This is a run-on from the last Diary; it was getting a little long to follow and now I have a treatment plan so I thought it would be best to cover the actual treament/results here, to avoid endless scrolling in the other post!
Yesterday was a bad day. My head was bad before I went to sleep and I woke up with it feeling just as bad. Nothing helped it and by nine that morning I was starting to think I’d have to go to A&E. I called my neurosurgeons secretary and spoke to her, as this is what the hydrocephalus nurse, Simon, had suggested I do if things got bad. I spoke to her and she told me to go to my GP if possible, given that my local A&E department has not been great at dealing with shunt problems before unless they were real emergencies, like obvious shunt infections. My doctor was great; Dad took me there and she wrote a letter to the hospital whilst we were with her, faxed it over and then called them on the phone. By two that afternoon she called back to say that I was now on the list to be brought in and I’d be hearing from the hospital in a couple of hours, which I did. They have scheduled me in for admittance next Wednesday. It’s a week away but they feel confident from my symptoms that it shouldn’t escalate into an emergency before that time. If it does, I’m to go to A&E and they’ll haul me in from there. I’m having ICP monitoring done first and then, depending on the results from that, a possible second surgery to correct whatever had gone wrong (if anything) with the shunt.
It’s a great relief; I feel I’ve done my bit. I’ve tried to avoid the surgery, have taken care of myself, tried a pressure adjustment, rested and taken it easy and now that none of that has made the slightest bit of difference and if anything, I’ve got worse, it’s time to bring the surgeons in! It’s funny how I was so determined after my thirty-ninth birthday to not have another surgery before my fortieth and now that it looks as though I’ll be having not one, but two surgeries before my fortieth, I’m not bothered in the slightest. That’s because of the work on the shunt project I’ve done this year. I’m so grateful to have access to excellent treatment (free treatment too!) and I have the knowledge that if my shunt has kicked the bucket, I’ll get a brand new one instantly, that it makes any inconvenience aspect pale into insignificance. If anything it’s strengthened my resolve to get back on track with the project as soon as I am well again.
Codman UK contacted me yesterday to say that they hadn’t given up or forgotten but they were now being challenged about the ethics of donating expired equipment to be sent overseas. Tim Coyne, the guy I am dealing with at Codman, feels the same frustration that I do but is determined to see it through. That’s why I feel relaxed about it now; we’re on the same page so it will get done, I know it. But when I get better there is a bigger issue to address; the restricting rules and guidelines which are preventing equipment to be donated and which are effectively contributing to the high death rates overseas need to be looked at and (hopefully) relaxed so donation is a viable option for hospitals, not something staff could get fired for if they participate. But I’ll worry about that when I’m better. For now, I have a date and I have some hope of finding out just exactly what my shunt thinks it’s been playing at all these weeks! That’ll do me for now.