Optic Neuritis and CCSVI

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

Optic Neuritis and CCSVI

Postby Rieja » Thu May 27, 2010 6:36 am

Hi All

My questions come from the angle of Optic Neuritis (ON) and those of you have had the Liberation treatment done.

Personal Hx: 2 years of optic neuritis in rt eye when my body is overheated/heat intolerance. Be it from excercise, hot showers/baths, and environment. Typical functions of the eye are "normal" when the above conditions are not true. I also have more MS issues but I want to focus on this.

When I first began losing sight in my eye I was not yet Dx with MS. I went to my optometrist and she was baffled for a bit but mentioned that pressure in the surrounding veins may do that to peoples vision. I was tested but no one could find any issues. She then pointed to MS as a factor so I went to my PCP. Of course this all lead to my DX with MS. I never went back to my optometrist. The vein pressure thing stuck with me though.

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Based on Aprils 2010 webcast, it seemed to me that Dr Zim was looking for a connection between the jug veins and ON. I think he mentioned that the vein on the same side as the ON had blockages or stenosis. Please correct me if I am wrong.

Whether I misquoted or not, has anyone had any range of success with their treatment and ON? And was the angio/stent placed on the same side as the ON?

I looked through the outcomes thread and other areas but the threads tend to veer off from the subject or not enough info was gathered.

Thanks!
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Postby mila77 » Thu May 27, 2010 12:12 pm

Hi Rieja,

I had optic neuritis of the right eye 13 years ago. It was my first onset of the desease, but since that time, I had no problems with the eyes. All my relapses showed symptoms of mild numbness 90% on the right side and maybe 10% on the left.

What you say is really interesting.

I had liberation tratment done at Euromedic, Katowice and it turned out that my right internal jugular vein was severly stenosed, ballooning did not hold up so I was given a stent. I was not expecting to have such a big narrowing as I am 100% functional and my MS is rather mild so far.

Left vein was better and ballooning was enough.

So maybe there is some truth in it. If u have stenosis on right side, your symptoms will also appear on the right side.

Mila
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Postby Rieja » Thu May 27, 2010 12:40 pm

Thanks for your response mila77.

I have heard that stenosis on a side usually (not always) correlated with symptoms. In my particular case, I do have right side issues with my leg as well as the eye.

When I do get diagnosed, I want the tech or Doc to pay particular attention to that side AND to the right internal jugular if there is a connection. This thread is to help me, and others if they wish, to get a better idea if there is that correlation or not - and how to approach the specialists.
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Postby Cece » Thu May 27, 2010 12:51 pm

I have primarily right side issues. From my eye to my foot drop. I am curious too if I will turn out to have worse stenosis on that side.
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Postby ErikaSlovakia » Thu May 27, 2010 12:59 pm

Cece wrote:I have primarily right side issues. From my eye to my foot drop. I am curious too if I will turn out to have worse stenosis on that side.

I had it on left side including ON, I had pathological valve on left side. My vision is still as bad as before the treatment. On the other hand it is not worse at all.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby colapesce » Thu May 27, 2010 2:02 pm

Almost all of my symptoms are on my left. Yet, right side was critically blocked, azygous 70% and left 70/80% in 3 places. About 1 month before procedure my right side was becoming troublesome. Not sure how or where this fits in but thought I'd share anyway :)
I have ON in the left side which is better some days. It's only 2 or 3 weeks since I had the procedure though so hopefully it'll improve soon because it's really annoying! Right side symptoms that I mentioned were weakness and tingling and have completely recovered!
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Postby esta » Thu May 27, 2010 2:14 pm

hi all
i had ON on my right side but most severe symtoms on my left. liberated 3 weeks ago, anjioplasty on right jugular. my r eye is different, but to-date not sure if improved - it might be my old glasses are wrong now!
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Postby kc » Thu May 27, 2010 3:07 pm

Fascinating subject. I have had ON on the right and much worse disability on the right. After 5 or so years my left leg became weak and spastic. I have not been liberated yet but do plan to make sure my right ijv is scanned very closely.

Interestingly, once in a while my left foot "opens up" and it feels somewhat normal, this has never happened on my right side.

I think there is something to this.

kc
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Postby pklittle » Thu May 27, 2010 7:47 pm

I had ON on the left years ago. Most of my MS symptoms are on my left side. That and balance. :cry:
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Postby mangio » Thu May 27, 2010 8:26 pm

I know this is abit off-track but a health professional blogging
from overseas today states her eye color has changed post liberation.
Really interesting.
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Postby sbr487 » Fri May 28, 2010 1:44 am

I would like to digress a little bit ...

Does anyone think that optic neuritis can be used as a factor to decide if Jugular veins have narrowing?
Put differently, if optic neuritis is absent, it would indicate that there are less chances of Jugular vein narrowing ...
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Postby Rieja » Fri May 28, 2010 11:54 am

Fantastic questions and info.

I would ask that those that are going for diagnostic and/or procedures ask the doctor about this issue.

Even if you do not have ON, getting results on the jugular veins would be good!
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Postby smokey » Fri May 28, 2010 4:25 pm

My first symptoms was ON in the left eye. I was found to have a narrowed jugular vein, in two places, on the left side.
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Postby Rieja » Thu Jun 03, 2010 8:28 am

Again interesting.

What stinks about threads is that there is no real way to capture data and make it useful. I would HOPE BNAC is testing this theory.
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Postby Vhoenecke » Thu Jun 03, 2010 9:25 am

mangio wrote:I know this is abit off-track but a health professional blogging
from overseas today states her eye color has changed post liberation.
Really interesting.

I am so glad that someone said something about this eye colour change. My eyes have changed back to their original green-hazel that I had in my teens. I think this is a blood flow thing though and not ON. Reasons: my face colour has improved as well, I didn't notice my eyes until my husband said something. He was scared to say anything in case people thought he was crazy but after looking my mom and children agree with him.

Optic Neuritis is tested in Poland before you have surgery, I am very glad about this. My ON was not very severe but there was red on the test sheet that indicated ON. Some of the other people treated at the same time as me had severe ON where the picture was mainly red. I would like to see if there is improvement in the future. Thanks for letting me ramble.

Val 8)
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