SCS Revisited, and Downhill Again
On April 29th I had surgery to replace one of the leads in my Spinal Cord Stimulator. The surgery was something of an ordeal. Because you have to be able to give feedback on whether the leads for the stimulator are in the correct place to give pain relief, you have to be awake during surgery. I was aware of severe pain through my back and left leg during surgery, but I couldn't relay the message to the doctor. When I woke up after the second part of the surgery the pain was numbed a bit, but returned as the pain relief wore off. When I tried to get up after surgery I found that I had very severe pain. A couple of days after surgery I started to lose strength and sensation in my leg. My doctor was called and we went through the full gamut of CT scans to be sure that I hadn't formed a blood clot in my spine, as I had bled heavily during surgery.
All of this meant that instead of the usual three days in hospital, I was in for almost a week. Upside - that despite the pain stirred up by the surgery I finally had a functional SCS again. We had opted to put a different type of lead in this time - my old lead, and the lead covering my right leg - are called percutaneous leads. They are small and thin, almost like wires. Previously the only other option would have been a plate electrode, something that requires more invasive surgery, usually removal of a small amount of bone to site the lead and so a whole host of extra risks, extra recovery time and so on. What I have instead is something in between. Less invasive than a plate, better coverage than a percutaneous lead
That seems to have marked the end of my good run. A few weeks after my SCS surgery, I noticed that my legs were hot, red and more painful than usual. One of the risks of poor circulation, and something a lot of CRPS patients seem to be prone to, is cellulitis. Sure enough, this is what I'd developed, and quite badly. Over a weekend I went from red legs, to blisters, to open, oozing sores. And another visit to hospital, this time for IV antibiotics. I have have horrible veins... if they can be found at all they wobble, they collapse, and doctors and nurses tend to have a really hard time either getting blood from me or inserting IV catheters. This time was no exception and my doctor ordered a PICC (peripherally inserted central catheter). The PICC goes in your upper arm, inserted under local anaesthetic and fluoroscopy ('real time x-ray') guidance. Should have been easy, except that the doctor putting it in hit the nerves in my arm while he was injecting local anaesthetic. Not once, but twice. As soon as I felt that needle, and the pain firing down my hand and arm, I knew what I was in for. My arms had been reasonably settled for a while, but within a very short time my hand began to turn blue and cold, and extremely painful. It began to swell, and this began to spread up my arm.
Although my previous ketamine infusion in January had made me quite sick, and not been a great help with my pain, we decided to try another infusion to see if it would help to reduce the reappearance of the CRPS signs in my arm. This turned out to be a nightmare and led to me making a complaint against the hospital concerned. I don't cope well with strangers at the best of times, I don't cope well with hospital at the best of times, and when I've got ketamine in my system this seems to be amplified. I'd requested my own room but somehow ended up in a room with three other women. On the Thursday afternoon the other three women had visitors, the room was busy and noisy and I started to feel out of control, very spaced out and started to panic. My nurse pretty well ignored me but eventually the Unit Manager turned up and told me she was doing what she could. I'd asked if I could be moved somewhere temporarily, just given somewhere quiet to sit and she took me to the patient lounge. And left me there. On my own, in the dark. For three hours. No way of contacting a nurse, of getting help if I needed. I saw my nurse twice, once as she brought me evening medications, once when she changed the IV bag. I tried to find my way back to my room eventually - on crutches, and trying to manoeuvre an IV pole. Usually I only use crutches for very short distances because with my dystonia I walk almost on the tops of my feet. When I finally made it back to my room the nurse just looked me up and down and said "Oh, you're back. Are you feeling better now?" in a tone that suggested I was a toddler having a temper tantrum. When I asked for pain medication, I was refused.
On the Friday, I could feel myself slipping into the same dysphoric state as before and I asked the nurse to contact my doctor to see if it was possible to stop the infusion because I was feeling sick, distressed and I'd had enough. I made the request repeatedly over about 3 1/2 hours and was refused. Things only changed when a friend of mine came to the hospital to visit me and found me sitting on my bed hiding under my blanket, incredibly distressed, shaking, sick and crying. She went to speak to the nurses on my behalf and only then did they back off and contact my doctor. Needless to say, I won't be returning to that hospital...