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

Sarah94 said:
I want to ask (this isn't aimed at anyone in particular), please, please don't turn Jenny's case into a football for the CCI debate
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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.
 
Milo said:
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...
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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.
 
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Kitty said:
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.
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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.
 
Dx Revision Watch said:
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.
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The threads were pretty active for a while after they were made pre-moderated. Premoderation enables moderators to deal with rule breaches before posts appear on the thread. We hope it also encourages members to think more carefully before they post about whether their post is within the rules.

It is up to members whether they choose to continue discussing the topic here or not, though with no new research information on the topic, perhaps members feel they have said all there is to say for now.
 
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.
 
chrisb said:
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.
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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.
 
chrisb said:
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.
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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).
 
Dx Revision Watch said:
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.
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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.
 
Kitty said:
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.
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The family had already put the link for their update out on Twitter on January 28:



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.
 
Milo said:
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.
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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?
 
chrisb said:
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?
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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.
 
chrisb said:
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.
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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.
 
Dolphin said:
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.
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That may have been a statement made specifically for that patient's personal case.
 
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