This Is MS Multiple Sclerosis Community: Knowledge & Support

Detailed Description:
Chronic Cerebrospinal Venous Insufficiency (CCSVI) has been proposed as the cause of numerous neurodegenerative diseases of the brain. CCSVI is the result of poor drainage of blood (and cerebral spinal fluid to some degree) from weakened or stenosed veins usually located in the cervical area (most notably the internal jugular veins). Although current focus and treatment of CCSVI is on multiple sclerosis, CCSVI has also been implicated as a potential cause of Alzheimer's disease and Parkinson's Disease. Additionally, patients with Ehlers-Danlos Syndrome (EDS) -- a disorder of connective tissue -- are more prone to developing multiple sclerosis than the general population. Many EDS patients are known to have weakened and abnormal blood vessels and 40 - 70% of EDS patients develop autonomic dysfunction in addition to numerous other symptoms found in patients with CCSVI. In the small subset of EDS and multiple sclerosis patients seen at Total Eye Care, the investigators have noticed a vascular irregularity (using the optomap® and examining the results under high magnification) which offers credence to the theory of CCSVI. Such objective data has been elusive, excepting for fMRI, ultrasound (to a limited degree) and venous angioplasty results. Current treatment of CCSVI involves the ballooning and sometimes stenting, of abnormally stenosed veins. The treatment of CCSVI offers hope to many patients suffering from multiple sclerosis. Although CCSVI research is in its infancy, many doctors believe that CCSVI is a significant portion of the solution to patients with neurodegenerative diseases of the brain. Because CCSVI is a vascular disorder, the investigators hypothesize that the investigators are able to screen candidates for CCSVI via the optomap®.

The investigators propose that evidence of chronic cerebrospinal venous insufficiency (CCSVI) may be evident in the vasculature of the fundus. The investigators will be examining fundi of multiple sclerosis patients and Ehlers-Danlos patients to see if evidence of CCSVI can be found in these patients having high risk for CCSVI. The investigators will read the fundus photos, compared to age-matched normals in a "blind" fashion.

The fundus of the eye is the interior surface of the eye, opposite the lens, and includes the retina, optic disc, macula and fovea, and posterior pole.

Oh boy, it looks like I'll need to get on Dr. Sclafani's thread, which must be over 2,000 pages by now.

You should look for and join his doctor only topic. I am sure your input would be very welcome there as well.

Hi Dr. Diana!

Will the statisticians be looking for a Zamboni-like set of criteria by which CCSVI could be diagnosed/screened for?

This was true for me too. I have ON as well. The colors are still bright three months later. It's a little jarring at times. Mostly in a good way but I also get sad for what I missed out on all these years.

There's a doctors only topic?! How did I miss that? Can I assume most of you have your honorable doctorates by now and are sneaking on, right?


I'll see if I can find it without getting lost (no sense of direction due to EDS)...

The colors! (love your description). I hear that all of the time from patients post-angioplasty. I have a theory about that and will present it to everyone for feedback soon. Dr. Dake asked me a similar question, and the only problem I'm running into is how to prove my theory right or wrong WITHOUT using tissue post-mortem. Ewww, and Yikes.

What? No volunteers?