JUGULAR VENOUS OUTFLOW DISTURBANCE

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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vesta
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JUGULAR VENOUS OUTFLOW DISTURBANCE

Post by vesta »

JUGULAR VENOUS OUTFLOW DISTURBANCE (CEREBRAL VENOUS CONGESTION)

Sound familiar ?
As of 2018 we have a new « condition » which apparently is at the origin of multiple health problems , « such as headaches, dizziness, pulsatile tinnitus, visual impairment, sleep disturbance, and neck discomfort or pain. »
See below quote
Understanding jugular venous outflow disturbance
https://pubmed.ncbi.nlm.nih.gov/29687619
Abstract
Extracranial venous abnormalities, especially jugular venous outflow disturbance, were originally viewed as nonpathological phenomena due to a lack of realization and exploration of their feature and clinical significance. The etiology and pathogenesis are still unclear, whereas a couple of causal factors have been conjectured. The clinical presentation of this condition is highly variable, ranging from insidious to symptomatic, such as headaches, dizziness, pulsatile tinnitus, visual impairment, sleep disturbance, and neck discomfort or pain. Standard diagnostic criteria are not available, and current diagnosis largely depends on a combinatory use of imaging modalities. Although few researches have been conducted to gain evidence-based therapeutic approach, several recent advances indicate that intravenous angioplasty in combination with stenting implantation may be a safe and efficient way to restore normal blood circulation, alleviate the discomfort symptoms, and enhance patients' quality of life. In addition, surgical removal of structures that constrain the internal jugular vein may serve as an alternative or adjunctive management when endovascular intervention is not feasible. Notably, discussion on every aspect of this newly recognized disease entity is in the infant stage and efforts with more rigorous designed, randomized controlled studies in attempt to identify the pathophysiology, diagnostic criteria, and effective approaches to its treatment will provide a profound insight into this issue. »
This sounds alot like CCSVI MS to me.
See below Wikipedia quote on CCSVI.
WIKIPEDIA
« Chronic cerebrospinal venous insufficiency (CCSVI or CCVI) is a term invented by Italian researcher Paolo Zamboni in 2008 to describe compromised flow of blood in the veins draining the central nervous system.[1][2] Zamboni hypothesized that it might play a role in the cause or development of multiple sclerosis (MS).[3][4] Zamboni also devised a surgical procedure which the media nicknamed a liberation procedure or liberation therapy, involving venoplasty or stenting of certain veins.[5] Zamboni's ideas about CCSVI are very controversial, with significantly more detractors than supporters, and any treatments based on his ideas are considered experimental
There is no scientific evidence that CCSVI is related to MS, and there is no good evidence that the surgery helps MS patients. Zamboni's first published research was neither blinded nor did it have a comparison group.[5] Zamboni also did not disclose his financial ties to Esaote, the manufacturer of the ultrasound specifically used in CCSVI diagnosis.[8] The "liberation procedure" has been criticized for possibly resulting in serious complications and deaths, while its purported benefits have not been proven.[5][7] In 2012, the United States Food and Drug Administration states that it is not clear if CCSVI exists as a clinical entity and that these treatments may cause more harm.[9] In 2017 they emphasized that this use of balloon angioplasty is not an approved use.[10] In a 2017 study Zamboni et al. stated "Venous PTA cannot be recommended for patients with relapsing-remitting multiple sclerosis."[11] In 2018 a study in Neurology concluded "Our data do not support the continued use of venoplasty of extracranial jugular and/or azygous venous narrowing to improve patient-reported outcomes, chronic MS symptoms, or the disease course of MS."[12]
Research on CCSVI was fast-tracked, but researchers have been unable to find a connection between CCSVI and MS.[13] This has raised serious objections to the hypothesis of CCSVI originating multiple sclerosis.[14] Additional research investigating the CCSVI hypothesis is underway.[15] A 2013 study found that CCSVI is equally rare in people with and without MS, while narrowing of the cervical veins is equally common. »

So let’s be honest. I believe the MS Drug Cartel conspired to discredit the disturbed blood circulation factor in MS defined by Dr Zamboni as CCSVI. They ran the treating Doctors (mostly Interventional Radiologists) out of town, even country. It’s mostly the Chinese who continued research as we can see in the above 2018 research article which coincides with the following 2018 Neurology conclusion "Our data do not support the continued use of venoplasty of extracranial jugular and/or azygous venous narrowing to improve patient-reported outcomes, chronic MS symptoms, or the disease
So, MSers, don’t despair. Find practitioners treating this « new » condition. NEVER MENTION MS. Once treated, the MS symptons may subside. No harm done, it’s worth a try. And maybe get off the drugs which according to Dr George Ebert don’t prevent descent into handicap. (See posted on You Tube November 4, 2013 by the European Medicines Agency. www.youtube.com/watch?v=OqY-_K1fYJY) Maybe enhancing ones health through diet, supplements my SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH - M.S. Cure Enigmas https://www.mscureenigmas.net would be a better approach. Or Matt Embry’s MS Hope http://www.mshope.com
Some questions to ask the Doctors treating Jugular Venous Outflow Disorders.
Is venoplasty used to open venous flow through the jugulars?
Are stents used to keep the channel open?
Since venous blood descends towards the heart, in 2009 a dislodged stent caused a heart attack in a MS venoplasty patient at Stanford, putting an end to stent use. Has this problem been overcome, and how?
I hesitate to try venoplasty for fear of damage to the blood vessel, leading to a blood clot and permanent obstruction. How is this danger being avoided?

A new Facebook Group Jugular Venous Outflow Disorders (Cerebral ... - Facebook
ymhttps://www.facebook.com/groups/3737591956275670

A member posted the following list of practitioners :

Doctors and medical teams with expertise in diagnosing and treating jugular outflow issues**

EUROPE

Cambridge, UK
Dr. Patrick Axon (Otolaryngology)
Dr. Nicholas Higgins (Neurointerventional radiology [NIR])

Italy
Diagnostics and jugular balloon angioplasty:
Dr. Tommasso Luppatelli
Dr. Attilio Guazzoni
Dr. Aldo Bruno
———————————

USA

Baltimore, Maryland
Dr. Ferdinand Hui (NIR)

Sacramento, California
Dr. Ji (NIR)
Dr. Jian (Neurosurgery)

San Francisco, California
Dr. Matthew Amans (NIR)

Phoenix, Arizona
Dr. Peter Nakaji (Neurosurgery)

Remote Second Opinions
Dr. Kenneth Liu (NIR)
Contact: Kenneth.c.liu.md@gmail.com

Manhasset, New York
Dr. Athos Patsalides (NIR)
Dr. Amir Dehdashti (Neurosurgery)

Denver, Colorado
Dr. Edward Hepworth (Otolarynology)
Dr. Stephen Annest (NIR)

Salem, North Carolina
Dr. Kyle Fargen (Neurosurgery, cerebrovascular)

Rochester, Minnesota
Dr. Waleed Brinjikji (NIR)
Dr. Giuseppe Lanzino (Neurosurgery)
Dr. Daniel Price (Otolaryngology)

Previously published on my site MSCureenigmas.net https://www.mscureenigmas.net

Best regards, Vesta
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