Wanted to check in and share some ongoing research.
The Beijing Institute for Brain Disorders has been using stents to repair slowed jugular venous flow, reduce collateral veins, improve intracranial hypertension and cerebral perfusion in a variety of patients.
The Beijing Institute for Brain Disorders was founded in 2012, in the hopes of using new technologies to prevent and repair neurological disorders. The group of neurosurgeons have published that jugular venous stenting is a safe and effective procedure, which is helping a variety of patients with neurological disorders. They are working with the neurological department at Wayne State (Dr. Haacke's university), and presented at ISNVD last year.
They are looking at jugular venous outflow disturbances
Intracranial hypertension, headache, visual disturbances, and tinnitus improved in 15 patients who had stents implanted in their jugular veins.
Now they are looking at patients who come in with other symptoms such as headache and dizziness---and are comparing MRIs, SPECT and venographies and finding some important things. Notice there is no mention of MS, or CCSVI. They're just neurologists looking at reported symptoms, jugular stenosis, cerebral hypoperfusion, demyelination, and questioning how these might be related.
Recently, internal jugular vein stenosis (IJVS) is gaining increasing attention from clinical researchers due to a series of confounding symptoms that impair the quality of life in affected individuals but cannot be explained by other well-established causes. In this study, we aimed to elucidate the clinical features, neuroimaging characteristics and pathogenesis of IJVS, and explore their possible correlations, in attempt to provide useful clues for clinical diagnosis and treatment. Forty-three eligible patients with unilateral or bilateral IJVS confirmed by contrast-enhanced magnetic resonance venography of the brain and neck were enrolled in this study. Magnetic resonance imaging along with magnetic resonance angiography or computed tomography angiography was applied to identify the radiological pattern of parenchymal or arterial lesions. Cerebral perfusion and metabolism were evaluated by single-photon emission computed tomography (SPECT). Of the 43 patients (46.0 ± 16.0 years old; 30 female), 14 (32.6%) had bilateral and 29 had unilateral IJVS. The common clinical symptoms at admission were tinnitus (60.5%), tinnitus cerebri (67.6%), headache (48.8%), dizziness (32.6%), visual disorders (39.5%), hearing impairment (39.5%), neck discomfort (39.5%), sleep disturbance (60.5%), anxiety or depression (37.5%) and subjective memory decline (30.2%). The presence of bilateral demyelination changes with cloudy-like appearance in the periventricular area and/or centrum semiovale was found in 95.3% (41/43) patients. SPECT findings showed that 92.3% (24/26) patients displayed cerebral perfusion and metabolism mismatch, depicted by bilaterally and symmetrically reduced cerebral perfusion and increased cerebral glucose consumption. IJVS may contribute to alterations in cerebral blood flow and metabolism, as well as white matter lesion formation, all of which may account for its clinical manifestations.
https://www.thieme-connect.com/products ... 2Lddc8byTk
It's now almost 10 years since Jeff had his stenotic jugular veins repaired. He's still doing really well--thankfully still quite mobile, working, healthy. His cardiovascularly healthy lifestyle has maintained stent patency. I often wonder what might have happened if he'd just been treated and I didn't blab about it online. But I'm happy to see the science will continue on--perhaps removing this condition from MS and CCSVI will allow more people to be treated. I know of a few neurosurgeons in the US doing just that, but I won't be sharing any more online. Look for continuing publications on endovascular treatment to relieve IIH and stenotic jugular veins to learn more.
dx dual jugular vein stenosis (CCSVI) 4/09
Thanks so much for posting this. I think everything you have done so far to contribute to the sharing of information about CCSVI has been extremely helpful. Its not your fault that the western world of medical research has the limitations it does.
That's incredibly good news that China is making progress on this. The symptoms described in the study you quoted above sure sound a lot like MS!!!
It will be ironic if China is able to make this treatment mainstream there, and then it becomes accepted over here. We can always hope!The presence of bilateral demyelination changes with cloudy-like appearance in the periventricular area and/or centrum semiovale was found in 95.3% (41/43) patients.
Thanks for all the great work you do, and I'm so happy for you that Jeff continues to do well.
cheerleader wrote:Clinical Characteristics and Neuroimaging Findings in Internal Jugular Venous Outflow Disturbance
Eur J Neurol. 2018 Feb;25(2):365-e13.
The article's supplemental materials are freely available and include an interesting table of pre vs post treatment symptomology. Many of the symptoms they checked we've already discussed as related to CCSVI, e.g., headache, tinnitus, visual disturbance, mean intracranial pressure gradient and pressure gradients across the stenosis. Most of these symptoms were found to be significantly reduced post treatment.
https://www.thieme-connect.de/media/10. ... 180624.pdf
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