Optic Neuritis and CCSVI

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

Postby Daisy3 » Thu Jun 03, 2010 1:08 pm

Don't some people have nystagamus not ON?

Anyone had the procedure done with Nystagamus rather than ON?
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Postby LR1234 » Thu Jun 03, 2010 1:18 pm

Yes, my nystagmus went for 3 weeks after procedure and I know this because when I read small labels in the supermarket my eyes have horizontal nystagmus, after the procedure I tested this out and it had gone. Its back now though:( (but I am sure I have restenosed)

I don't think I have ever had ON, I have had some pain behind the eyes.
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Postby TMrox » Thu Jun 03, 2010 3:19 pm

Hi Rieja,

I have Transverse Myelitis (not MS or ON). I had the liberation treatment two months ago.

Among my most disturbing symtoms were spasms, daily migraines exclusively on the left side and hypersensitivity along the left arm.

I had 90% stenosis in the left internal jugular vein (coincidentally just below where I have my TM lesion) and 100% stenosis in my azygous vein.

My daily migraines were gone right away after the liberation treatment. Other symtoms (fatigue, hypersensitivity and spasms) have improved gradually. You can see about my case at:http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921

I've been tested for ON twice, and so far all test have been negative.

Keep well :wink:
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Postby garyak » Thu Jun 03, 2010 8:09 pm

My first symptom was also ON. This is very typical of MS. I am an Optometrist myself with MS who has had Optic Neuritis.
To test whether there is vision improvement post liberation I recommend four different tests be done before and after.
1) Have your eyecare practitioner accurately measure visual acuity before and after.
2) Have a Humphrey visual field test before and after.
3) Consider having a test called a Visual Evoked Potential done before and after. This test determines how fast the transmission is along each Optic Nerve and is very sensitive for vision loss from even mild ON.
4) A red cap desaturation test. This can be done on your own. Here are some instructions I copied off the internet;

"The optic nerve is sensitive to red, so when it is damaged, red-colored objects may appear washed-out or faded. Some patients who have optic neuropathy describe a red color as appearing orange or pink.

To test for red desaturation, cover the patient’s weaker eye (if there is one) and ask him or her what color object you are holding. Typically, a red-topped dilating drop bottle can be used for this test. Then, ask the patient to cover the other eye and describe the color relative to the fellow eye.5

Optimally, you should ask the patient to quantify the percentage of red desaturation. For example, if the patient says an object looks 100% red with the stronger eye and 70% red with the weaker eye, record that the patient has a 30% red desaturation in the weaker eye."

As far as eye color changing, I hear patient reports where they claim their eye color ( Iris color ) has changed. This is very subjective and one can be easily fooled into believing something or an event has changed their eye color. Normally there has been no real change unless it can be documented by accurately matched close-up photos before and after in such a way that lighting , contrast etc is the same on both sets of photos. If there is a true change it would most likely be due to a difference in blood flow through iris vessels but only in a blue or green eye. ... my thoughts, gary
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Postby mangio » Thu Jun 03, 2010 8:34 pm

Thankyou for the list. Some of the eye clinics here suggest an exam
of the optic disc as well.
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Postby garyak » Thu Jun 03, 2010 8:46 pm

mangio wrote:Thankyou for the list. Some of the eye clinics here suggest an exam
of the optic disc as well.


That's a good suggestion. The test can be done by an instrument called an OCT. I didn't include it becuase I feel that actual changes to the disc ( the end of the optic nerve where it enters the eye ) might not change as much as actual vision measurements.
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Postby PCakes » Thu Jun 03, 2010 10:28 pm

Hi again Garyak..i am familiar with the red cap test ..what if you see reds fine but yellows vary between eyes? same thing?

Thanks
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Postby Badger » Thu Jun 03, 2010 11:28 pm

I have optic neuritis in my left eye and after my procedure in March, I noticed a slight improvement.

I have since been taking my driving lessons and my instructor advised me to go to the optomitrist. I have and she has prescribed me glasses for driving.

I never had a blocked jugular vein I had a blockage in my Azygos vein.
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Postby garyak » Fri Jun 04, 2010 9:54 am

PCakes wrote:Hi again Garyak..i am familiar with the red cap test ..what if you see reds fine but yellows vary between eyes? same thing?

Thanks

Color contrast in general will be affected including other colors like yellow, blues etc. Red is usually most affected thus the red cap test.
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Postby Rieja » Fri Jun 04, 2010 10:39 am

Thanks for the info garyak. I am going to take this with me to my Optometrist.

Badger, thanks for the info. I'm guessing that even without a blocked jug ON still happens. Would be neat to see a corrolation.
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Postby Cece » Fri Jun 04, 2010 2:35 pm

garyak, could you repost that to Dr. Sclafani's thread or give permission for someone to copy it over? Awhile back he was listening to suggestions on trial design and these are great suggestions.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby garyak » Fri Jun 04, 2010 5:33 pm

I will do that .
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Postby Cece » Sun Feb 20, 2011 3:09 pm

garyak wrote:My first symptom was also ON. This is very typical of MS. I am an Optometrist myself with MS who has had Optic Neuritis.
To test whether there is vision improvement post liberation I recommend four different tests be done before and after.
1) Have your eyecare practitioner accurately measure visual acuity before and after.
2) Have a Humphrey visual field test before and after.
3) Consider having a test called a Visual Evoked Potential done before and after. This test determines how fast the transmission is along each Optic Nerve and is very sensitive for vision loss from even mild ON.
4) A red cap desaturation test. This can be done on your own. Here are some instructions I copied off the internet;

"The optic nerve is sensitive to red, so when it is damaged, red-colored objects may appear washed-out or faded. Some patients who have optic neuropathy describe a red color as appearing orange or pink.

To test for red desaturation, cover the patient’s weaker eye (if there is one) and ask him or her what color object you are holding. Typically, a red-topped dilating drop bottle can be used for this test. Then, ask the patient to cover the other eye and describe the color relative to the fellow eye.5

Optimally, you should ask the patient to quantify the percentage of red desaturation. For example, if the patient says an object looks 100% red with the stronger eye and 70% red with the weaker eye, record that the patient has a 30% red desaturation in the weaker eye."

As far as eye color changing, I hear patient reports where they claim their eye color ( Iris color ) has changed. This is very subjective and one can be easily fooled into believing something or an event has changed their eye color. Normally there has been no real change unless it can be documented by accurately matched close-up photos before and after in such a way that lighting , contrast etc is the same on both sets of photos. If there is a true change it would most likely be due to a difference in blood flow through iris vessels but only in a blue or green eye. ... my thoughts, gary

This is a great older post, Gary, and relevant to recent experiences of my own.

To my own perceptions, my iris color has changed as has that of friends and family with blue eyes. I believe this is due to color perception on my part, not any physical change in my irises or theirs.

If I were to attempt to quantify the red desaturation now, it depends on which red is used, but I have seen some reds that are at about 300% saturation from what I am used to. Both eyes are seeing this equally.

I've had a VEP done, but that was 2 - 3 years ago. Not feeling a need to have one again, also improvements could be due to healing in those 2 - 3 years? I did have some abnormalities.

My optometrist today measured improvements in my vision first with the autorefractor machine, then backed up with the usual "which is clearer 1 or 2" discussion. I left with a prescription changed for the better, from -4.75 to -4.5 in my right eye. This is one week after my procedure. I am wondering just what that autorefractor is measuring? A search says it measures how light is changed as it travels through the eye. Any ideas on why CCSVI treatment would affect this? If my vision improvements had been strictly through the "which is clearer" test, I'd have chalked it up to the optic nerve being healthier, but the autorefractor is not measuring the optic nerve in any way.
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Postby CureIous » Sun Feb 20, 2011 4:54 pm

Still a great thread, thanks for the bump. I know that my ON would come and go and was especially heat sensitive, but had no idea about the color changes until I went into Costco when it was getting bad, this being some months prior to finding out about CCSVI (in 2009), but wasn't sure if it was age or whatever going on, as had not seen any optometrist since my initial presenting diplopia in 2004.

She examined my eyes and all that, and did the red cap on the bottle test, which REALLY shocked me, it was so obvious, but I just never noticed it before. I found myself looking at everything with one eye, then the other, traffic lights, signs, you name it, and sure enough that right eye was seeing muted colors vs. the left. I'd guess 30-40% vs. the left, and especially on red and green and blue. I was happy she showed me that, as it was a good marker for me to check out periodically in various lighting conditions.

All I can say is, since the op in August 2009, I periodically check for color differences in a variety of lighting conditions, and so far so good, just no ON/color change issues to speak of, and I check it too when the summer heat was at it's worst (105-108 F) and I was outside, nothing. Unquestionably pre-op, heat would almost instantly cause my eye to go wonky, including nystagmus which was present from my initial presenting symptom of ON in 2004.

Also, I know my last EVP at the neuro (post op) was compared vs. the baseline from 2008 and was the same, no change good or bad. Not going to read too much either way into that, as it was only 7 months post op, but when I get my insurance back next month, will go to see the neuro again and maybe get another one just for giggles, there's just not a lot of objective testing to do on me, so will be interested in comparing now at 18 months, the neuro seemed tickled just to have it stable, once again not going to ascribe to CCSVI treatment per se, just intrigued is all.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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