Hi and although I'm sorry for what has brought you here.
I'm wondering if it would be possible fory ou to get a second opinion, as while I know it can be very difficult to work out what the reason is for ongoing pain after surgery, it certainly is possible to investigate it fairly thoroughly and there are things which can be tried to see if they help with the pain.
I think as you're doing research, it's important to clarify that you almost certainly do not have Harrington rods. Harringtons have very seldom been used since the early 90s, because they were discovered to lead to certain problems which just do not occur with other rod systems. I'm pretty sure that Johns Hopkins would not have been using them as Dr Kostuik (who retired some time in the early 00s I believe) was very well known as a revision surgeon, doing the kind of surgery needed to fix the specific problems that coulld occur with Harrington rods. So please don't worry if you read anything about the potential problems with them as it really shouldn't apply to you
I'm not clear from you post as to who it is that is currently treating you in terms of pain relief, suggestion of rod removal etc. Bacscially, if this is a general ortho, or even a spine guy, they probably don't really know enough to adequately assess the problem. it really needs to be a scoliosis specialist who routinely deals with adults. It's definitely correct that the rods can be removed - it's a much less nasty surgery than the original to put them in, and recovery times from the actual surgery are very good. For some people, removal can be very effective. However, as you have a disngaged/broken rod, I think you really need to ensure you're properly assessed. There could be any of several things going on, and while almost all reasons for the ongoing pain can be treated, you need the right treatment of course.
I'm not sure about the e-stim - if it is being used as another name ofr TENS, then it's actually a very common treatment for pain, which works very well for a lot of people. However, I do also recall something called e-stim being used particularly by chiropractors, to try to provide a non-invasive treatment for scoliosis in order to avoid the need for surgery and hopefully even correct the curve. As far as I know, that never actually worked for that, and I don't actually know how it compared to TENS or whether it was used for the treatment of pain. There are people here who can share their experiences of using TENS though, and I'm sure they'll be along soon
One last thing, whihc is that physiotherapy is always worth trying. For many people, back pain can result from poor strength of the core muscles, and for people with spinal curvature and especially long fusions that can be even more the case, so it should certainly help you be a bit more comfortable
It's a shame we're on opposite sides of the pond, as I've also got a one year old son who is always glad to meet other kiddies!
Diagnosed at 15 with 50° curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.