing a particular doctor (maybe this is more the case with men?). When returning to the doctor with the same problem, it becomes more and more important that you see the same doctor each time. Despite your notes being available, if you see a different doctor, they tend to treat you as thought this is the first presentation. I don't think this is a fault as such, I think every GP aims to help the patient with the minimum amount of medication and how many times a day do you think they hear people complaining of pain?

Once you have built a relationship with the GP, they will start to build a better picture of the position you are in. Try to help them build this picture. Learn how to describe your pain in terms they can understand and give details of how it affects your life. I think it also helps to try and and explain what you have tried to do to improve your situation. A lot of people gave me suggestions. Many of these were of little value, but some of them were. They were all suggested by people that genuinely wanted to help. I think it is better to try and thank someone for their suggestion and rationally explain why it didn't work, than getting frustrated and impatient then offering no explanation. Unfortunately, no one can see your pain, they can only know what you can tell them.

This process has to take some time. Hopefully something will help but if it doesn't, it's better to have counted out all the simple things before moving on to something more complex or invasive. After all, if the acupuncture had worked, you wouldn't have had the back surgery but would you really want the surgery without trying the acupuncture first?

When these things don't work....Persist! In a sense I was fairly lucky. I did get some relief from the stronger painkillers. On the downside, the relief did not last all that long and the side effects have not been nice! About a year after my DVT, my doctors started to run short of ideas. Up to that point I has been treated with Dihydrocodeine (didn't work) and Oxycontin both in increasing doses. The Oxycontin worked but only for about nine months. I was also taking Amitriptyline 20mg and Paracetamol. I could not take anti-inflammatory drugs because I take Warfarin. I was referred to a pain specialist.

I don't think it would have been any benefit to see the specialist any sooner because he would have run through the same things the GP did. It was once these options had been exhausted that I needed specialist intervention.

He started by trying some of the drugs that are becoming more and more usual in chronic pain treatment. The anti-epileptics and anti-depressants were of limited value, although I did continue to take Amitriptyline at a higher dose of 50mg. On the second visit, he advised trying to rotate the opiate medicine. He said we could introduce Morphine and Methadone and rotate these with the Oxycodone as and when the effects started to reduce.

My GP opted for the Morphine first but this did not work at all, it was quickly changed to Methadone. Initially this was very effective but it was always in the back of my head that the Oxycodone had worked......for a while. Still, in the short term it was something of a wonder drug, it has a lot of stigma surrounding it but should be considered seriously.

Six months later, I went back to the pain specialist for follow up. Here, we discussed options, long term prognosis and future plans. As far as he was concerned, that was it. He said that 'pharmacologically', there was nothing more he could offer.

This left me a bit stunned. I was 32 years old, married with two young kids. I was on a high dose of Methadone which was starting to lose its effect and all that was available to me was a change back to Oxycontin. A tablet that I had already taken and stopped because it was no longer effective. I didn't consider this to be a rosy outlook.

I managed to hold back tears long enough to ask if there was ANYTHING that could help. I had already asked him to take my legs away so I think he realised I was prepared to go to any necessary lengths. This was when he mentioned a Spinal Cord Stimulator. He gave me sketchy details about what it was and said that he wasn't sure where I could have it done, but he would try and find out. I said thank you, but afterwords I wondered why I'd had to ask.

A few months later, I hadn't heard anything. So, adopting my mantra, I went back to see my GP to ask if he had. No he hadn't but he would follow it up. Another month went by and I received a letter from the pain specialist saying that he was not having much luck, so did I really want him to carry on. I phoned his secretary and said YES.

Not too long after that, I received another letter saying that a doctor in Liverpool had agreed to see me. This created some difficulties because I live in Scotland but, providing funding could be sorted out, I could see him fairly soon. That was 18 months ago.

Six months later, I hadn't heard anything. Back to the GP. This time things moved very quickly. I got a vague message saying that the funding application had been approved but had then sat on somebody's desk for several months. I also got a phone call from Liverpool asking if I could go and see them for assessment. The persistence seemed to be paying off.

The Spinal Cord Stimulator is a bit like an implanted TENS machine. This gave me some hope because a TENS machine had been useful for me but its value was limited because I have to wear stockings on my legs. It is implanted onto the spinal cord and passes an electrical current through the nerves that are attached to the painful area.

The initial assessment is usually done in an Outpatient Clinic but, because of the number of people I had to see (Pain Specialist, Surgeon, Physio, Nurse, Psychologist etc) and the distance I had to travel, they thought it more sensible that I stay a few days. The upshot was that they thought there was a chance that it could work but they weren't 100% sure because they had not tried it on someone with the same presentation as me. If I wanted to proceed, the next stage was a 'Trial Wire'.

Again, funding had to be agreed with my own health board but provided this went through I would be down again quite soon.

This funding request took nearly a whole year! That took persistence. I kept asking. I phoned my GP, the Pain Specialist in Edinburgh, the doctors in Liverpool, it took ages and I don't know why. The good news though, was that funding was eventually granted for both the trial and the full operation, if the trial was successful. I was going back to Liverpool!!

The trial wire has electrodes at the top of it. Under a local anaesthetic the wire is fed up the spinal column. A needle is injected into the epidural space and the wire is passed through it. When the doctor thinks it might be in the right position, a current is passed through the electrodes via an external control box. I had to report back the sensation. This was noted and an X-Ray picture was taken of the position of the wire. The wire was then moved and the process repeated. Once we all agreed that the wire was in the best position, a final X-Ray was taken and the wire was secured.

Again, this is a procedure that is usually done on an Outpatient basis. However, due to the distance, I was admitted for a further week in hospital so that the system could be given a proper check.

After the surgery, I was taken back up to the ward and a Nurse Specialist came along to check on progress. The external control box was still attached to the wire and she was able to explain the settings and help me get the best effect from it. I was also given a few 'handy hints', most especially about the postural sensitivity of the system. The sensation got much stronger if my body was straighter (standing or lying as opposed to sitting).

The sensation is a little hard to describe. The analogy to a TENS machine is quite realistic except the sensation is much more 'internal'. It feels like the tingling is right inside my legs, not on the surface. The machine can be adjusted to produce a sensation similar to a pulse (I think, almost as slow as one pulse per second). This can be speeded up to a very fast buzzing. For me, it felt best nearer the fastest position, but not quite full.

My back was a little sore but it soon became apparent that the pain in my legs was much better controlled. I was encouraged to 'test' the system by doing some of the things I had not been able to do because of the pain. I spent the next few days climbing up and down stairs. Something I had not done for several years! Although the pain still effected me as before, as soon as I turned on the machine, the pain stopped. It was amazing! Even better, the effect continued after I turned off the machine, so I still got pain relief up to a couple of hours later.

Whilst in hospital for the trial, it was decided that there was no point altering my main medication. Especially the Methadone. The drug would have taken too long to leave my body meaning that there would have been no value trying it. Having said this, I didn't need any of the extra Morphine I had been taking on a daily basis for breakthrough pain. In fact, I didn't take any 'extra' medication at all during the trial.

Needless to say, I was very pleased with the results. Fortunately, the doctors agreed and decided I could go on to have the full system implanted. Fantastic news. The only downside was that I had to let them remove the trial wire and I would have to wait around three months before being able to return for the full operation.

The process was not the most pleasant in the world. I think I was in theatre for just under two hours and, obviously, I was awake throughout but the results were well worth it. I also had hope for the first time in a while. I knew that there was something that could help and I knew I could have it! I was well enough to drive myself home afterwards but did still have some discomfort in my back. I took a little time off work to get over this, but only a matter of days.

The next three months were frustrating. The pain level rose steadily to an extent that that it was not far off the worst it had ever been. Fortunately, Liverpool were true to their word and I was back down in three months (almost to the day).

This time I was admitted on the Sunday teatime. I was fed and watered and put to bed. There were three of us in the 'Implant Bay' and we would all have our surgery on the Monday morning. We were all nervous, but because we'd had the chance to try out the system, we were all very confident it would be worth it.

In the morning I was taken down for 'Back Marking'. This involved having a dye injected into the skin on my back so that the surgical staff knew where the electrodes were to be implanted. This was done using the X-Rays that were taken during the trial wire insertion. To be honest, this procedure wasn't very nice. I had an injection into my back, very close to my spine. It was uncomfortable and quite unpleasant, but by now the eye was on the prize!

Next came theatre. I don't actually remember getting that far. I spoke to the anaesthetist as he injected something into the cannula on the back of my hand, then I must have dropped off! I woke up in the recovery room but only opened my eyes long enough to tell the doctor my name. He told me how to work the 'Patient Controlled Analgesia' (a button that injects morphine into my arm when I press it) and let me go back to sleep. I have a vague memory of discomfort in my back but little else.

When I woke up on the ward, the story was a little different. My back hurt like hell. I had been warned that I would suffer 'significant discomfort'. Oh Boy, they weren't joking. However, I had lived with pain for a long time and I knew this would pass. It might last a few weeks but there was an end in sight. I had never been able to say this about the pain in my legs.

The Monday night was really bad but a lot of that was unique to me. There had been a mix up with my medication, so I actually ended up getting less than I usually take in a day, despite the patient controlled thingy. I think the other guys had a fairly OK night. We all had back pain but I was the worst for reasons that shouldn't really have happened. One of the guys went home the next day! There is no way I could have done this, but I suppose it shows that there is a scale of discomfort involved.

Over the next few days, things started to ease off a little. It did get better quite quickly, although it was still very sore. In the end, I went home on the Thursday. The fourth day after surgery. I felt ready to go home at this stage. There were a few restrictions on me and there was no way I could drive, but I did manage the four hour journey home.

My GP automatically signed me off work for six weeks. This is week four. I have been careful not to over do things and especially took advice not to stretch or twist if possible. Things are going very well. I'm still in some pain with my back but it is still getting better. My legs are far better and when they do start to hurt, the implant works! I would do it all again tomorrow, but I really hope I don't have to!