dreams and nightmares

After a year and a half of waiting the day for me to finally have the spinal cord stimulation had arrived. I was nervous, terrified but so hopeful all at the same time, I didn't know what to expect or how it would feel. For the first stage of the operation, I was awake, they threaded the wire up my spine, which I could feel but was bearable as I had been given local anesthetic in my back.  When they thought the wire with electrodes on, was in the right place they connected it to a device outside my back, and started to send signals through the wire, as they turned it up I started to feel a slight tingling in my leg. After slightly moving the wire about they got it in the right place and started again to turn it up, they got to a point where each time they turned it up I got less and less pain, and then they got it just right, I burst into tears because I instantly had about 60% relief from the pain and just felt this tingling instead. They tunneled everything into to place ready for when I would have the next stage. I was giving the remote to control the stimulation and couldn't believe I finally had relief and control, it felt like I was dreaming. I was very sore from where they operated but that was just surgical pain and I knew it would go away in time. My consultant came every day to see me to check it was still working and I was happy with it, I was then told that to test the success of it I had to turn it off for as long as possible. When I finally felt brave enough to turn it off, I pressed the button on the remote and it went off, all the pain came rushing back, I felt so sick, dizzy, I was sweating and went really pale and couldn't turn it back on quick enough. That just proved how much it worked.

A week after the first stage they decided to put the battery implant in. I was kept in and they did it all in one go because I still had the open sore on my leg so they wanted to do it as soon as possible to try and keep infection away. I was asleep for the second stage and they tunneled everything that was on the outside of my body to the inside. The battery implant was put in the side on my stomach. In total I have 3 scars from this procedure. I am always really poorly after anesthetic and I was this time but I couldn't wait to get back to the ward and turn the implant on.  2 days later I was allowed to go home. I was really sore and could hardly move but felt better in myself already due to having the relief from the CRPS and I was getting between 4 and 7 hours sleep instead of 1 hour. 10 days after been at home I had to have my stitches taken out by the local GP. They were taken out, however 2 hours after having them out, the scar on my stomach was starting to open up, I went to the doctors straight away and they steri-stripped it and I was put on antibiotics. We rang the hospital straight away because we had always been told that if I had any problems, we were to ring them straight away. The doctor my mum spoke to said that he had spoken to my consultant and he was happy with what he had done and that he put me on antibiotics for precaution. A few days later about 10pm I went to move across in bed and felt something wasn't right with my scar, so I looked at it and the dressing on it was just filling with blood and then blood starting pouring from the dressing and the dressing fell off. My scar kept bleeding and we kept pressing dressings on it but blood was filling them instantly, and after about 15 minutes it stopped. My mum rang the hospital and they said to ring in morning and maybe go in then, minutes after my mum came off the phone it started bleeding again, just as bad, I had never seen this much blood before and was quite scared. We rang the hospital back because there was no way I could wait till morning. It continued to keep bleeding for 10 minutes a time on the way to hospital. I got to the hospital at midnight, and the doctor on duty decided that it needed re-stitching immediately. I went down to theater at 2am and had it done under local anesthetic. They swabbed the wound to check for infection, and a couple days later it came back clear and that I could go home. However before I went home my consultant came and spoke to me and asked what had happened when my stitches came out, so I told him and he said that he had never spoken to a doctor and that I should of gone straight in the day we noticed the scar was opening!!!

After been back home for 2 days, my scar started bleeding again, not as bad as before, but it was clear something still wasn't right. I got re-admitted to hospital and unfortunately my consultant was on holiday so the other consultant was keeping an eye on what was going on. A week after been admitted, they decided to do a wash out of the scar, which involved opening the scar and washing out the cavity where the battery was and swabbing the scar again. This caused severe discomfort and was so scared of what was going to happen if this didn't work. The swab result came back clear again, the doctors couldn't understand why this was happening.  Another week later and I started to feel unwell, the scar was hurting more and more each day, I was feeling sick and going hot and cold. My consultant came back off holiday and said that he wanted to do another wash out so he could look at the battery cavity for himself and do a real thorough job. I went to theater for the wash out and when I came round, I couldn't move at all and I was like this for 3 days, this was due to how thorough he had been, had had taken the battery out cleaned and scraped the entire cavity and put the battery back in, another swab was also taken. 3 days later I was told the swab result came back clear yet again, I was relieved but still couldn't understand what was going on. At night, a nurse told me that they had found an infection, and that I was been put on more antibiotics than i was already on. I was didn't really know what was happening and then my consultant came and i thought he came to say what was going on but he hadn't heard about the infection so he read my notes and then sat and told me that, it wasn't good news, the type of infection I had was one that buries its self and that it was more than likely already on the battery. I asked what the next step would be, and he said that if it got no better within 7 days, the battery would be removed and that he thought it was already too late to save the battery. This broke my heart, I was so upset, I couldn't bare thinking about having the battery taken out and losing the relief I had. As each day when I went I felt more poorly and knew this was going end well. It was Friday night and my consultant came and saw and said he wanted to wait no longer and the battery had to be removed as soon as possible, this was the worst feeling. It was the day of the operation and I was just couldn't believe it was happening, I went to theater with 70% and woke up with no relief and all my pain back. It was awful and I was in such a state. My mum and her partner were there but I couldn't talk to any, the pain was just taking over and there was nothing I could do. I felt the worst I have ever felt in my life, but the next day my mum came and told me that I could have a puppy, I had wanted one for moths but was waiting till my 21^st birthday, but mum said it was then when I need one and I felt like I had something to focus on. 5 days later I was discharged from hospital, by my consultant came and spoke to me and said I have to wait 3 months but I could have the battery put back in, 3 months seems such a long time when I am in this much pain but it was a positive knowing I will get the relief back.

It was thought that my the type of infection I had, was caused from the sore and that’s the reason it never healed but once the implant was put in the infection moved to that, which allowed my sore to heal and it has stayed healed.

It now the end of November and I am having my battery put back in, in 10 days time, I have never been so excited to have an operation. These last 3 months have been tough but thanks to my family and friends, I have gotten through it and kept smiling and going. One thing that has helped so much is my puppy, having something to focus on and look after him each day has made me have to keep going.

It took me a while to write this blog because it’s been such a tough time and so emotional but I am strong and I am going to win this and get my life back.