queen It's not too long since I have been where you are, in the thick of the stress of it, trying desperately to get the hcp to talk together and to listen and do the right thing. I was very fortunate that i had some amazing hands to hold mine through it on MN, and that is why I love this thread, as I had so many threads going 'ARGH!' and many of the same people coming and giving me the best advice. I swear I would never have got through it without just being left without the drive of others' experiences to get me through it. It's strange this new feeling of mine, I think honestly my brain, my rational thoughts and my emotions just simply could not/cannot cope with the treacle any more. After going to the neuro who said 'go away' and the pain clinic who said 'go away' and my GP who said 'they are wrong, we need to review this' and it meant going back and in effect starting again, I just could not face it. Maybe it's a good thing as I feel better for it. Maybe it's even contributing to a lower pain level? Who knows.
But, for now, you are still in the midst of it, and I hate to hear that lots of hcp just don't follow the simple routes of treatment. But keep persevering. I would say it may be worth complaining, but that very much depends on what you want to get from it. And maybe it's worth waiting to complain until you have got to see the neuro, just because it adds another layer of stress to the whole thing. I think there are time limits for formal complaints but they are quite long. Might be worth thinking of changing GP surgery if you don't get the support you need there? You really do need your GP onside to help you through this, they need to be your advocate as they are your access routes to other treatment options. My GP was very reticent about support for a long time, and even when he realised I had a prolapse he was much more tea and sympathy than practical ideas and I had to guide him, but he is very onboard now, it took time though, and lots of tears, for him to see how much this affects me. He is very keen for me to have a fusion, he thinks this is the logical route for my personal issue and as such as keen to ensure I seek the second opinion, but even with his support it's not that easy as he has not gone through the correct route of referral.
RE: central prolapse. I had a central prolapse of L5/S1 and yes, that little bit of disc can, unbelievably cause a huge amount of pain. I didn't know about the increased risk of CE, but did know that a central prolapse means you are much more likely to get bilateral nerve pain as it can affect both left and right sciatic nerve routes. My surgeon had trouble accessing the whole of the prolapse due to the centralness of it, as they often have to do a laminectomy (remove a piece of the lamina) to access it. He swept from the left into the central, but was unable to get to the right side. He didn't want to do a laminectomy on both sides as he said it would make the whole area too unstable and would likely need fusing, but I am sure that is because there was/is already an instability in the vertebrae. I am not sure, but think the lamina grows back in time? Might be worth asking the surgeon if he plans to complete a laminectomy as I didn't know until the day of surgery that this was going to happen.
maizie funnily my boss in my final supervision (he departs for higher echelons now) said that one of my strengths was my analytical skills, that I don't just seek 'what/when' but also 'why/how' and 'what can be done?', something I never really knew! Your DS's school is now on board with supporting your DS aren't they? That's now sorted and he can stay in mainstream school? Are there going to be additional provisions in class to support him? In DDs school there are a few children with a variety of SN, some with learning needs, some have physical needs, two have a mixture of both, and they are extremely supportive and family like in their support, teachers, children, parents. I went to DSs parents evening this week, to have a meeting about September and the Head was very keen to empart that school is not just about numbers and letters, they re important but it's about the whole aspect of life, socialisation skills, wanting to learn, enjoying learning, caring for others, acceptance, and they place huge emphasis and praise/certificates for nurturing others, and as such they don't mind (and nor do I) not being 'outstanding' - they didn't achieve outstanding as they didn't have strong enough provisions for KS1 SATS exams - I like that about the school. I hope he gets that kind of support in his school.