Can I answer your eye questions at ISNVD?

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

Can I answer your eye questions at ISNVD?

Postby DrDiana » Fri Dec 30, 2011 5:46 pm

Hi Everyone,

I have been blessed with time to speak at ISNVD (ISNVD.org), and my topic is "CCSVI -- the EYES have it". Yea, I thought it was incredibly clever, too. ha.

I want to address as many "eye and vision concerns" as possible, so I reach out to you.
No matter how crazy they may seem, trust me, you're not the only one. Do you have any unexplained (or explained!) eye conditions or visual symptoms that you'd like discussed? Speak now! 8O

I'll also be presenting THREE scientific abstracts! Holy cow. I'm pretty excited, but as a spoonie, too, I'd be so grateful for your thoughts of great strength! This is a long and grueling conference (for a spoonie!).

Thanks so much, everyone! And Happy New Year! This is going to be OUR YEAR, my friends! :wink:

:) Diana
Last edited by DrDiana on Sat Dec 31, 2011 12:10 pm, edited 1 time in total.
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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Re: Can I answer your eye questions at ISNVD?

Postby cheerleader » Fri Dec 30, 2011 8:01 pm

Great news, Dr. Diana!
I hope to finally meet you in Orlando--still working on travel plans. I'm so glad you're making a presentation on the eyes. There's so much the doctors can learn from your expertise.

My question relates to my husband Jeff's loss of vision. As a child, he was diagnosed with "bilateral optic nerve head drusen" and vision loss. He cannot remember ever having peripheral vision, and he has none now. He has tunnel vision and terrible night time vision. Dr. Dake recommended an OCT test last year, and Jeff's retina looks great, no thinning...but those drusen are still there.

Jeff had very high stenosis (into the left dural sinus) and both jugulars were seriously compressed. He had venoplasty and stenting almost three years ago, and is doing quite well. His vision loss had previously stabilized as a young adult, but he was diagnosed with MS at age 44, 4 1/2 years ago. He had over 20 cerebral lesions. He has had no MS progression, no new lesions since venoplasty, and had a reversal of gray matter atrophy.

Do you think intracranial hypertenision due to his jugular malformations might have contributed to his vision loss (like in pseudotumor cerebri?) Could these drusen actually be more like papilledema? Have you heard about anyone else with MS presenting with this type of vision loss? We realize Jeff's peripheral vision will never return, since it's been gone for over 35 years. But we're hope the vision loss has stabilized, now that his jugulars are flowing.

thoughts?
thanks!
Joan/cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Can I answer your eye questions at ISNVD?

Postby blossom » Fri Dec 30, 2011 8:33 pm

dr. diana, first, to you and your loved ones, i send you wishes of great success in your research, your health, and all you thrive for in this coming new year.

i cannot add any input with the eyes. fortunatly after nearly 20 yrs. they remain good. this has never been an issue in any way. what i might add though is that your research and the other dr.'s involved may help any of us that have been branded with these symptoms someone decided to name ms and we all were thrown into a bushel basket-- that have been basically looked at the same "and i firmly believe we are not". there may be groups of us with the sameness and cause..but, the dr.'s quit looking at us as individuals and i feel that is wrong and treatments fail. all it did accomplish was to provide a large community of sick people that assured the drug companies a very big market to make cazillions of money and to sell us more drugs after the first drugs screwed people up.

but, "YOU" GO GIRL!!. lets hope it is a blending of knowledge that helps us all.




the best.
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Re: Can I answer your eye questions at ISNVD?

Postby CureOrBust » Fri Dec 30, 2011 9:00 pm

I personally have been very lucky in that I have never had a case of ON. :YMPARTY:

What I have had issues with is nystagmus when I try to look hard left or right using only my eye movement, and thereby focus. 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. I had a "baseline" performed back then based on this news, and found it considerably less of a hassle and would also be less expensive than an MRI to possibly track the results of CCSVI treatments? hopefully possibly creating an cheaper avenue to validate or disprove CCSVI interventions in MS; which I would hope they would all be interested in.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2863
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Re: Can I answer your eye questions at ISNVD?

Postby Rosegirl » Sat Dec 31, 2011 6:16 am

I assumed that losing the ability to read very small print was just a part of getting older. But when I had a CCSVI procedure this spring, the only benefit I got out of it was that I could immediately read the tiniest print on a pill bottle. More than 8 months later, that is still true.

My opthamologist wasn't the least impressed. He said that could easily happen because the change in pressure allowed the shape of the eyeball to change its focal point. I assumed the change was due to more oxygen, but he said that was not the case.

Does this corelate to another thread on this site that posits that the link between CCSVI and particular symptoms is actually where pressure affects parts of the brain, rather than a link between the location of lesions and symptoms? Given that doctors can map at least some relationship between specific parts of the brain and bodily functions, could this be another indication of the connection?

It would certainly explain why researchers doing autopsies could not find any consistent link lower down on the body. If this is true, would that make diagnosis and treatment any easier?
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Re: Can I answer your eye questions at ISNVD?

Postby Hooch » Sat Dec 31, 2011 8:05 am

Thanks Dr Diana for asking us this question. I am not getting any answers from eye doctors here in Canada to the following.
Short history - I am a female diagnosed with MS in 1997 at age 43, started with optic neuritis in left eye following cataract surgery in that eye 2 weeks before. I have always had glasses for myopia and astigmatism since age 6 years and had the right eye cataract surgery earlier the same year.

Diagnosed with high intraoccular pressure in right eye 4 years ago, left eye slightly raised. I have been on various drops since - now on Lumigan daily and Combigan twice daily. This appears to keep my pressures at around 22.

I had treatment for CCSVI in Sep 2010 and this appeared to help my vision - colours, 3 D type effect and night vision. These improvements have slipped but are still there however it hasn't helped the pressures. On my MRV taken back in March 2010 there is an area near the right eye in which it appears blood (or something) is pooling.

Here is the question. For about 6 or 7 years I have had clear fluid leaking out of my right eyebrow not neccessarily related to sweating but worse when I am hot. The whole of my eye socket appears swollen and often feels tense and sore. The vein near is also very noticable. I know you talked about having CSF coming out of various places yourself so I was wondering if this is even a possibility for me - it sounds very crazy and unlikely but I would be interested in your ideas.
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Re: Can I answer your eye questions at ISNVD?

Postby DrDiana » Sat Dec 31, 2011 12:14 pm

These are great -- please keep 'em coming! I will address all of them, eventually, I promise. It's a huge help to know what problems you are having. Most folks kind of get the optic neuritis thing, but we can have SOOOO many other ocular issues that at first blush may seem ridiculous. I don't think so, my friends! I truly believe that our ocular symptoms and signs will tell us much about our condition(s).

And Blossom, ABSOLUTELY! Many conditions, many effects, and yet one label. That will change, I have no doubt...

Thank you everyone,
:) 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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Re: Can I answer your eye questions at ISNVD?

Postby MrSuccess » Sat Dec 31, 2011 3:43 pm

I must be an idiot .... what is a spoonie ?

I HAVE played spoons with Mrs.Success :wink:



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Re: Can I answer your eye questions at ISNVD?

Postby DrDiana » Thu Jan 05, 2012 4:52 pm

A Spoonie? Oh, this I must answer now...

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
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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Re: Can I answer your eye questions at ISNVD?

Postby dlynn » Fri Jan 06, 2012 7:30 am

Hi Dr. Diana,
Thank you for taking our questions. Mine are:
1. What causes those flashing lights I see, like cameras flashing (but not as bright) usually in the morning?

2. What causes tiny bright white spots (like stars in the night sky) to appear when I turn out the light OR close my eyes to go to sleep,
then gradually fade away?

3. What causes, what looks like, splattered paint (fist sized) on a wall when I wake up in the morning? This doesn't happen every morning, but only
when I open my eyes in the morning? Usually lasting 2-3 seconds. They are sometimes colorful, and sometimes just black.

God bless!!
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Re: Can I answer your eye questions at ISNVD?

Postby Cece » Fri Jan 06, 2012 10:34 am

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

Colors are brighter - is that improvement from the eye or the brain?
My pars planitis has never been this quiet. Is that due to improved venous drainage of the eye? Will it last?
My prescription improved. Exactly how did that happen? Pressure changes of the shape of the eye after CCSVI treatment reduced congestion?
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? :)

(Great story about the spoons. Too true. I think of it as "push" as in how much push do I have at any point during the day, if I need to push myself forward into whatever needs doing? And I get tired of being pushed around, even if it's me doing the pushing! What can you do.)
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Re: Can I answer your eye questions at ISNVD?

Postby MrSuccess » Fri Jan 06, 2012 1:24 pm

so now I know what a 'spoonie' is ..... I think .....


I like playing spoons with Mrs.Success :wink:



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Re: Can I answer your eye questions at ISNVD?

Postby CD » Fri Jan 06, 2012 3:53 pm

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
Last edited by CD on Sun Jan 08, 2012 9:08 am, edited 1 time in total.
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Re: Can I answer your eye questions at ISNVD?

Postby Tore » Sun Jan 08, 2012 5:09 am

Hi Dr. Diana

I have kind of ligaments, on both sides.
They are transparent & tangled and actually not very disturbing.

2009 I had temporarily poor eyesight on the left eye and got glasses for that.

End of last year I was diagnosed with MS and was sent to see an
eye doctor, she said every thing was fine (except astigmatism in left eye).

VECP was normal.

Thank you & Greetings from Berlin
who wants to live forever?! - http://www.youtube.com/watch?v=_Jtpf8N5IDE&ob=av3n
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Re: Can I answer your eye questions at ISNVD?

Postby Cece » Sun Jan 08, 2012 9:00 am

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.
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