And there are other treatments. Prp and possibly fsm are two I know of in addition to the support of physical therapy. Prp may not be effective unless deep enough in the spine that only trained doctors like anesthesiologists can get to safely with guided ultrasound. Even then, results vary. This has been said on this thread but I'll say it again for people to know. Regenexx is a company(?) and network of doctors that zeroed in on regenerative medicine for cervical instability, among other things. Dr centeno created the picl procedure, which he considers the last line in the regenerative medicine sequence of procedures that they do, before he recommends opting for surgery if necessary. It's prp in locations one would need general anesthesia to get to. If I remember correctly. He's pretty anti fusion and discusses the risks but thinks it's necessary sometimes. First line would be prolotherapy, if that doesn't work well enough then prp without general anesthesia then picl. All using MRI and other imaging to see exactly where instability is and treating accordingly. And combined with good physical therapy I believe they suggest. I have no personal experience with him but I do with one of the doctors in his network and I might pursue prp in this way at some point. That doctor did not suggest prolotherapy first, just prp first. He also, even though is in the network and knows how to treat cci with prp, was not as knowledgeable as I'd thought, for example he didn't know the possibility of tethered cord along with it and I'm almost sure Dr centeno does. Could be wrong. Quite a serious issue and I'm not clear if these procedures could lead tethered cord to be symptomatic the same way a fusion can, but it's something I will ask about at some point. This doctor I saw seemed pretty knowledgeable but him not knowing the connection to tethered cord scared me. My neurologist (different person) who speaks to Dr b is aware of the picl and supports it and wants to send a doctor to learn it. I watched a webinar centeno did that Jeff posted,
Here. Seems Jeff did a picl to try to resolve any last remaining issues after his two surgeries. I don't remember what he did it for, you'll have to ask him.
So I hope this serves people well. On the regenexx website there's the list of doctors in the network around the us (and other countries perhaps?) and some do cervical injections. Shopping around and checking out options is good because my guess is some charge a lot more than others for these prp procedures, although the picl done in Colorado is whatever price it is and probably very expensive. I know someone on this thread did one picl and didn't benefit. On webinar he says this happens but not often. He states some percentages of how many of his patients recover a certain amount with each stage. And that fusion surgery makes it much harder to benefit from the picl. I think he has done some really good work and this issue has clearly been in people's awareness before the mecfs community. Especially eds people I'm gathering. He writes on his blog about various aspects of ccj issues diagnosis and treatment. For example
This. Someone asked a really good question about MRIs in the comments which was answered.
So this is a really promising area and we can hope the cost of these things will go down over time. More things may be in the pipeline for ccj issue treatments in coming years. I'm exploring how frequency specific microcurrent can help. The thing Malory tomaro wrote about in her blog about how she healed these issues. The doctor who I'm going to do fsm with (different person than the previous mentioned two doctors I see) uses it for people with eds among other things and has lectured on ccj issues and knows me/cfs. I do believe surgery is not the best choice for many. But... There are complex factors and varying severity and we should all decide for ourselves with guidance from the surgeon and other docs and peers. Just know there are options and will be more.
