NEW: Clinical Trial in Texas w/Dr. Diana

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

NEW: Clinical Trial in Texas w/Dr. Diana

Postby cheerleader » Tue May 24, 2011 1:50 pm

Dr. Diana's clinical trial is announced---

For those with MS and Ehler Danlos, neuro-opthamologists are looking for the connection between CCSVI and the vascular abnormalities they are finding in the fundus of the eye. (note: my interest in this came from my husband's drusen and bilateral visual field loss as a child, and his diagnosis with bilateral jugular occlusions as an adult)

The trial is recruiting now in Colleyville, TX:
http://clinicaltrials.gov/ct2/show/NCT01356134

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®.


thanks, Dr. Diana! Hope you get some ThisIsMSers signing up, and hope you get more answers,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Johnnymac » Thu May 26, 2011 9:30 am

If anyone is interested in this but may need help getting around in Dallas just send me a PM, I'm more than happy to help. I live about 30 minutes drive to where this study is being held, its about 5 miles from the DFW airport as well.
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Postby DrDiana » Thu May 26, 2011 1:04 pm

Wow! Thank you, Cheerleader and Johnnymac!

Johnnymac, you are right -- our office is 7 miles, door step to door step from the airport. Most of you could probably rollerblade there from the terminal. :wink:

How you guys find these things is beyond me -- I hadn't even "announced" it, with all of the fanfare, partying, etc. My website is almost up (yes, I've said that for a while now -- I'm very picky about my fonts, apparently), but here is a YouTube announcement:

http://www.youtube.com/watch?v=cTj9VcTgAxk

I have a couple of other studies coming up right behind this one -- I can't wait to share them with you!

And for those of you who did not respond to angioplasty? I will have something for you, too! (We don't want to leave anyone out).

Gentle hugs to you all,

Dr. Diana
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Thu May 26, 2011 4:48 pm

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.

Very interesting indeed!! Wishing you all the best with this. We can definitely use more support in the research for CCSVI!

definition of fundus:
wikipedia wrote: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.
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Postby DrDiana » Thu May 26, 2011 5:19 pm

Thanks, Cece,

You are right, and I refuse to have this condition without doing everything possible to figure it out!

I think it does help to be both doc and patient. And staying in touch with smarties like all of you here is as good as seeing thousands of patients and comparing notes on them all. INVALUABLE.

:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Thu May 26, 2011 5:24 pm

We call it a forum but really it's a thinktank. :)
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ccsvi

Postby blossom » Thu May 26, 2011 8:08 pm

hi dr. diana, it is so good to see you here again. i had been checking for your site to start up.

we sure are finding that one shoe does not fit all and no stone should be left unturned. your one on one experience with your symptoms and your medical knowledge added to the search for answers and treatment is very exciting.
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Postby DrDiana » Thu May 26, 2011 8:47 pm

Cece -- you are right! It IS a "thinkthank" -- a very well organized one, too. And it is a family, too, don't you think? A caring group of folks, some a bit quirky, that you can talk to, lean on, learn from, YELL AT IN ALL CAPITALS and come right back home to.

I'm such a sap.

Blossom -- thank you for your sweet comment. Fanfare on the site to come soon!

Is anyone going to the meeting in NY with Dr. Sclafani? It looks like I may get to speak (pinch me), and I was getting on to learn more about it...
Oh boy, it looks like I'll need to get on Dr. Sclafani's thread, which must be over 2,000 pages by now.

:)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby codefellow » Thu May 26, 2011 9:21 pm

DrDiana wrote: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.
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Postby HappyPoet » Fri May 27, 2011 4:23 pm

Hi Dr. Diana!

Congratulations on the announcement of your trial! I hope circumstances will work out favorably so you can speak at Dr. Sclafani's NYC CCSVI symposium.

Your primary outcome measure of abnormal vessel appearance in the fundus is fascinating: venous engorgement and beading, abnormal A/V ratio, blurred disc margins, papilledema, dot hemorrhages, or exudates. With this number of variables, will the statisticians be looking for a Zamboni-like set of criteria by which CCSVI could be diagnosed/screened for?

Also, immediately after my IJV venoplasty, for the first time in my memory, I saw vivid, shockingly BRIGHT colors (I have ON); others here at TIMS have also reported seeing BRIGHT colors immediately after IJV venoplasty (I don't know if they have ON). Do you have any idea what (variable(s)) might be the cause for this particular sudden change in vision?

Thank you!

Edit: I realized I couldn't see the color "cyan" when my eyes became tired, so I swithed the color "cyan" to the color "blue" in the word BRIGHT.
Last edited by HappyPoet on Fri May 27, 2011 7:28 pm, edited 1 time in total.
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Postby Cece » Fri May 27, 2011 4:37 pm

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.
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Postby DrDiana » Sat May 28, 2011 6:40 pm

codefellow wrote:
DrDiana wrote: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.


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)...
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sat May 28, 2011 6:52 pm

HappyPoet wrote:Hi Dr. Diana!

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


Great question, HappyPoet! At this point, with only 30 MS patients and 30 normals, it's almost more of a pilot study to see if it warrants a bigger study. The statistician (uh, that would be me) will be looking at the fundus photos "blindly" and trying to divide them into "normal" and "not normal". Any of the criteria may be enough to put someone in the "not normal" category. Then we'll analyze them from there as to what indicators were most prominent, etc.

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? :lol:
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby DrDiana » Sat May 28, 2011 7:01 pm

Cece wrote: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.


I am so happy that is holding for you, Cece. Eye docs hear that a lot from cataract patients, post surgery. It's a great feeling for the patient AND the doctor.

I can see a study soon about the number of ON episodes pre-angioplasty, the success (or not) of improvement with angioplasty, and if the patient has any more occurrences of ON post-angioplasty... I think we'll need a few more patients under our proverbial belt and more time post-angioplasty before we'll be able to run that test, though.

Ooooh - that might be a great question to have for the folks who record their results of angioplasty over time on this site... I wonder if it's too late to add that? "Perceived change in colors?" "Number of ON recurrences".

Great idea, Cece!
:wink:
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Sat May 28, 2011 7:38 pm

DrDiana wrote: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)...

It was something of an experiment back in January, it hasn't been kept up:
www.thisisms.com/ftopic-15223-days0-orderasc-0.html
DrDiana wrote: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? :lol:

Maybe, if post-mortem tissue is what it takes, then post-mortem tissue is what it'll have to be....we support you fully in this. We are right behind you, several steps back, because of the eww and all.

Looking forward to hearing your theory on the colors. Mine is that colors are diminished due to hypoxia, as occurs in climbers at high altitudes.

www.thisisms.com/ftopic-15653-0-days0-orderasc-.html
(previous discussion on what could cause the colors)
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