CCSVI- just the facts, ma'am

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

Postby mrhodes40 » Wed Nov 18, 2009 8:31 am

These technicalties are frustrating because we, as lay people, do not know exactly what the skills require to read the things correctly, and if you've had dopplers it doesn't "look" that hard or difficult: the screen shows either blue or red depending on direction of blood flow. It SEEMS like it is a simple thing either the blood is going where it is supposed to in a laminar way or it is not.

However this is not apparently correct.

The thing my mind keeps coming back to is this: my dopplers were totally and completely normal as done and read by a standard trained doppler tech.

We already KNEW that I had severe stenosis in my jugs at the jawline becaues a scheduling snafu sent me to MRV first; both jugs were 80-90% blocked, mere slits.

If turbulence should be detected distal to the stenosis, then my doppler lady may be the example others will meet. First my lady knew ahead of time this was a total waste of time and argued with Dr D and I that blood goes up and down all the time and it is totally normal and meaningless,
Second she did the doppler of my neck after I had already had an MRI MRV and we KNEW that I had severe stenosis right at the jawline in my jugs. When she was dopplering along and saying in a crabby way "well, this is totally normal there is no reflux or stenosis here at all..." I said we already had an MRI I have severe stenosis. She said "YOU CAN"T because if you did I would see turbulence on the doppler"

In a contest between a MRI picture that is clear and Ms Grumpy and her 'interpretation', which is correct?

It is obvious that what are considered good and normal doppler skills and interpretation leaves something important out.

That is all I know.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby cheerleader » Wed Nov 18, 2009 9:55 am

Marie's right....
Jeff had the exact same thing happen at Stanford- he already had stenosis shown on MRV, but the cute doppler guy said he looked fine.
I believe we'll find one potential missing link is the transcranial doppler. In many MS patients the turbulence and reflux is going on up ABOVE the stenosis, into the jugular foramen and into the brain. Inaccessible to neck doppler. Think about it...in white water rafting, the white water is ABOVE the rocks...it hits the obstacle and heads upriver. This is why the Zamboni protocol uses the neck doppler AND transcranial doppler. And Dr. Dake is an expert in MRV technology- this may be another piece of the puzzle.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Wed Nov 18, 2009 1:12 pm

I only had the neck doppler, no-one in the UK could organise the trans-cranial for me...so I a bet you are right Cheer, that the refluxes are probably higher than what the neck doppler can pick up in many people.

x
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Postby CureOrBust » Thu Nov 19, 2009 12:25 am

I had the neck AND transcranial doppler. They found the reflux in my neck (internal jugular valve), but none in the transcranial tests.
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Postby whyRwehere » Thu Nov 19, 2009 1:49 am

I like the white water analogy....I can just picture that so well.
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Postby sou » Thu Nov 19, 2009 9:01 am

I think that an occluded jugular vein will always lead to reflux in the great vein of Gallen and, ultimately, to an increased load of the vertebral veins.

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Postby acol » Sat Nov 21, 2009 4:44 am

I was just wondering whether or not there is any correlation between the side of the body where stenous is found and the side of the body which most features the physical disability? Probably a stupid question but it has often intrigued me that more women than men (at least in the samples I meet) are more disabled on their left side and vice versa.
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More women than men

Postby Dovechick » Sat Nov 21, 2009 5:11 am

I was pondering a similar question, why are more women than men afflicted with MS. At least that question may be related to relative size.

I think that Cheerleader's notes on the conference last semptember mentioned the fact that embryologists were present and making a contribution to the discussion. So obviously the questions are being asked by the people in the know too.

I don't know the answer to your question Nigel, but I'd like to. Assuming that it is the right side of the brain which is affected resulting in left side disability this would mean that something may be happening to the right hand side of the circulation of the head.

I know that small veins, arteries, ear canals, sinuses runs in the females of my family, so why not the veins draining the brain.
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Postby acol » Sat Nov 21, 2009 5:46 am

Hi Dovechick

I'm fairly new to this site and still feeling my way. There seems to be quite a sizeable number of posters from the UK. At some stage it might be useful to have a specific thread devoted to people in the UK who are trying to get treatment for CCSVI. I know that there is a dedicated thread created by GiCi for the first person in the UK who had the 'liberation procedure'. Perhaps we could use that thread? I think it would be interesting to get some ideas of the number of people in the UK who are trying to get this treatment.

On the other hand working independently does, arguably, have the advantage of spreading the new 'gospel' and forcing key professionals to begin to understand what is happening in the wider world. What do people think?
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Postby gibbledygook » Sat Nov 21, 2009 6:32 am

Many women "suffer" from low blood pressure. Typically this is seen as a good thing but it may make reflux back into the brain more likely as well as hypoxia. Professor Dake mentioned that many of the people he was seeing had low blood pressure.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby acol » Sat Nov 21, 2009 7:07 am

gibbledygook

That's really interesting. I used to have very low blood pressure when I was a lot younger. I can remember thinking that was a good thing - but now I'm not so sure. Various events in life have no doubt increased my blood pressure but the damage probably occured at least 20 years ago.
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Postby Dovechick » Sat Nov 21, 2009 7:10 am

acol wrote:Hi Dovechick

I'm fairly new to this site and still feeling my way. There seems to be quite a sizeable number of posters from the UK. At some stage it might be useful to have a specific thread devoted to people in the UK who are trying to get treatment for CCSVI. I know that there is a dedicated thread created by GiCi for the first person in the UK who had the 'liberation procedure'. Perhaps we could use that thread? I think it would be interesting to get some ideas of the number of people in the UK who are trying to get this treatment.

On the other hand working independently does, arguably, have the advantage of spreading the new 'gospel' and forcing key professionals to begin to understand what is happening in the wider world. What do people think?


Hi Acol,

I've been aound for a while but on another forum, so am a newbie to this one. I know of and have corresponded with three other UK members who have or are currently going through the procedure. Gici has had his procedure done in Belfast (UK) but he is a special case as he is a doctor himself and managed to convince some colleague to do that procedure for him. These doctors/surgeons have declined to do any more at present.
So the other two people I have corresponded with have had to consult Dr Simka in Poland, (the same doctor who did Erika's Liberation).
The two other members are LR1234, who obtained her MRV privately (in other words she paid for it herself) in the UK having failed to convice any one in the NHS that this would be necessary for her treatment. The people who did her test said there was nothing wrong with her veins, but she sent the images to Dr Dake who identified some problems. She is undergoing the procedure around now. The second member I have been in touch with is Wonky1 he is going to Poland in the beginning of December and I am hoping that Ella might make it in December also as I have been in touch with Dr Simka and told him I would like to have the tests done in Poland as it seems that no one in this country is trained to identify the areas of difficulty.

Unfortunately the NHS is not going to pay for any of this treatment at present, so we are all having to pay for the procedure out of our own pockets. I imagine that in the future this procedure will be available in the UK under the National Health Service, but it will take a while and we don't have time to waste... Ella is still steroid responsive, but I don't know for how much longer...

So maybe the thread should be centred around the location of the procedure rather than where the members live. What do you think?
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Sat Nov 21, 2009 8:32 am

Hi Doverchick

During the last few weeks I have had discussions with GiCi and he was very helpful in giving me information on his recent procedure in Belfast - the 1st UK liberation procedure. I am also aware of Wonky1 and am pleased that he will be going to Poland for his test. In due course I may well have to follow this line which seems a very sensible course to follow.

LR1234's situation worried me a great deal because I had assumed that the MRV was the gold standard in identifying the problem. It seems that this test also has a degree of dependency on the operator. It goes without saying that the vascular surgeon needs to be able to interpret the findings in a professional way - which apparently didn't happen in her case. Unfortunately, going to Dr Dake in the US will not be an option for many people in the UK because of the huge expense. US health costs have always been expensive but we are now talking about costs of around $80,000 and that is assuming that there are no complications.

Homefront was trying to pursue treatment for his wife through his GP, which is the course that I am taking in the short term. I will report back if I get something positive.

Nees is another member living in the UK trying to get treatment - unsure of his/her current situation.

Gibbledygook has been a member of this forum since 2005 and bravely pursued his case for treatment by Dr Dake privately. I think the treatment he obtained is now substantially more costly.

As soon as we get more publicity for CCSVI we will be in a stronger position to campaign more vigouressly for these procedures to be carried out on the NHS. After all - we have all paid for this service through our taxes in the same way that people pay for their health insurance. I don't think we will have any real difficulty with the NICE - our rationing body. This treatment will be very cost-effective when compared with expensive drugs or social security payments for people who cannot work as a consequence of disability.

However, in the short-term there may well be the need for carefully constructed letters to be sent to appropriate Primary Care Trusts.

You are probably right in suggesting that the thread should be centred on the location of the procedure rather than where the members live. I was just trying to get a better understanding of the number of people who belong to this board and are resident in the UK. I attend a fairly active MS Therapy contre in Wendover, Buckinghamshire. There about 500 patients using this centre but as far as I am aware I am the only person who uses this website. A sizeable number will have read the recent article in the 'Pathways' magazine. However, that article has not provoked much debate. Maybe this situation will change in the very near future?
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Liberating the UK

Postby Dovechick » Sat Nov 21, 2009 9:28 am

Nigel,
You may have noticed that the more advanced the disease the more lethargic the person becomes. When Ella is unwell she leaves everything to me. I think I can see the possibilities better than she can. I waited a couple of days after I had discovered this procedure before tackling it with her (so I could keep myself under control) and then when I did put it to her I put it as a question: how would you feel if you could put a halt to relapses and progression? From my experience of therapy centres many of the people suffering from MS have given up and it is only if there are people around them who are not prepared to do nothing that things start to happen.
It was Wonky1 who wrote the New Pathways story, Ella has also contributed in the past when she was doing the antibiotic protocol and she also raised funds for MSRC by doing a skydive. I think that once we have been through the procedure we will all have to write about it, and put something on Facebook and Youtube.

I'm not sure if Ella is even going to say anything to her doctor or her MS nurse. She might tell her physiotherapist who is much more patient centred that the others. It appears to be much, much cheaper at present in Poland than it is in the states which is why we can afford to do it even including the travel, car hire and hotel bills. I think it was LR1234 (Leanne) who said that doctor Simka might write a reference to a person's doctor to enable the treatment to be paid for by the NHS on the reciprocal health insurance system in Europe, but to be quite honest I would rather speed things along and do the whole thing in one go rather than wait for the wheels of the NHS to turn. Ella is at a critical point in her disease progression and the sooner we can put a halt to it the better her life will be.

My husband had a bone marrow transplant not so long ago and there is no way we could have afforded that, but this we can afford easily (well reasonably easily) and as you say this would save the NHS and the Social services a packet.
:roll:
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Sat Nov 21, 2009 10:49 am

Dovechick wrote:You may have noticed that the more advanced the disease the more lethargic the person becomes.


Michelle

Yes, this is something that I have noticed in quite of few people with MS. However, on a personal level I try hard not to let this happen. The few MS Society meetings that I have attended have too many people in this category. My local MS Society met once a week to eat cakes and tea - not for me!

The Centre that I go to was initially federated to MSRC which has a much more positive outlook. The Centre is very firmly based on the need to exercise and do physio. I was simply making a comment that generally speaking there is currently little mention of CCSVI - which surprises me!

I too am at a critical stage with my MS. I recognise that if I don't do something fairly soon I will be completely dependent upon my wheelchair. I cannot waste time while our Health Service procrastinates. Physiotherapy has helped me enormously but the left side of my body is getting very weak. I will give the NHS a few weeks to do something but if that leads me up a cul de sac I will try the Polish route. If I went that way I would be inclined to have the whole procedure in Poland rather than try to just get the tests done there. As you say, the total costs don't appear to be too expensive. I was lucky enough not to get ill until relatively late in my career.

On another thread I recounted the reaction that I got from my neurolgist - very luke warm! I specifically asked her if she still thought MS was an auto-immune disease - 'of course' being the reply! Thanks to a posting by 'Mrhodes40' I saw an article about Professor Prineas receiving the prestigeous 2009 Charcot Award. Professor Thompson added his congratulations. I am a patient at Professor Thompson's clinic. I can only presume that Professor Thompson doesn't share Prof Prineas's new view of MS or that recent events have yet to filter down the line. Is it any wonder that so many MS patients have jaundiced views about neurologists in general?
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