Page 2 of 5
Re: VALVES KEY in CCSVI Syndrome - P Zamboni and R Galeotti
Posted: Tue Sep 20, 2011 11:53 am
by MarkW
Re-read this paper while preparing my NICE submission. Gives the originators' view on valves.
MarkW
Re: VALVES KEY in CCSVI Syndrome - P Zamboni and R Galeotti
Posted: Thu Sep 22, 2011 8:17 pm
by Cece
http://en.wikipedia.org/wiki/Syndrome
Syndromes and associated conditions
The description of a syndrome usually includes a number of essential characteristics, which when concurrent lead to the diagnosis of the condition. Frequently these are classified as a combination of typical major symptoms and signs—essential to the diagnosis—together with minor findings, some or all of which may be absent. A formal description may specify the minimum number of major and minor findings respectively, that are required for the diagnosis.
In contrast to the major and minor findings typical of the syndrome, there may be an association with other conditions, meaning that in persons with the specified syndrome these associated conditions occur more frequently than would be expected by chance. While the syndrome and the associated conditions may be statistically related, they do not have a clear cause and effect relationship, i.e., there is likely to be a separate underlying problem or risk factor that explains the association. An example would be Down syndrome, which has the associated condition of diabetes mellitus. A knowledge of associated conditions would dictate that they are specifically looked for in the management of the syndrome.
So the syndrome CCSVI has the associated condition of multiple sclerosis. Seems simple.
Re: KEY INFO: CCSVI Syndrome - P Zamboni and R Galeotti
Posted: Fri Sep 23, 2011 2:46 am
by frodo
Mark, the paper says "is a syndrome characterized by stenosies". It says nothing about valves. Don't you think you should change the title of the thread? ("Valves key in CCSVI syndrome"). It is the most inaccurate thing I have seen ever.
MALFORMED VALVE = KEY in CCSVI Syndrome
Posted: Sat Sep 24, 2011 3:19 pm
by MarkW
"As far as the origin of venous narrowing is concerned, phlebographic studies of the IJVs and AZ systems demonstrated that venous stenoses were likely to be truncular venous malformations; mostly, they are intraluminal defects such as malformed
valve, septa webs."
Extracting the basic message: .....venous stenoses...mostly.....are......malformed valves.
Paper should be studied fully, with a medical dictionary. It is hard work Frodo.
Cece, it is better to say MS has an associated syndrome called CCSVI syndrome in many cases. The key point is that the symptoms of CCSVI may be treated without an explanation of the links between MS and CCSVI.
MarkW
MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Tue Sep 27, 2011 2:02 am
by MarkW
I changed the title so Newbies would not miss it. If you are a CCSVI patient or advocate it is a 'must read and learn'.
MarkW
CCSVI is a Syndrome by P Zamboni and R Galeotti
Posted: Fri Sep 30, 2011 1:01 pm
by MarkW
Hello Frodo, CCSVI is a Syndrome, not a condition ...................MarkW
Re: MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Fri Sep 30, 2011 2:25 pm
by Cece
http://en.wikipedia.org/wiki/Disease#Medical_condition
A medical condition is a broad term that includes all diseases and disorders. While the term medical condition generally includes mental illnesses, in some contexts the term is used specifically to denote any illness, injury, or disease except for mental illnesses. The Diagnostic and Statistical Manual of Mental Disorders (DSM), the widely used psychiatric manual that defines all mental disorders, uses the term general medical condition to refer to all diseases, illnesses, and injuries except for mental disorders.[9] This usage is also commonly seen in the psychiatric literature. Some health insurance policies also define a medical condition as any illness, injury, or disease except for psychiatric illnesses.[10]
I am not sure how a word that is so broad that it includes 'any illness, injury, or disease except for mental illnesses' would not also include CCSVI....
I must be very precise, I must be very precise, I must be ve
Posted: Mon Oct 03, 2011 9:11 am
by MarkW
Hello Frodo and Cece,
You are right, I was wrong. I try to avoid being imprecise but failed this time.
I should have written "CCSVI is not just a condition, as it is a syndrome"
In UK medics use the term 'condition' for anything they cannot describe more accurately. If Latin terms are used for the condition it is really very general condition.
I am trying to make the point that CCSVI syndrome is a syndrome, which has definite diagnosible symptoms if a catheter venogram and intravascular ultrasound are used. Neuros are still trying to say that CCSVI does not exist, which is why I am encouraging people to call CCSVI syndrome by the name Prof Zamboni gave it.
Thanks for the challenge.........I must be very precise.
MarkW
Re: MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Mon Oct 03, 2011 10:57 am
by Cece
You are already quite precise, and you would have us be more precise.
I am not worried about what the neurologists think. They have been side-lined, as far as I can tell. What matters is what the IRs and vascular specialists think. The research being done can only be done by researchers with catheter skills.
We get further if there is collaboration between the vascular guys and the neurologists, but we can get pretty far without the neuros.
Neuros are gatekeepers, gate is nearly shut in UK
Posted: Tue Oct 04, 2011 1:30 am
by MarkW
Hello Cece,
I wish it did not matter what neuros do or think. In the UK (and other national health systems) the neuro controls the treatment for pwMS, so what they think and do is important.
A personal example: in late 2009 I convinced a consultant IR to do a doppler scan on me, in Oxford as a private patient. The neuro dept stepped in and the scan was stopped. I could afford the luxury of making my own decisions, so went to Athens (Jun 2010) and Brooklyn (June 2011). Most pwMS in UK cannot afford to do this.
In the UK neuros are gatekeepers to treatment for most pwMS and they have a lot of influence on their colleagues. There is only one clinic (EHC) offering diagnosis and treatment for CCSVI syndrome in Scotland (UK). Some IRs started but neuros blocked them.
You are more fortunate in the USA with some insurers paying in some cases.
Kind regards,
MarkW
Re: MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Tue Oct 04, 2011 7:45 am
by Cece
I feel very fortunate for the circumstances that allowed me to have the procedure done twice here in the US, by a top doctor proficient in CCSVI, covered by insurance. While I am concerned that I could restenose over the next many months or year and that by then insurance will stop paying, that is nothing compared to friends who know they have restenosed and have never had coverage for CCSVI.
It is illogical for neurologists to have control over a disorder (CCSVI syndrome) that cannot be treated by them. I would hope that the power will continue shifting from the neurologists to the IRs when it comes to our vascular care.
My own personal experience has been that my neurologist practically steams during a conversation about CCSVI, and has nothing but negatives to say about it, but that his opinion had no impact on my ability to get the procedure done.
I do concede that Dr. Dake's research has been held up by the Stanford neurology department, which is being unduly slow at agreeing on what endpoints he should use, if I understand the situation at all.
Re: MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Thu Oct 13, 2011 4:43 pm
by Cece
http://www.ncbi.nlm.nih.gov/pubmed/21975259
In Dr. Siskin's recent paper, CCSVI was described as a condition. I was reminded of this conversation! Would it have been more accurate for him to use the word 'syndrome'? Does he see a difference between the two? He has posted here sometimes, although I doubt he'll happen onto this thread.
Re: MUST READ - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Tue Nov 01, 2011 7:40 am
by MarkW
Syndromes are treated because they exist and can be treated safely. This is the reason for calling it a syndrome, makes it illogical for neuros to deny treatment of CCSVI syndrome in pwMS.
MarkW
READ IT ??? - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Sat Nov 12, 2011 3:24 am
by MarkW
There are not a lot of questions on this thread. What does this mean ?? Are pwMS reading the paper and just accepting it as gospel ??
MarkW
Re: FIRST STOP - CCSVI Syndrome by P Zamboni and R Galeotti
Posted: Fri Nov 18, 2011 10:45 am
by MarkW
Have you studied this paper yet ?