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

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.

 

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.

 

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.

 

Sounds like you made the right choice for your care!

 

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.

 

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?

 

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

Also,

 

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.

 

(@Trish, the link in the post is to the New York Daily News from 2009. It's not possible to see the content in Europe.)

 

There is also a Google cache page available for the August 2009 article in @Elestar 's link:

https://webcache.googleusercontent....osurgeons-bolognese-milhorat-article-1.172605

 

Hi @Trish,
Yes, that also relate to Katie Bryant but it's a slightly different article, written in May 2009.
Did you try opening in Google.com?

 

Worryingly, this is also in the first article:

 

Are you able to locate anything that says what the outcome of the legal dispute(s) was? This occurred in 2009 so you'd expect some sort of report on the legal result I'd imagine.

 

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

 

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.