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

Sarah94 said:
Part of the Lightning Process is literally training people to say and believe that they're better, no matter how they actually feel.

So I'm not sure that that works as an analogy.
Click to expand...


It may not be so very different. I strongly suspect that people who have undergone the traction test will know that they only get an operation if they say they are better with traction.

The psychology of these things is always complex. And none of us is immune to these psychological pressures. I certainly am not.
 
Sarah94 said:
Part of the Lightning Process is literally training people to say and believe that they're better, no matter how they actually feel.

So I'm not sure that that works as an analogy.
Click to expand...

It does in terms of replying to comments on observations and following them. The reported improvements may not be real but reports are still observable. People can report improvements for a variety of reasons. They can also attribute improvements to things that are happening as they improve.

With any observations of improvement you need to take into account that ME is a variable condition and people do improve at times or get worse etc. So control groups are needed.

That is why proper research and trials are needed.

The question remains as to what the best bets for those trials (i.e. which are the most plausible and promising lines to explore).
 
Jonathan Edwards said:
It may not be so very different. I strongly suspect that people who have undergone the traction test will know that they only get an operation if they say they are better with traction.

The psychology of these things is always complex. And none of us is immune to these psychological pressures. I certainly am not.
Click to expand...

I was told by one of the surgeons that my supine measurements were “quite normal”, but if I felt any better under traction (what type of traction wasn’t specified though, or what kind of symptoms I should be looking at), then I could be booked in for an appointment and a consultation and would receive a diagnosis at the consultation.

Certainly a lot seems to hinge on response to traction and keeping a traction diary.

Edit: I chose not to do this due to possible harms as well as the fact I asked the surgeon to explain to me why exactly I needed to do this and on what basis, given my measurements were “ok“, but did not receive an adequate answer at all. I was not happy that traction was being used to assess... what exactly, and why? But that’s a question I think we would all like the answer to.
 
Last edited:
Jonathan Edwards said:
It may not be so very different. I strongly suspect that people who have undergone the traction test will know that they only get an operation if they say they are better with traction.

The psychology of these things is always complex. And none of us is immune to these psychological pressures. I certainly am not.
Click to expand...

And they have symptoms strongly suggestive of specific neurological deficits
And they have an abnormal clinical neurology exam
And they have abnormal imaging
And they have measurements that change during traction
And they have an abnormal ICP bolt test

Family history, signs of connective tissue disorder, etc., etc. also important

The gauntlet I ran to get this diagnosis is nothing like what it took to get an ME diagnosis, which was based mainly on the symptoms my doctor was asking about, ruling out a bunch of stuff, and various blood tests. The CPET was helpful. None of these, however, were objective evidence of pathology.

Comparing this to the Lightning Process is...a leap.
 
lunarainbows said:
I was told by one of the surgeons that my supine measurements were “quite normal”, but if I felt any better under traction (what type of traction wasn’t specified though, or what kind of symptoms I should be looking at), then I could be booked in for an appointment and a consultation and would receive a diagnosis at the consultation.

Certainly a lot seems to hinge on response to traction and keeping a traction diary.

Edit: I chose not to do this due to possible harms as well as the fact I asked the surgeon to explain to me why exactly I needed to do this and on what basis, given my measurements were “ok“, but did not receive an adequate answer at all. I was not happy that traction was being used to assess... what exactly, and why? But that’s a question I think we would all like the answer to.
Click to expand...


Sounds like you made the right choice for your care!
 
JenB said:
And they have symptoms strongly suggestive of specific neurological deficits
And they have an abnormal clinical neurology exam
And they have abnormal imaging
And they have measurements that change during traction
And they have an abnormal ICP bolt test

Family history, signs of connective tissue disorder, etc., etc. also important
Click to expand...

The trouble is that there is no publicly available documentation of any of this.
Nobody has been saying much about abnormal neurological examination. I would be interested to know exactly what signs there were.
The abnormality of the imaging is something that seems open to debate. I have not so far seen any significantly abnormal images.
The change of measurement during traction, as I explained in response to debored13 looks like a worsening rather than an improvement. I might be wrong about that but nobody has so far suggested why aI should be and it looks fairly simple.

We need publicly available evidence before we go on the internet giving people the impression that there is medical evidence available to justify the surgery. You yourself have said there is zero evidence. So it is all a bit confusing.
 
JenB said:
Family history, signs of connective tissue disorder, etc., etc. also important
Click to expand...

But they aren't. Family history is used as a pointer towards requiring investigation. It is not evidence of pathology. I am a doctor, Jen. I spent forty years of my life using these tools. How do you come to be in a position to say something is important when you have never had any practical experience of the reality?
 
Moderator note

This thread was closed for moderation. It has now re-opened as a fully moderated thread. This means all posts will be checked by moderators before appearing on the thread. The aim is to enable productive, respectful and well-focussed discussions.
See the explanation from the committee here.
 
Last edited:
I have concerns about one of the main surgeons involved in these surgeries (Dr Bolognese),

https://www.google.co.uk/amp/s/www....nese-milhorat-article-1.172605?outputType=amp

One New York surgeon called his multi-surgery approach "ridiculously aggressive. ... The problem with this guy is that everybody gets three operations, including a spine surgery for bogus tethered cord."

Another, Dr. Michael Scott, chief of pediatric neurosurgery at Children's Hospital Boston and professor at Harvard Medical School, was even more direct.

"I think what they are doing to patients is reprehensible," Scott said. "If you talk to 100 neurosurgeons, 99 will say this is a lot of malarkey."
Click to expand...

Also,

In interviews with The News, a number of prominent surgeons accused Milhorat and Bolognese of endangering patients with an experimental technique being sold as a sure fix.

Scott, of Boston's Children's Hospital, said he was alarmed some five years ago, when parents began showing up in his office with kids who'd undergone what he called "huge operations with negative [normal] MRI studies" at the Chiari Institute — with long incisions and giant medical bills.

Scott said he took his concerns to the American Association of Neurological Surgeons ethics committee. Nothing happened
Click to expand...

Katie is now being treated by an expert neurosurgeon in Seattle who told her Katie never had a tethered cord. Moreover, a genetics specialist, Dr. Judith Martin, wrote in a May 7, 2008 report after evaluating Katie: "I do not feel she had Ehlers Danlos syndrome," a connective tissue disorder Bolognese told the family she had and gave as further indication of the need for tethered cord surgery. It's unclear what the future holds for her long term health.

"She is the winner, the most improved of any kid we have operated on!" Bolognese told the Bryants, claiming that the 2 cm protrusion of Katie's cerebellum had retracted 3.5 mm, after he cut her "filum" or spinal tissue with a 4.5 inch incision on her tiny back.
....
When she looked at the April 21 post operative report, and compared it to the March 24 MRI taken before Katie went under Milhorat and Bolognese's knives, she knew all she needed to know.

The radiologist wrote: "Chiari Malformation with 2 cm tonsilar herniation. Unchanged from prior study."
Click to expand...
 
Hi @Trish,
The website is called nydailynews.com.
I also cannot access it by going on the website directly, I think due to EU data laws. However, I can access it through a Google search which is what I posted above. I'm not sure why its not working for you, sorry.

The title is called " In case of Katie Bryant, med pros shocked by action of L.I. neurosurgeons Bolognese, Milhorat"
It was written Heidi Evans on Aug 09, 2009, at 10:28 a.m.

It relates to a lawsuit for a four year old child, called Katie Bryant.
 
Worryingly, this is also in the first article:

"I have good news and I have good news," the blue-jean clad Bolognese gushed in his Long Island office, sharing Pringles with Katie and her twin brother Brodie.

Katie's operation, Bolognese reported, was a roaring success. The Bryants heaved another sigh of relief when he said Brodie's MRI had no sign of Chiari.


Then, Bolognese said something that chills them to this day.

"I think we should do the same [tethered cord] surgery on Brodie so he won't develop Chiari later on in life," Bolognese said.


"My husband and I looked at each other in shock, and thought 'Is he kidding?'" Bryant recalled. "I knew right then and there we had made a terrible mistake."

It turns out the Bryants' concerns had been privately shared for years by many of the nation's leading brain surgeons — several of whom told the Daily News there is no proven scientific foundation for the surgical theory that made Milhorat the highest earning surgeon in the area.
Click to expand...
 
A different case here (filed April 21, 2010):

https://www.courtlistener.com/docket/4320390/covert-v-milhorat-md/

Covert v. Milhorat, M.D. (2:10-cv-01769)
District Court, E.D. New York

Assigned To: Joseph Frank Bianco

Referred To: A. Kathleen Tomlinson

Date Filed: April 21, 2010

Date Terminated: March 26, 2015

Cause: 28:1332 Diversity-Medical Malpractice

Nature of Suit: 362 Personal Inj. Med. Malpractice

Jury Demand: Plaintiff

Jurisdiction Type: Diversity


PDF: https://www.courtlistener.com/recap/gov.uscourts.nyed.303656.1.0.pdf
 
Russell Fleming said:
This occurred in 2009 so you'd expect some sort of report on the legal result I'd imagine.
Click to expand...

According to Wikipedia (not the most reliable source, I agree, and not necessarily even up-to-date), none of the multiple lawsuits against Dr. Bolognese has been resolved. I don't know how common it is for surgeons in the US to face lawsuits, though – it might be anything on the scale from exceptional to routine.
 
You must log in or register to reply here.
Back
Top Bottom