HOW MANY FROM THE UK HAVE HAD THIS PROCEDURE

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

HOW MANY FROM THE UK HAVE HAD THIS PROCEDURE

Postby awol1920 » Mon Mar 29, 2010 6:08 pm



I have been reading this forum for a couple of months now and also CCSVI on facebook and to be perfecty honest i am fed up with reading the negitive responces from neuros in this country my father has RRMS and has done for the past 29 year, I went with him to see his neuro last monday and the bloke didnt even have the decency to show up. I am sick of hearing that more reserch needs to be done b4 the NHS can offer this treatment I dunno how many ppl in this country have had the procedure but if they could all get to gether is this not enough proof why do we have to wait for crying out loud it is clear that this procedure helps those with MS we all need to do something that is going to get this notice and we need to keep it in the press. WE NEED TO GET THIS NOTICED AND NOW AS FAR AS I AM CONCERNED IF ANTON COLLINS CAN DO IT AS a FAVOUR FOR SOMEONE IN BELFAST ON THE NHS THEN THERE HAS BEEN MORE RESERCH INTO THIS THEN THEY R LETING ON, THE NHS WOUD NOT LEAVE THEMSELVES OPEN TO SUING IF ANYTHING HAD OF GONE WRONG WHICH THANKFULY IT DIDNT. PLEASE LETS UNITE AND BRING THIS TO THE FOREFRONT WE HAVE A ELECTION COMING UP SOON LETS GET THIS NOTICED AND HOPEFULLY THESE STUPID POLITICIANS WILL JUMP ON THE BAND WAGON. PLEASE NE IDEAS WOULD BE GREATFUL. FATHERS FOR JUSTICE WHEN FIRST STARTED OUT ONLY HAD 4 MEMBERS LOOK WHAT THEY GOT NOW N EVERYONE IN BRITAIN KNOWS ABOUT THEM
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Postby L » Mon Mar 29, 2010 8:07 pm

gibbldygook (from London, I think) has, Badger has (from Scotland) and LR1234 (also from London I think). I may join them next year if I overcome my fear of cardiac catheters..

I have no idea what the total number is mind you.

I think that Mutley comes from the UK too, but I'm not completely sure..

The Buffalo results are due out later this month. They are sure to raise awareness and to add weight to any persuasion to investigate CCSVI further.
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very well said

Postby livabird » Mon Mar 29, 2010 10:50 pm

you put this absolutely on the mark.
My wife(this account) has been suffering along time with PPMS.
She has her appointment on the 21st of April, will keep you up to date on how it goes
So Livabird can be counted (Northampton)
There has been concerns over people leaving the UK to have it done and was mentioned that we need to stay and fight this, but the more people that have this done with hopefully positive outcomes will help highlight to the powers in this country that it is worth while.
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Postby mags4short » Tue Mar 30, 2010 12:06 am

I am going in May. So we can then add Lancashire to the list :)
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Postby LR1234 » Tue Mar 30, 2010 1:58 am

Yes I am from London, Maybe we should get a little UK thread going. There are many UKers who have had the treatment but are not posting.

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Hello!!!!

Postby Badger » Tue Mar 30, 2010 2:05 am

I am one fro the UK but I was also with another man from Glasgow. He has PPMS and I have RRMS.

So count that as 2. :D
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Postby sweetpea » Tue Mar 30, 2010 4:44 am

Awol,

There is a pressure group and they handed a petition into Downing Street last week

[url]http://www.facebook.com/notes/ms-ccsvi-uk/ms-ccsvi-uk-delivers-ccsvi-campaign-to-downing-street/10150158830455713

And a private clinic in Glasgow is doing Doppler scanning and possible referal on to have angioplasty:

[/url]http://www.essentialhealthclinic.com/website/

I'm going on the 12th July
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Postby whyRwehere » Tue Mar 30, 2010 5:04 am

There was also wonky1, who had a sky news bit done about himself.
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Postby Inge67 » Tue Mar 30, 2010 6:01 am

I was wondering, since we have all UK members here...

What is your opinion on the Essential Health Clinic? I there a widespread opinion on the standard of this clinic? Is there a UK forum where we can ask?

I am asking because a lot of Dutch want to go there and are wondering about the quality of scans offered.

Sorry to hijack this thread.

Inge
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UK CCSVI

Postby LSITC » Tue Mar 30, 2010 6:52 am

Hi
I am from London and trying to get something moving.

I signed the Downing St petition but with an election coming up nothing is going to happen.

Regards Essentials CLinic I am on their mailing list but am rather concerned about Dr Gillhooly's credentials as I do not think this is his specialist field. I googled him and got surprising results.



:twisted:
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Postby sweetpea » Tue Mar 30, 2010 7:13 am

Hi LSITC,

I must admit Dr Gilhooley seems to be in to making profits as a retired GP. However it isn't him doing the scans. He owns the clinic and has recruited a radiologist to do the work. This radiologist has been trained to look for CCSVI.

Being on their mailing list isn't enough. You have to go on the website and book and pay (£450) for a scan. I found this out yesterday.

What results did you get when googling him?
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Essentials Clinics

Postby LSITC » Tue Mar 30, 2010 8:16 am

Hi Sweetpea

Assuming that I have the correct Tom Gillhooley, his field of expertise was treating drug addicts and also nutriton. He became involved in LDN somehow (perhaps through a contact within a pharma company?) and has moved into treating MS. Not a neuro and not a vascular man as far as I can see.

Thanks for the heads up about the scan -are you paid and booked?
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Postby livabird » Tue Mar 30, 2010 8:22 am

THE DOWNING STREET PETITION WAS REJECTED DUE TO LACK OF INFO I BELIEVE. IT HAD A HIGH NUMBER OF SIGNATURES BUT IT FIGURES THEY WOULD REJECT IT. TOO BAD A PARTY DIDN'T JUMP ON THEY WOULD HAVE GOT LOTS OF VOTES. ESSENTIAL HEALTH SEEMS GOOD BUT THEY DON'T DO TREATMENT JUST TESTING. IF THEY DID TREATMENT I WOULD IMAGINE IT WOULD BE EXPENSIVE I AM GOING TO POLAND APRIL 20. I FEEL MORE CONFIDENT GOING SOMEWHERE THAT HAS BEEN DOING IT FOR A WHILE. HOPEFULLY THIS COUNTRY GETS FULLY INTO IT BUT I WON'T HOLD MY BREATH.

LIVA
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Postby sweetpea » Tue Mar 30, 2010 9:15 am

Livabird,

I missed joining the waiting list until it was too late and the list was sooo long it went into 2011 in Poland.

It appears that if you have CCSVI, Essential Health will be able to refer you onto another clinic for angioplasty. They have an agreement with a clinic close by.

Admittedly the scans are £450 which I have paid out but at least I won't have to travel all the way to Poland. Someone said that with the travel and accomodation costs it came to nearly £9,000.

I know to have angioplasty won't be cheap but it's going to cost whatever way I go
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Postby sweetpea » Tue Mar 30, 2010 9:18 am

Hi LSITC,

That's interesting that the good Dr's first interest was with drug addicts because LDN was first used on drug addicts. Now he prescribes it to MS patients. He's obviously a good business man
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