This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:

CD wrote:I went permanently blind in my right eye within hours on October 29, 2011, with no explainable reason from over 6 drs. I am devastated and still in shock over this.

It is devastating. And no explanation.
I wish you continued healing, emotionally and physically, despite this loss.

Thank you Cece.

Have you read "Rise and Shine"? The guy had a bad bad car accident, and one of the symptoms he went after tenaciously until it resolved was one he called "Dracula Eye". His eyes would not have any more white but would be always red instead. One of the latter surgeries he had was removal of a rib on each side for what a doctor called "bilateral thoracic outlet syndrome". His TED talk is here.

Anyway I will give you my eye problems: I have had double vision that seems to really be one eye being slow to catch up with the other. It happens when I shift what I look at, in the periphery. I have to patiently wait for the doubling to resolve, I can't seem to make one of my eyes track. It is more when I look right but I can''t tell you which is the problem eye.

This used to remit but doesn't anymore. It is just sometimes a lot worse (mostly when I am exhausted).

My vision is mostly OK for my age but this past fall I had a bout of dry-eye and couldn't even read or watch TV. Yuk.

Lost most of my lashes to mitoxantrone. The optometrist says my vision can't be improved with a better prescription: it must be age. I don't have any spots or flashes. Haven't had any blindness yet (heavy knock on head).

CD wrote:Hi Dr. Diana,
I would like to send a PM or email to you with my whole story. Feel free to use my story as you wish. I do have many eye issues to ask you about, all new.

I went permanently blind in my right eye within hours on October 29, 2011, with no explainable reason from over 6 drs. I am devastated and still in shock over this.
You can PM me if you would like me to email or PM you my story.
Thank you,
CD

I'm so sorry to hear that... I'm pretty open with my contact info -- you'll find it on my website at Prettyill.com .
I'm trying to figure out how to juggle everything, so bear with me! But if there is any insight I can provide for you, I'd like to do that.
Big hug,
Diana

1eye wrote: Anyway I will give you my eye problems: I have had double vision that seems to really be one eye being slow to catch up with the other. It happens when I shift what I look at, in the periphery. I have to patiently wait for the doubling to resolve, I can't seem to make one of my eyes track. It is more when I look right but I can''t tell you which is the problem eye.

This used to remit but doesn't anymore. It is just sometimes a lot worse (mostly when I am exhausted).

1eye, have you had angioplasty, or do you know if you have CCSVI worse on 1 side than the other?
Thanks!!!
Diana

CureOrBust wrote: Over a year ago, there was some research performed which found that a simple OCT scan was a good indicator as compared to an MRI regarding disease progression.

Did you see Dr. Simka's abstract about the OCT study his group did? His was the largest, but there have been a couple of others, too. There are some problems with knowing what the results mean with the OCT (we can see a thinner nerve cell layer, but don't know if it is from glaucoma or MS, for example.)
One thing his group found that I also found in my fundus study (looking at the back of the eye), was that the problems showed up mainly when the CCSVI was much worse on one side than the other. Interesting...

Thanks so much!

Hello, my friends,
If you haven't gotten a reply, it's not because I'm ignoring you! With some of you, some more history will be sooo helpful. Others, I have answers for you, and will share all I know, OK?

If anyone else has any questions, don't hesitate, OK?

Diana

Cece wrote:Why are my eyes so much better now (since CCSVI treatment), and will it last?

Cece, did you see my talk in New York or Sidney? Dr. Sclafani was kind enough to post it to his website. If you take a look at the fundus pictures, I talk about how we develop lack of perfusion in the retina, too (visible by looking at the vessels of the fundus of the eye, which are WAY TOO SMALL and non-existant (or empty ghost vessels) in many parts of the fundus). I do think angioplasty allows the circulation to return there... The pics tell the story.

Cece wrote:Colors are brighter - is that improvement from the eye or the brain?

Ooh, Ooh, I LOVE this question. This is the great thing about being an eye doctor. The retina and optic nerve are EXTENSIONS OF THE BRAIN (unlike any of the other cranial nerves). How cool is THAT? I think the answer is the same as the first question...

Cece wrote:My pars planitis has never been this quiet. Is that due to improved venous drainage of the eye? Will it last?

Cece, this is a big part of my talk for ISNVD!!! You'll enjoy this part, so unfortunately, I need to keep you hanging right now.

Cece wrote:My prescription improved. Exactly how did that happen? Pressure changes of the shape of the eye after CCSVI treatment reduced congestion?

Cece, can you dig up your old and new Rx? This will give me some clues..

Cece wrote:I used to have an eye go blurrry, for a very short time, less than a minute, and then come back clear. It was not really a problem except when driving, and it was never both eyes. That's not happening any more. I do not want it to start again. Will it last?

You have a crystal ball, right?

Why yes, yes I do. But you think an fMRI machine is expensive?? HA!!!

Thanks, Cece
Big hug,
Diana

Hi Dr Diana. I have high ocular pressure. It is always just above the upper limit or at it My retina is always fine. No problems. I have CCSVI. All 3 veins are now 100% occluded with scarring after having tried angioplasty. Could this explain the high ocular pressure? My face, lips, inner mouth, nasal passages are always swollen.

DrDiana wrote:

CureOrBust wrote: Over a year ago, there was some research performed which found that a simple OCT scan was a good indicator as compared to an MRI regarding disease progression.

Did you see Dr. Simka's abstract about the OCT study his group did? His was the largest, but there have been a couple of others, too. There are some problems with knowing what the results mean with the OCT (we can see a thinner nerve cell layer, but don't know if it is from glaucoma or MS, for example.)
One thing his group found that I also found in my fundus study (looking at the back of the eye), was that the problems showed up mainly when the CCSVI was much worse on one side than the other. Interesting...

Thanks so much!

Simka's abstract:
http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf



There was the effect of asymetric CCSVI, with more retinal neurodegeneration on the eye on the same as the most occluded jugular. But he also found that ocular pathology was even worse in MS patients without CCSVI, and I cannot think of the explanation for that. (And, as always, I wonder if there are truly MS patients without CCSVI, or if CCSVI is near-universal, as Dr. Zamboni originally found?)

Very very interesting that you have results from your fundus study already! And yes I have watched your presentation online! It may take watching more than once, though. Too small/nonexistent/ghost vessels in the fundus of our eyes...have you had the chance to observe anyone before and after the procedure, to document a return of circulation?

Hi Dr. Diana,
Is it possible for these small vessels/ghost vessels, in the fundus, that help drain the eye are really collaterals? And if so, can they rupture and cause blood inside the eye from lack of drainage outflow? Perhaps because of Optic Neuritis and/or MS relapse?
Thank you,
CD

Hi Doc,

have you seen this study?
http://www.hindawi.com/journals/msi/2011/289785/

Exploring the Association between Retinal Nerve Fiber Layer Thickness and Initial Magnetic Resonance Imaging Findings in Patients with Acute Optic Neuritis

1eye, have you had angioplasty, or do you know if you have CCSVI worse on 1 side than the other?

Yes. I think it was treated mostly on the left, which is my disability side, but it's restenosed or clotted or something now on the right.