The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

It is still important to put this information out there though, good and bad, without judgement. There are risks associated with any surgery, and this particular surgery makes it riskier from co-morbidities, amongst other things.

Best wishes to Jenny and family.

 

Indeed. The four or five previously very active threads on CCI related topics have become noticeably quiet since the introduction of pre-moderation, although discussion does continue on other platforms.

I would not want to see appeals for not turning Jenny's case into "a football for the CCI debate" constrain debate of the continuing general concerns around these surgeries, and especially in the context of pre-existing diagnoses of ME.

 

I agree, but the patient and her family should be allowed to write it, since it's their story. They've already posted in detail on the blog, and may comment again in more widely-read forums when they feel ready.

 

But no-one here has posted details about Jenny's operation and its outcome, nor discussed it - only the link for the family's update has been posted and expressions of concern and good wishes.

 

I suspect that there is a rather different topic to be discussed, in the way in which private doctors deal with matters when the outcome of procedure is not that which was expected. People contemplating undergoing this procedure should pay close attention.

 

The denial is not just unfair but also prevents learning from failure. Someone who doesn't admit that the treatment went wrong may repeat the same mistakes again with another patient.

 

I’m so sorry to hear about what happened to Jenny

 

I'm very sorry to hear about Jenny and that she felt 'embarrassed' from the outcome. Why is that? This CCI social media roadshow being narrated by certain people with zero medical background on twitter is embarrassing, and totally inappropriate.

 

Yes. I think it is possible to report them to the GMC (General Medical Council), however I do not know how it works in practice and of course Jenny’s family will be going through an unbearably difficult time at the moment, so in all likelihood the last thing they are thinking about. Even if doctors were reported, I’m not sure how that will help Jenny’s current situation and it probably doesn’t translate into any medical help.

I really hope there is some medical help that can help her.

From what I have seen (although not been very involved in ME forums recently), at least one, or a few doctors, are operating and will be operating privately on patients in the UK, who have a prior ME diagnosis as well. I hope at some point, the names of these doctors become common knowledge - regardless of whether outcomes are good or bad, so the community and people contemplating surgery are aware of what has happened to others. (Please know I’m not directing this at any particular person, but to the general community).

 

I agree, everyone here's been very respectful. I was responding to the thought about letting people know about this dreadful outcome; what I meant was that, if the family wants to put the word out in open forums such as social media, they should do so themselves. The story would then become public property, but at least they've made the decision to post it where it'll be discussed widely, and had the chance to frame it in their own words. When something like this happens, it's so easy for the people affected to lose all power over their own story.

I always have trouble making my intention clear, so apologies for that – I wasn't trying to suggest that anyone here had said anything inappropriate.

 

The family had already put the link for their update out on Twitter on January 28:

https://twitter.com/user/status/1222238374762819584


which has garnered 49 comments (which they can't control). I really don't see why they would be uncomfortable with the link to their update being posted here.

 

I think what i was pointing to is that reporting adverse events is an ethical thing to do when it comes to trialling any treatments, may they be sanctioned or not by the medical body.

Adverse events in this case of CCI surgery would be death, unsuccessful surgery, complications such as infection, paralysis, worsened condition, decreased head and neck mobility, just to name a few.

This is a matter of safety and inform those who are considering the surgery for themselves.

 

I don't think anyone here disagrees with you on that.

 

One wonders what reliance can be placed upon any figures for the safety of this procedure, or adverse events arising from it. I seem to recall seeing on one of the other threads figures suggesting the procedure was relatively safe. They seemed somewhat surprising. It would be helpful to know the criteria by which the safety of the procedure are judged and whether these take into account the patients views of the outcome.

On a general point it seems to be suggested that the post-operative scans show nothing which could account for the new symptoms. What was it about the preoperative ones which were supposed to account for those symptoms? Is not the attitude that all is well demonstrative of a refutation of the theory as to causation of the symptoms?

 

Are you referring to Jenny's case? If so, I don't think any of us know enough about her individual case to be able to comment on that.

 

I wasn't aware that we had any reliable figures, just various narratives.

 

I have a vague recollection that for another one of these patients (one that went to Spain?) it was mentioned that there was a 50% chance that it could lead to a fatality. And then the person did pass away. I'm not sure whether this was an operation that was different in some ways to what other people are getting.

 

That may have been a statement made specifically for that patient's personal case.