CRPS scs

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My Journey

Following an accident in 2012, I developed CRPS in my left leg. However, it took 26 months for a diagnosis to be made, during which time I felt as though I was banging my head against the wall. Needless to say I had never heard of CRPS, but then again neither had anybody I spoke to.

Of course, both before and after my diagnosis, the internet became my main tool for information. It was a real eye opener just how many people with this terrible condition are misdiagnosed.

The pain was far in excess of anything I have ever experienced before in my life. Yes, in the past I have broken bones but nothing like this; it was off the scale. Of course, just like everybody else with CRPS my initial focus was a cure. I’ve tried everything that’s been offered: medication, rehabilitation, hydrotherapy, the list goes on. In the end I was having terrible thoughts; I just wanted rid of my leg. I even raised the issue of amputation with those treating me and it was then that spinal cord stimulation was discussed. I had no hesitation in agreeing to it. That was 2 years ago but it was only the beginning of the pathway towards having the device implanted. This pathway is all part of the National Institute of Clinical Excellence guidelines followed by the NHS.

There were many appointments. As an introduction I saw a nurse to discuss the trial and the procedure. After having several further check-ups and an x-ray, I was referred to a psychological therapist to make sure I wasn’t suicidal and that my mind was stable. I’m pleased to say that I passed!

However, just when I felt I was getting somewhere at last, between May and December 2016, I was hospitalised 10 times as a result of developing Subcutaneous Tissue Emphysema and Non-Necrotising Fasciitis. I was lucky. As the Subcutaneous Tissue Emphysema was nearly full body, I could have lost my life. The doctors were perplexed and said they hadn’t seen anything like it before. I’ve been told I’m now a case study!

I underwent surgery to my leg for the Emphysema, which was dreadful. Afterwards, my leg was in a vacuum pack for 5 weeks whilst it healed and the pain when they removed it was excruciating.

The road to recovery from surgery was slow and long. Of course, all I then had to worry about was the CRPS! As a result of all this I was getting extremely worried that my SCS trial would not take place. However, in February 2017 I was given the green light to proceed and I was booked in to have the trial a week later.

I had heard a lot of stories about SCS, some good and some bad, but as far as I was concerned any degree of pain relief had to be a bonus.

Following the trial I was very sore which I expected. However, I kept a diary for 7 days and this showed 70% pain relief.

One thing that I had done with a view to helping other people in my position was to return to studying and during the period between removal of the trial stimulator and the permanent procedure, I successfully qualified as a Certified Pain Management Practitioner.

August 16th 2017 was the big day – the date for my permanent implant. The device I was fitted with was the Nevro Senza HF10, which has been designed to provide more pain relief without the uncomfortable buzzing or tingling of paresthesia. I call it the stealth model! As expected, I was initially very sore around my buttock where the battery pack has been implanted.

How is it now?

Well I’m now 6 weeks down the road and I am not pain free. However, I remind myself that was never going to be the case. Whilst the degree of pain relief varies, I would say that on average it is about 50%. I can now plan my days a lot better, whereas before I could just about get out of bed. I’m looking to start reducing my medication, which has to be done slowly. I’ve also had some fantastic news recently, that my local GP surgery would like me to help them out, part-time and voluntarily, as a Pain Practitioner.

In order to reach out to others suffering pain and to provide information and support, I have set up a Facebook page, Big Steps Little Feet/Chronic Pain Info. Please do get in touch!