Bringing Liberation to the UK

[DippyD]

Ditto bump ditto ditto!!!

I think we all at least need to see our GPs and bring this to their attention.. I did, last month, and tho' my GP hadn't heard of CCSVI, now she has. I'm pleased to say that she is extremely interested and glad that finally something positive is being done for MS, and has referred me to a vascular surgeon, in the UK, whom I am seeing next month..
I agree with Dovechick that specific training is needed, but in the meantime, by seeing our GPs and others, at least it's getting the right people talking about it, discussing it, reading about it, doing something about it!... and news spreads, eventually!
Who knows, maybe some of these very people, when they see for themselves, will be the ones to get the wheels moving over here amongst the Powers That Be...

Count me in BTW!!!
x

[Ana]

Hi,

I'm from Germany and we had/have the same situation here, especially a very harsh statement of our MS society which considers Prof. Zamboni's studies "unethical" and "worthless".

But we've already changed a bit the situation to the better. We wrote to a lot of clinics to get them interested in at least the scans and MRIs based on Prof. Haacke protocol. We got some negative answers but finally the universities in Jena and Frankfurt a.M. have started doing the MRI scans and got in contact with Prof. Haacke.

I would recommand that you'd better not concentrate on London and/or on the neuros, but write to the radiologists and the vascular surgeons. They are the people which made Jena and Frankfurt possible. Moreover if I were living in the U.K. I would check the other big cities with universities like Birmingham, Edinburgh or York. They might be more open-minded than the establishment in the capital. Also in Berlin, the German capital, the interest for CCSVI isn't big.

There might even be a chance that some day they'll do the liberation procedure in Germany in case of many tested people have CCSVI.

I keep my fingers crossed for you.

Ana

[Dovechick]

Yes Ana, I agree, not the neuros. But I have sent information to neurovascular surgeons, vascular research centres, the UK MS society and research centres concerned with neurological research (not excluding MS) . How effective this has been I'm not sure but the MS society has shifted its position quite a lot since the beginning of the month so maybe our drip drip drip will eventually bear fruit.

[Johnson]

Yes Ana, I agree, not the neuros. But I have sent information to neurovascular surgeons, vascular research centres, the UK MS society and research centres concerned with neurological research (not excluding MS) . How effective this has been I'm not sure but the MS society has shifted its position quite a lot since the beginning of the month so maybe our drip drip drip will eventually bear fruit.

I surely think so. This has come such a long way since cheerleader found Dr. Zamboni, then Dake, all of some 7 months ago (is that right?), for her husband. It is just a month since CTV did their piece, and since most of us reading here had any dream of something so huge. Already, that drip, drip has become a wave - that is building.

My end-of-year prediction is that next year at this time, the studies will have been fast-tracked as hundreds, or thousand have their veins opened up, and the millions who are waiting (and 10 family/friends of each), rise up and demand it. The neurologist, and immunologist, and phlebologist will continue with trying to find the initial mechanism(s), but it will be realized that making us wait, to satisfy their academic curiosity, is cruel.

[LSITC]

have made an appointment with GP to discuss CCSVI. Fingers crossed he will listen. Also trying to locate knowledgeable vascular consultant thru "back door". Will post any info I find.
Merry Xmas

[cheerleader]

Hi,
I would recommand that you'd better not concentrate on London and/or on the neuros, but write to the radiologists and the vascular surgeons. They are the people which made Jena and Frankfurt possible. Moreover if I were living in the U.K. I would check the other big cities with universities like Birmingham, Edinburgh or York. They might be more open-minded than the establishment in the capital. Also in Berlin, the German capital, the interest for CCSVI isn't big.

There might even be a chance that some day they'll do the liberation procedure in Germany in case of many tested people have CCSVI.

I keep my fingers crossed for you.

Ana

Ana is absolutely right! This will be the way....it's an end run around the MS industry. We have to find the doctors who will benefit from this paradigm shift, and they are interventional radiologists, vascular docs and neurovascular surgeons. And many of them work at the larger universities and will be very intrigued in this research, especially if you can get them to read it and note the other doctors involved. Dake and Haacke are highly respected, oft-published and guests at many international conferences. Has anyone brought the research to Imperial College, London? They are involved with the Charing Cross Vascular Symposium where Dr. Zamboni and Dr. Dake met last April.
cheer

[Dovechick]

Yes I sent the information to several docs, professors and phd researchers at Imperial College.

[colmmc]

Sorry for the Delay in my Petition to No 10 but I guess I must be a crank!
they rejected my Petition so I have had to reword it .So back waiting.
I will be back as soon as I hear.

[SkallyWags]

Hi BodgeIT,

Great idea, there is power in numbers! Count me in. I have no idea how best to approach this though.

My husband has PPMS. We tried to get a referral for doppler ultrasound of the jugular veins from our GP. He tried his best but the radiology department would not accept a refferal for such a specialised scan from a GP, they want a neurologist referal.

My mother-in-law has some contacts at a private hospital and has managed to get us an appointment with a radiologist on 31 December - hopefully we will get an MRV - but I dont know where we will go from there.

I will try to get a contact in the vascular department there. Maybe we need to lobby vascular departments at private hospitals and universities to get them to start an exploration - just scan those with MS to see for themselves whether there is a correlation.

If you think that is the right road, maybe we can start with compiling a list of addresses for vascular departments at university hospitals, between us we can find a contact in the department and send them information on CCSVI and the Liberation Treatment with names and addresses of those people willing to have the scan?

Am really hopeful that CCSVI is the answer.

[Dovechick]

Skally wags...There is a firm of doppler equipment providers trying to get several radiologists interested in getting the training to do the necessary scans on a private basis. According to the man I have been speaking to this is the best way to get started. The ultrasounds would not cost a great deal (£100-£200) but these things take time. I keep emailing him every week to keep him on the case and if it is OK with you I will send the body of your message to him to make him aware of the need...

[SkallyWags]

Hi Michele,

If you think it will help please do send the message on. I am new to this site, is it at all possible for you to send me the contact details of the firm providing the Doppler equipment? I could talk to the radiologist about it on Thursday.

I will find out as much as I can from the radiologist. Let me know if you have any thoughts on what I should ask....I was thinking:

1. If he agrees to give us an MRV I can ask if he will do this for others & what he needs I.e is a GP referal enough.

2. If not, in his experience what is the best route for us to get a UK trial, or approval for the tests and surgery in the UK (it seems crazy that each country has to execute their own clinical trial - what a waste of time and money).

3. Do they carryout Doppler ultrasounds, if not would they be willing to - then I can mention the firm you are in contact with.

4. What is the best way of getting a list of university hospitals with radiology or vascular departments?

I'm pinning alot of hopes on this appointment, as is my husband and our families. I pray that it is the start of a better life.

[Dovechick]

Hi SkallyWags, Sorry I cannot give you any more details as I have been asked not to at the moment. I can say that the parent company worked with Prof. Zamboni on the algorithm needed for their machines. All I can do at the moment is keep the pressure up.
Until they have a number of operators trained there will not be anything to offer patients. In the future a properly carried out doppler test will be sufficient to find the problem, but before intervention a MRV will still be necessary.
Re vascular research centres in this country, if you do a google search you will come up with a few answers. Imperial college London seems a prominent one to which I have sent links to Prof. Zamboni's papers.
LR1234 (aka Leanne UK resident) gave me this information a few weeks ago:

I managed to get the MRV and CT scan (you don't need both one or other) in the UK but I found it hard to get anyone to do this for me. If you have insurance and want to get them done here privately you can contact Alun Davies (Lister Hopsital Chelsea) or Mr Tolias at the same hospital. Now both of these did agree to see me. Mr Tolias did the scans and Alun Davies looked over them but unfortunately neither were that much help in taking things a step further. Neither of them were willing to do any tests that were invasive to prove the theory.

[SkallyWags]

Thanks Michele - that's great. At least if Thursday is a disappointment we know where to go and get the MRV done. We are taking it one step at a time, once we have the scan then we can worry about treatment.

I am a little confused. What is it that we should all be doing together to bring the liberation treatment to the UK?

Xx

[Dovechick]

Skally wags At the beginning of this thread BodgIT wrote

My plan is to create something of a pressure group. I want to start organising a coordinated approach to bringing CCSVI to the UK. I have many ideas about what this will involved and feel certain that this is the best way forward rather than many people firing off in all directions.
.....

Having read a million posts on this forum, I'm aware of how inspiring, courageous and determined you all are, lets focus some of that toward our common goal.

Gary

[Dovechick]

I have been in contact with the person who works for a doppler firm and he has updated me regarding the present situation for testing in the UK. Here is what he wrote:

At the moment we have a sonographer (private)
pencilled-in to receive training in the CCSVI technique in March 2010
with the aim to offer a service following the training.

Meanwhile I've spoken with various parties within the
imaging/interventional sector and the interest has been predictably
dismissive of not only the diagnostic (Doppler CCSVI Ultrasound) but
also the therapeutic (Liberation) technique.

The message from my Italian colleagues is that these techniques need to
be promoted by the medical profession and not the company; this is
clearly misguided and we will therefore continue with our plan to offer
the service privately.