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

I don't have the URL for the YouTube video to hand, but wasn't Dr Van Elzakker advising caution last year around CCI surgical interventions in that presentation - or am I confusing him with another presenter?

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Edited to insert URL for YouTube for Dr Van Elzakker and Dr Nancy Klimas discussing CCI interventions at last year's Invest in ME Conference:

https://www.youtube.com/watch?v=j2UoegoyKzc

 

I think he was but I was surprised even then that he seemed to be taking the thing seriously to some extent.

 

I noticed a more open approach in the Q&A session with @Andy a few months back, @Dx Revision Watch

 

Thanks, @Rain, I had not seen that Q & A. (I've now edited in the URL for the 2019 Invest in ME Conference YouTube where Dr Van Elzakker and Dr Nancy Klimas are discussing CCI stuff.)

 

I find VanElzakker's statement that he is "watching the FB group" very surprising. To the best of my knowledge, members of these groups are not informed that he is watching. I wish he would elaborate on this. @JenB could you comment please?

 

My understanding is that the various Facebook groups around CCI, created and administered by Jen Brea, are operated as private groups and the posts on these groups are not visible to non members.

Possibly Dr VanElzakker means he is a member, as an observer only, and does not participate in posting, himself. But clarity would be welcomed as I don't understand, either, how he can be aware of what is being posted on a private FB group, if not a member, himself.

 

vEDS is not a designer diagnosis. It is a horrible, testable, rare genetic mutation that puts you at risk of sudden death and reduces your life expectancy to 48 years.

CCI is not a designer diagnosis. It was the reason I had dysautonomia, intracranial hypertension and eventually, stopped breathing.

MCAS is not a designer diagnosis. It is a diagnosis that I continue to have to this day and that has huge global effects on my life but is thankfully well-managed through careful avoidance of triggers and, when necessary, IV drugs.

 

He is not in any FB groups I manage, as far as I am aware.

 

It is really important to remember that this “fad” is old news (15-20 years old) in the EDS community. Moreover, neurosurgeons have been doing fusions for craniocervical instability since the 1960s. Whatever one thinks about doing fusions in vEDS, the fact remains that Jenny also had a Chiari malformation. This gets forgotten in part because there is much more attention paid to CCI. It has become a synecdoche for a number of different diagnoses. I don’t think that is helpful.

This is a risky surgery for anyone, especially complex/high-risk cases, and should be (and in my experience is always) a last resort. I am heartbroken for Jenny but remain hopeful that she can make significant improvements once her medical team is able to more fully examine her case.

 

An interesting response. Interesting for what it omits. Is it intended to suggest that ME/CFS/AAI/PLTS are "designer or fashion diagnoses"? One presumes not.

 

I didn't read @Mij as suggesting that vEDS or CCI or MCAS was a designer diagnosis, but rather that the endless strings of multiple diagnoses seems to be a current trend.

I am curious as to which ME symptoms are not included in their other diagnois, be it EDS or CCI or MCAS, thus making an ME diagnosis appropriate and relevant.

Certainly some patients seem to receive an ME diagnosis initially, but retain it when a more appropriate diagnosis is made. I've even seen an EDS patient advocating exercise for ME patients because it helped them (as they were once diagnosed with ME).

 

Well, if that is the case I am still left confused. Given that the “trifecta” of EDS/POTS/MCAS is pretty well-established in clinical EDS land and given that the “neurosurgical complications” are also pretty well-established, it is not uncommon to have multiple diagnoses, conditional on having a EDS or another connective tissue disorder. And that’s not even going into abdominal cavity, heart or hip stuff...people with EDS generally have multiple things wrong with them. It’s the nature of the beast and is actually a part of the diagnosis.

Re: exercise, that does seem to be a problem in some EDS groups, that they can be very pro-exercise. I worry about the EDS patients who experience PEM but don’t know it yet. When I have spoken to some EDS patients with dual diagnoses of ME & EDS they have said they tend to stay away from those EDS groups that can have a “no pain no gain”
mentality and gravitate toward ME groups where symptoms and experiences are similar/more relatable.

I imagine it’s not that different from POTS or fibro. Some people with these diagnoses do improve with exercise and PT is a bedrock of EDS care. Obviously exercise and PT can be difficult to impossible if you also have PEM. For those who do not experience PEM but may have some of the other symptoms of POTS or fibro, say, that overlap with ME symptoms, there can be a significant disconnect.

When should a person no longer qualify for an ME diagnosis even if they meet the diagnostic criteria? That is an interesting question and I don’t think we know the answer yet.

 

Oh clearly she wasn't saying that. Presumably she didn't have the energy or time to write a sentence about each of those.

 

What is your understanding of Dr VanElzakker's statement:

"Would love to meet others. & would love to talk w patients beyond just watching the FB group."

 

But unless you are party to more recent information, the family has stated, publicly:

"The trouble is, the supine MRI and CT venogram aren’t showing anything wrong with the operation, according to the neurosurgeon and radiographer. So Jenny has had to fight hard, while extremely ill and incapacitated after the operation, to try to get them to believe/understand that something is wrong. Unsuccessfully. The neurosurgeon is happy with his work, according to what he can see on the scans, and is convinced he has performed the operation perfectly.

"They have sent Jenny home from hospital, saying that there’s nothing more that they can do for her."

 

It depends what you mean by fad - yes, the surgery has been around for a while. It is the sudden attention to it that may appear as a fad to some.

I deliberately didn't refer to any one individual in my post because it wasn't aimed at Jenny or any one else in particular. For the last 20 + years I have had a constant stream of people ensuring me that treatment x or y cured them. 6 months or a year or two later they would pop up again, this time telling me all about treatment z. THE cure. Again.

There is no doubt they intended well. Equally, there is no doubt they are still ill. Yet, they have actively encouraged others to peruse the same treatment without caution or caveat. Without taking the time to think that about the possibility that an improvement for several months might not yet be a cure. Simply a remission that may or may not have been precipitated by the treatment, which may or may or may not affect others in the same way.

I have had friends sobbing because they have gotten into significant debt spending money on treatments that haven't helped. I have had friends go from mild to bedbound, extremely severely affected. People don't always come back from that.

i have no problem having a conversation about anything with anyone. My problem is when those discussing issues aren't careful to discuss matters responsibly. Warning that a remission can seem like a cure, not every one will react the same way to the same treatment etc.. Also being clear about one's own level of expertise in the matter.

 

Jen, please stop putting out statements that you are not qualified to make. It is accepted by the vast majority of medical practitioners who have dealings in this area that there is no relation between any of these diagnoses. Neurologist-surgical complications of anything other than EDS are not established. I have spent the last few months canvassing opinion within the medical profession and I have found nobody who is not making money out putting out these ideas who thinks they have any basis. It is a scam and very widely recognised as such within the profession.

 

One cannot afford imprecision when proffering advice. Certainly the recipient cannot afford imprecision.

 

Jen, statements like these makes it seem like you take for granted that everyone has the same kind of follow up-possibilities as you had. Would you advice against going trough with the operation, even if medically indicated, unless you live nearby and/or have the means to stay close to the specialist for the following year?

It seems like crowdfunding people do not count in complications in their goal amount - often there is need of a second crowdfunding if something does not go as planned...

I know you have good insurance, but do you know the total amount of the costs during your first year?