Yep, I had to google both of those too.
This is the latest fun diagnosis Emma has had for her ever worsening eyesight issues.
She's had all sorts of wonderful improvements since starting treatment with Dr Amir that I guess it's only fair that something else goes wrong somewhere!
This latest diagnosis was made last week by a consultant Opthalmologist at our local hospital. Hat's off to the guy he did actually thoroughly test Emma rather than the usual "It's part of her MS" diagnosis.
Every time we discuss eyes, my mind automatically jumps back to the improvements Emma and so many others received on the table during a CCSVI procedure. There must be a link. So when I asked the consultant what the cause of IO and his answer was vascular and nerve issues I was jumping all over the vascular bit and straight into a discussion about CCSVI and how so many people have had vision improvement.
He'd never heard of CCSVI but for a delightful change was open minded and willing to absorb and listen and promised to go away for the holiday weekend and read up about it.
I gave him details of this forum and suggested if he had any questions that Dr S was the oracle as far as TiMS goes.
So Mr Kumar, if you're reading this thread thanks for being open minded and at least having a look at CCSVI and it's possible connection with IO and other problems.
If anyone else has any experience of the IO diagnosis please chip in. In the meantime I'll update once we get any more info at this end. Next appointment in one month.
There is possible treatment for this condition by means of a botox injection to the muscle in the offending eye, the thought of which makes me cringe!
So far nothing has been discounted. In the same way I ask specialists to be open minded I try and stay the same way.CureOrBust wrote:do not discount that it could actually be "an MS thing" too quickly. A lot of what I read appears to reference MS and brain lesions.
We have a further consultation in a months time and we'll see what that brings.
IO is not uncommon in stroke patients (immediately after a stroke) - hence the strong vascular connection.
So I figured instead of asking the IR's for the answer I got the opportunity to ask an eye specialist.
The question to ask isn't "why does CCSVI treatment improve eyesight" but a more generic "why does a procedure to improve flow through the IJV's renal veins and azygos veins create improved vision in so many patients?" That removes the contentious medical procedure from the question and asks a direct anatomical question.
Hopefully we get someone looking at the question from the other side of the fence - and that can only be a good thing.
After a 15 - 20 minute exam she was diagnosed with http://en.wikipedia.org/wiki/One_and_a_half_syndrome.
It was then explained to Emma that there really is nothing that medicine can do to help this condition. Botox injections into the offending muscle behind the eye may or may not help and may or may not last a matter of weeks/months before repeat injections are required.
This is a blow, Emma had physically improved so much with Jaw and Atlas treatment from Dr Amir that finding regression in Emma's eyesight is frustrating.
Her last visit to see an opthalmic surgeon was coincidentally only a few weeks before Emma had CCSVI treatment in Scotland in 2010. Having read the notes on Emma's condition back then the orthoptist said she had returned to her pre CCSVI treatment level of eyesight.
This now brings up the obvious question in our minds. Do we now repeat the CCSVI procedure purely looking for eyesight improvement?
This is a big deal for us now as the procedure is no longer available in the UK, so our clinic of choice would be Dr Sclafani based on his standing within CCSVI and his contribution and willingness to communicate with patients on here. We also need to beg and borrow the money to do this - so cost is the number one issue for us.
When Emma initially had the CCSVI procedure in 2010 the eyesight improvements were the single biggest (and unexpected) improvement. The effects of this procedure lasted a little over 24 months before reappearing and 30 months before returning to pre procedure levels.
Emma was patient number 39 in Edinburgh, this was the infancy of CCSVI in the UK and pretty much worldwide and at the time they were being, quite rightly, cautious in treatment. To that end it is reasonable to assume that based on knowledge available now that Emma was under treated and that a repeat procedure may offer similar and hopefully more permanent improvements.
Would we be mad considering a CCSVI procedure simply to deal with an eyesight issue? This is a £10,000 ($15,000) punt on solving the issue. If it works it's money well spent, if it doesn't we'd be pretty frustrated.
No, that's not mad, because it worked once.EJC wrote:Would we be mad considering a CCSVI procedure simply to deal with an eyesight issue? This is a £10,000 ($15,000) punt on solving the issue. If it works it's money well spent, if it doesn't we'd be pretty frustrated.
Besides the eyesight getting worse, is there any reason to believe the veins have restenosed?
My eyesight improvements have continued, knock on wood. It seems that the venoplasty did something but what exactly? Improved venous drainage of the eye, since those veins flow into veins that flow into the internal jugular veins that were previously congested? If 1 1/2 syndrome is neurological, then it could be reversible or irreversible. If it's vascular then that too is either reversible or irreversible. A lot of help that is, sorry. Good luck with any decision. In the best of worlds, this would be covered under NHS, and fully researched to know exactly what the odds were of venoplasty helping eyesight in her condition. In the current world, it's speculation and what we have to go on is that the eyesight responded to the procedure last time around.
Each time we find ourselves in front of an eye specialist I ask them how improved blood flow (drainage) may help ease these eyesight problems.
I try my hardest to phrase the question in a way that doesn't include the letters CCSVI, in an attempt to remove possible prejudice.
I've had a range of answers from "I don't know" to "it's placebo you just think you can see better", but the most common suggestion (and that's all it is - a suggestion) is that improved blood flow and oxygenation of the muscles controlling the eye is easing the issue.
Here's an idea - maybe CCSVI is actually a procedure to help eyesight issues that also happens to alleviate some other symptoms historically associated with MS.
I noticed that a few of the eye conditions, from the link you provided, are possibly caused by ms. If CCSVI is related to ms, and all other
possible causes have been ruled out... I wrestle with this decision also. My eyesight had improved after my first procedure along with other symptoms, heat intolerance, fatigue, pain, balance etc. All my symptoms came back approx. 2mos. ago starting with vision,
"flashing lights" in the early a.m. then it subsides within an hour. My main concern this time is proper blood flow, I don't want to lose anymore function. I believe that if my blood flow is restored, my body will have a chance to heal and if it alleviates my symptoms, then,
I thank God! This is such a big decision. I wish you and Emma the best.
Dr Diana's reply on the Dr S thread was:-
Now my non medical mind had reached the same conclusion as her - lack of incoming oxygenated blood cause by poor drainage is troubling the eyes. In a nutshell.DrDiana wrote:Hi EJC,
I'm not sure what you mean by eye "syndromes", but I know that many people have brighter, clearer vision even on the table when they have their CCSVI procedure. I *think* it is from two mechanisms:
1) The same hypoxia that affects the brain also affects the eyes. We can see that when we look into the eyes. The arteries are too small, and the veins are too big. I had conjectured that endothelin 1 may be the cause of the arteriole constriction, but I'm considering other things, too. If venous blood is not flowing out (and often times CSF is not flowing out), something's gotta give, right? The skull is fixed. So either the brain gets squished (and sometimes a Chiari begins), or easier, the arterial blood has a harder time getting IN. So the vision dims. If angioplasty allows more venous flow OUT (or you do something to allow more CSF out), more oxygenated blood can go IN, brightening the vision immediately.
2) Blood thinners: this is one reason I ask the question. Most patients with EDS end up on blood thinners, and we get strokes easier (ditto M.S. patients). If we have narrowing, partial blockages, etc of venous blood outflow, do the blood thinners allow more blood to exit easier? I didn't get any effects from angioplasty beyond feeling clearer headed for a few days. My son received no improvements. BUT we weren't given blood thinners post-procedure. We are on them now and doing well.
I DO see a fair amount of adult onset strabismus (an eye turns, usually inward). Is that the syndrome you are talking about? High intracranial pressure can cause a palsy of the lateral rectus. Because EDS patients are loosey-goosey, we often wear soft cervical collars at night to allow for continued CSF drainage. Many of us use Diamox (it lowers the amount of CSF produced) to correct the symptoms of hydrocephalus -- including eye turns.
Hope that helps.
It just seems so logical.
Dr Sclafanis response to my question earlier is:-
That is not an easy question. Worth is something that only you can judge. Obviously, for a radiologist one's vision is priceless. The wonderful ophthalmologic response to angioplasty was very impressive. I am not sure of mechanism of neurological restoration. was it improved csf drainage or improved perfusion? Can we anticipate the same result? Impossible to predict. Better, worse no change
Let's not get into the fee speculation
So i guess i cannot answer your question for you
I'm not surprised to be honest. When Dr S doesn't know - he says he doesn't know and I respect that more than taking a wild guess.
I would really like to get someone of Dr S's mindset working with eye people - I'm not convinced the eyesight improvments are anything neurological based whatsoever but purely vascular. After all it isn't beyond the realms of possibility that Prof Zamboni has accidentally come up with a procedure to help eyesight issues whilst searching for relief of MS Symptoms. It sure wouldn't be the first time medical breakthroughs had been made in this way.
Ultimately to us this now comes down to cost sadly. I'm not going to enter a theoretical conversation about "worth" - it's a specialist procedure with limited availability and it has a price attached to it, it is what it is.
We have a history of improved eyesight from Emma's first procedure which, with the wonderful benefit of hindsight, was an undertreatment in Scotland (and rightly so - that is not a criticism).
So for £2000 would we go for a second procedure? Yes, I wouldn't even be asking we'd be booked in.
But it's not. Being in the UK our locality is no longer offering procedures so we need to travel. If we wanted to undertake the CCSVI procedure again we'd really want it to be Dr S performing it. So we have to travel to the USA on top of the procedure. This is when it mounts up and realistically it will cost us £12,000.
Now I'm of the opinion that your health is worth more than money, so I'm not averse to paying to go. Apart from one small problem - I don't have £12,000 and we'd have to borrow it or sell our car - or similar.
Then I start thinking, what if this works and lasts for another 24-30 months and we need to do it again - we won't have finished paying for the previous one.
Herein lies our dilemma and the fundamental reason we'd really like someone with an interest in Eye's and their mechanisms to really get stuck into this with someone like Dr S.
2005 preliminary report: Physio for ophthalmoplegia (A+++)
the initial find in context (third one - kawahira et al)
take control of your own health.
pursue optimal self care, with or without a diagnosis.
- Similar Topics
- Last post
- 2 Replies
- 880 Views
Last post by Bobjones
Tue Feb 25, 2020 8:47 pm
- 17 Replies
- 3776 Views
Last post by jimmylegs
Fri Dec 21, 2018 3:33 pm
CCSVI in MS reviews
Last post by frodo « Fri Aug 17, 2018 2:07 am
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Fri Aug 17, 2018 2:07 am » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 0 Replies
- 2151 Views
Last post by frodo
Fri Aug 17, 2018 2:07 am
Ccsvi still alive
Last post by frodo « Tue Mar 17, 2020 2:22 pm
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Tue Mar 17, 2020 2:22 pm » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 0 Replies
- 686 Views
Last post by frodo
Tue Mar 17, 2020 2:22 pm
- 0 Replies
- 152 Views
Last post by frodo
Thu Jun 04, 2020 12:39 am
- 0 Replies
- 2238 Views
Last post by Cece
Sun Dec 16, 2018 12:25 pm
Last post by patientx « Tue Jun 09, 2020 10:46 pmReplies: 3
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Mon Feb 25, 2019 2:13 am » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 3 Replies
- 1904 Views
Last post by patientx
Tue Jun 09, 2020 10:46 pm
Bosentan and chemical CCSVI
Last post by ThisIsMA « Tue Jun 16, 2020 9:25 amReplies: 1
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Fri May 08, 2020 3:48 am » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 1 Replies
- 197 Views
Last post by ThisIsMA
Tue Jun 16, 2020 9:25 am
eye research supporting CCSVI
Last post by ThisIsMA « Thu Jan 10, 2019 12:28 amReplies: 1
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by Cece » Sun Dec 16, 2018 12:38 pm » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 1 Replies
- 2505 Views
Last post by ThisIsMA
Thu Jan 10, 2019 12:28 am