My AVM consultant advised that there was nothing more they could do for me at the moment. There might be a drug trial in the future, but this would only be after they have both gained approval to test it and have tried it on simple cases first.
Then the next day I get even more exciting news - the pain clinic can do nothing for me either.
As you can imagine I am really bummed out with both specialties being unable to help me anymore. I am super scared that the CRPS will continue to spread, but now I have no one to help. Instead I have been advised to take a pain management course to learn to cope with this now permanent disability.
I can only imagine your frustration, and my thoughts are with you. Is there an opportunity to seek a second opinion? If you have your scans there may be opportunity to do it, at least in the initial instance, without an in person visit. Based on the news you received, I would certainly consider that. It may provide another option, or at very least confirm what you have been told. Either way for me personally, I would want to know both for certain. Once again, my thoughts are with you. John
I’ve had a look round for resources – as Ben’s Friends we have a CRPS community – but, so far as I can tell, there’s almost nobody in that community or not at all active – so I can’t recommend that.
I know there are others here dealing with similar, so you might use the to look for others’ stories to wander into. And do that pain management course.
I remembered something that I had listened to on one of our radio stations in the UK (Radio 4, ‘Room 5’, by Helena Merriman). This is a series of broadcasted stories of people who found themselves falling into the category of being a ‘medical mystery’ and who have nevertheless found some hope. This particular story was about a young woman who developed complex regional pain syndrome after a routine knee operation. She described the pain as being impossible to put into words and her leg became immobile and swollen. It then happened that she was noticed on her hospital ward by a pain consultant Dr Deepak Ravindran. He treated her with a specific integrated protocol of medication ( included ketamine apparently!) and targeted physiotherapy that would also aim to train her nervous system and immune system to reset and attain a more appropriate balance so that she could walk again.
I know everyone’s medical condition is different but it was heart wrenching to read your message and I just wanted to let you know that there is always some hope somewhere. I googled this consultant and he has even written a book (might get it for myself too) which could be of some support. I also wondered if maybe your existing consultants could be persuaded or at least interested in liaising with this UK consultant and working with him remotely to get you the help that you absolutely deserve? Or at least enable you to get a second opinion?
to look for others’ stories to wander into. And do that pain management course.