Through my final year of uni, my dystonia became worse and I was referred to another specialist for botox injections into the muscles of my lower leg. These were another nightmare. The injections were done while I was under an anaesthetic, but I woke to one of the most intense, burning pains I have known. It’s not often that I cry with pain, but this had me in tears. At least for all that pain it did provide some muscle relaxation; enough that I made some progress with physio and was able to have a brace made up for my lower leg to force my foot and ankle into a more normal position. Unfortunately, like all things, it was only short lasting. Instead of the 4-6 months we’d hoped for, I had barely 6 weeks before the effects had worn off.
At that stage, my doctor started talking about an intrathecal pump – a device that delivers drug directly into the spinal fluid. Rather than go through this procedure I decided to try the botox again, with additional pain relief and using local anaesthetic as well. Although the pain was controlled this time, it did nothing to relax the muscles of my leg and by this stage the only way I could walk was to take my weight on the top of my foot.
This left me having to seriously consider the pump, but with only a few months of uni left to go I decided to delay the trials until after I’d graduated. I have no idea how I made it through those final few months – again, without the support of a few good friends, I don’t think it would have happened. Three days after graduation I was back in hospital – this time for an intrathecal baclofen trial. Baclofen is a muscle relaxant that I’d been taking in tablet form for some time but was no longer effective for me. We were hoping that by delivering it straight to where it is needed – via the pump – I would have a better result. It took a couple of doses of increasing concentration (and three or four lumbar punctures in just a few days) to start getting a result, but a result that made it worthwhile considering the pump.
I saw a neurosurgeon in January 2008 to have an assessment for the pump implantation and was scheduled for surgery a couple of weeks later. Surgery wasn’t to be; the night before, I had a bad allergic reaction to some skin cream and ended up with large open sores all over my legs. The surgeon was concerned about the infection risk, so insisted on surgery being postponed for a couple of weeks. Again, it wasn’t to be. The day before surgery, we were visiting relatives for lunch and I got bad food poisoning. Again, it was postponed – this time until April.
The pump, once it was in and a dose established, helped a lot. I had fewer spasms, the dystonia was reduced, and I was able to have a new brace made that allowed me to weight bear again. Around this time though, I started to get some pain and minor CRPS symptoms in my left foot. Earlier in the year I had started to get a lot of nausea and vomiting, and around this time that became much more severe. I was hospitalised for hypokalaemia due to the vomiting, and my weight began to drop quite dramatically. I was diagnosed with gastroparesis, which occurs when stomach motility drops and food doesn’t exit the stomach properly. I was also having some minor heart problems. I had an extremely high resting heart rate that was rising higher still with any exertion, pain or stress.
During this time, my left leg also was getting worse. I was trying to work – driving an hour each way, 2-3 days a week – and could feel myself sliding. My specialist initially tried a ketamine infusion to treat the developing CRPS in my left leg, but it didn’t go well. Soon after starting the infusion, my heart rate became extremely high, I couldn’t breathe properly, and the infusion was stopped. After the failed ketamine infusion, we decided to try putting a second lead in for my spinal cord stimulator. For the first few days it worked well. But a big problem with the stimulator is that activity and movement has to be extremely limited after the surgery so that the leads can heal into place. For me, vomiting constantly with my gastroparesis, something was bound to move, and the new lead migrated within a very short period of time. I started to get searing back pain, especially when the lead was used and was told that I would have to go in again for another lead revision. I usually get on well with my doctor, but I hated him for those few months. I was sick of hospitals, sick of procedures, sick of the pain – sometimes so severe that I found myself considering suicide as a way to escape it. I was getting more and more depressed and I had him trying to push me back into surgery, seemingly without any ability to understand that I was at the end of my tether. This is one problem that I've found – even the kindest and best intentioned of doctors have rarely experienced severe pain, never mind severe chronic pain, for themselves – so they do not always have - or maybe don't convey - the empathy that perhaps they need to. I think mine has grown better over time.
Signs of swelling in my left foot and ankle (August 2008) to full-blown CRPS involvement by Dec '08/Jan '09