CCSVI treatment in Europe, help and advice needed

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

CCSVI treatment in Europe, help and advice needed

Postby NuccaPatienthere » Tue Aug 14, 2012 12:39 pm

Hi,

I’ve recently been diagnosed with MS following having a bout of double vision, which is the second occurrence I have had, the first being 4 years ago. I had MRI scans done on both occasions and I’ve been told the Brain lessons have got worse, although my MS is mild.

When I had first bout, I started seeing a NUCCA chiropractor after researching into MS and neck problems, which I have suffered ever since I had keyhole surgery on my shoulder. This is what I believe caused my MS, because before this I never had a single symptom and was as fit as a fiddle.

Although NUCCA treatment definitely helps me, I do think there is more to my problems so I want to have the Doppler test done to see if CCSVI could help me. From what I can gather IVUS is the gold standard so I assume I should go to one of these. I phoned Essential Health Clinic in Scotland today and they can no longer treat people following guidance from NICE, which I’m not too sure many people on here are aware of after reading other threads. They said it could be over a year until they can again.

Please could someone give me some advice/recommendations of where to go or even what you believe my next steps should be? Obviously I would like to pay as little as possible, as I’m quite tight, but at the same time I will not sacrifice quality over cost.

Any help is appreciated.

Thanks
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Re: CCSVI treatment in Europe, help and advice needed

Postby Robnl » Tue Aug 14, 2012 11:44 pm

In Holland there is a company called Privatescan that performs diagnosis/treatment in Belgium, Also Prescan does diagnosis and treatment...in Germany.

There are more clinics in Europe than the mentioned two...

Succes!!

Robert
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Re: CCSVI treatment in Europe, help and advice needed

Postby Cece » Wed Aug 15, 2012 8:12 am

EHC is not treating CCSVI anymore? That is news to me, and not good news.

If you have MS, I wouldn't worry too much about the doppler, because pretty much everyone with MS has CCSVI. So it might be best to be choosing your doctor based on what is offered for treatment. IVUS has been proposed as gold standard but it's also important to choose a doctor who is experienced with CCSVI. I am far more versed in the US doctors than in the European doctors. I agree about the importance of quality. The worst outcome is not 'no improvements,' although that's bad enough; the worst outcome is vein damage and occlusions and adverse events. I was well aware and worried about this when I was treated, and I still went for it because of the logical important of blood flow, and for me it's been a very good outcome, and I hope it will be a good outcome for you as well.
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Re: CCSVI treatment in Europe, help and advice needed

Postby Rici » Thu Aug 16, 2012 7:55 am

Hi
Medicover in Poland. 20 minutes from the airport. IVUS is. Dr. Jaworski after training with Professor Sclafani. Ok reasonable price 6.000 €. http://www.medicover4you.com/virtualtour/
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Re: CCSVI treatment in Europe, help and advice needed

Postby Rici » Thu Aug 16, 2012 8:23 am

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Re: CCSVI treatment in Europe, help and advice needed

Postby NuccaPatienthere » Thu Aug 16, 2012 3:38 pm

Thanks for your responses, how does Dr Beelen in Aalst, Belgium compare to Dr Jaworski, which regards to experience and success?

I'm not going to rush into a decision whether to have this done, as I'm reading mixed reviews and not sure whether the risk of vein damage or any other complications is currently one I'm willing to take.

I'm 30 years old and my symptoms are not as bad as the majority of MS sufferers, as i can still walk, work and lead a pretty normal life. Although i've recently been diagnosed i've know i've had it for years and if it wasn't for NUCCA treatment I know I would be a lot worse, because I was before I started to have it done. None of my friends and work colleagues have a clue I suffer from this and would probably think I'm joking if I told them, although they must wonder why I moan when the weather is hot, have a desk fan on full blast in the winter, started to eat a lot healthier and been mainly drinking soft drinks on nights out!
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Re: CCSVI treatment in Europe, help and advice needed

Postby blossom » Thu Aug 16, 2012 8:18 pm

QUOTE - I'm not going to rush into a decision whether to have this done, as I'm reading mixed reviews and not sure whether the risk of vein damage or any other complications is currently one I'm willing to take


you are young, your symptoms seem pretty much in control doing what you are doing, the research is ongoing with ccsvi. you say nucca is helping, dr. rosa's fonar upright mri study of upper cervical adj. is being done. there is much to consider. maybe for the time being if it's not broke-don't fix it. the best to you and your decision.
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Re: CCSVI treatment in Europe, help and advice needed

Postby Cece » Fri Aug 17, 2012 7:01 am

My impression is that Dr. Beelen has been doing the CCSVI procedure for longer and that Dr. Jaworski is newer to CCSVI.

I agree about the importance of minimizing vein injury. If the veins are not opened wide enough and reclose, they can always be reopened, but if they're damaged, then that is no longer true. There are doctors with more conservative techniques: using IVUS to diagnose and size, being cautious about oversizing, prescribing true anticoagulants post-procedure, prescribing anticoagulants for a longer period of time, stenting very infrequently, only ballooning if a stenosis is identified (there are some who have 'felt out' the azygous or innominate veins through ballooning), even suggesting bedrest post-procedure to keep the jugulars open, limiting the duration of the ballooning, not using high pressure balloons, not checking veins other than the azygous and jugulars because those were the only veins published on by Dr. Zamboni. I am trying to think of other conservative techniques. There was a time when I thought aggressive techniques like over-sizing was the best for everyone but then doctors started seeing scarring and injury in those patients. CCSVI is still a work in progress, and waiting is a reasonable strategy. I agree about gathering as much information as possible and that some of the information is conflicting.

I am curious about trying NUCCA, we seem to be hearing more and more about it. NUCCA can't clear an intraluminal abnormality from your veins, so if that's present, venoplasty would seem to be the way to go, but maybe NUCCA can improve the flow of cerebrospinal fluid which is important. Cheer mentioned in a different thread that we don't know how long NUCCA holds up? In some patients, the atlas goes out of alignment quickly. Just as after ballooning jugulars, some jugulars restenose quickly. Not everyone wins.

Are you looking for somewhere to get tested, and then have time to think through the test results before deciding whether or not to go ahead with it? You're not looking for the medical tourism all-in-one trip where you get diagnosed one day and treated the next. The issue is that the testing is imperfect and there are people who have negative ultrasounds but positive venograms once the procedure is underway. My own CCSVI was severe enough that it showed up on two pre-procedure ultrasounds, on an MRV, on the flouroscopy, and on IVUS! There was no missing my blockages, they were near-total blockages. So when the testing showed the severity, it did help me feel more confident about going forward with the procedure.

Good luck!!
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Re: CCSVI treatment in Europe, help and advice needed

Postby Robnl » Fri Aug 17, 2012 7:10 am

I heard that dr Beelen does not treat CCSVI anymore...
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Re: CCSVI treatment in Europe, help and advice needed

Postby Cece » Fri Aug 17, 2012 8:05 am

Dr. Beelen doesn't and EHC doesn't? What is going on. :(
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Re: CCSVI treatment in Europe, help and advice needed

Postby Robnl » Fri Aug 17, 2012 10:21 pm

Cece,

I think dr Beelen stopped because he could not go ' further' with ccsvi, jugs and azygos were treated. Research costs money etc etc

In 2011 I interested him and his colleague in ivus, with Dr Sclafani's info dr Maene treated me with ivus. I hoped that this would take them a step further, and they looked very interested. CCSVI treatment is an 'extra' thing for him it's not the main focus...

You can still do a checkup and maybe be diagnosed.
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