First liberation procedure in UK

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

Postby whyRwehere » Fri Nov 06, 2009 4:49 am

I think someone mentioned that Dake thought the CATscan was the least operator dependant test. To show reflux, as opposed to a narrowing, you would need a doppler. I don't think it is worth you going through a doppler, unless the "artist"/doctor is aware of the theory and has had training in the doppler procedure used by Zamboni's team. I am sure they will tell you that everything seems normal. Seeing as that might make your GP think you a hypochondriac, and not give you any more tests, it would be best to find someone in the know or do the CATscan, which has a radiation risk, though.
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Postby acol » Thu Nov 12, 2009 4:17 am

whyRwehere

Thank you for your response.

It all seems rather quiet all of a sudden. I would be grateful if anyone else could add to this debate or point me in the direction of finding more information on the Catscan. To my untrained eye I would have thought that any risk of radiation would pale into insignificance compared with the general problems suffered by a person with MS. Am I wrong on this?
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Postby whyRwehere » Thu Nov 12, 2009 4:51 am

Well, it is hard to know. I was just looking at an article where doctors disagreed whether it was better or worse for the patient to have a Catscan for lung cancer. But I really don't know a lot about it.
It looks like everyone is going to Poland, where Dr Simka is seeing people. have you considered that? (people from the UK, Ireland, Australia...).
My husband and I are waiting for something to be done in France, as we have insurance here and no money for travel.
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Postby wonky1 » Thu Nov 12, 2009 5:48 am

Hi Nigel
I don't get email notifications about thread updates any more so I have been all over the site participating in different threads.
Anyway I am off to Poland too. Once I have irrefutable evidence of a stenosis by the MRV scans then I will start again trying to get people in the U.K. interested. Also Zamboni is publishing another paper next month, I'm sure that will make it harder for doctors to ignore.
I dont think the MRV will be very invasive. They inject a contrast dye into you then take a look with a magnetic resonance machine. No radiation involved.
A cat scan uses x-rays so sounds more risky. They have found that rats given massive doses of N-ACETYLCYSTEINE (NAC) are protected from DNA damage from the X-rays.
Of course I'm not a doctor or a rat but if I were having an x-ray I would have some NAC, if only for the protection in a placebo like way.

(Caveat - I'm not a doctor or even smart and I have M.S. fatigue, so I wouldn't listen to my ramblings)
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Postby ErikaSlovakia » Thu Nov 12, 2009 7:09 am

They did not inject any contrast dye to me before neither during MRV in Zabrze/Poland.
But I do not know if it will be always like that.
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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby GiCi » Thu Nov 12, 2009 7:56 am

I wish to reassure everybody regarding the risks of having a catscan. It is true that X-rays are involved, but the dose is minimal (most the the work is done by the computer) and the risk negligible. No need therefore to take fancy drugs for prophilaxis.
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Postby acol » Thu Nov 12, 2009 10:31 am

All of a sudden this thread bursts into life! Thanks to all these useful contributions.

My doctor said that she would refer me to a vascular surgeon. Keeping fingers crossed that matters will progress in a satisfactory manner and that whatever methodology is used will detect any blockage.

My fall back position would be to contact Dr Simka in Poland.
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Postby wonky1 » Thu Nov 12, 2009 1:33 pm

Well done Acol, sounds like progress indeed!
You must be very persuasive, or have a very good doctor or both.
Really interested to see what the vascular surgeon has to say about it all.
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Postby acol » Sat Nov 14, 2009 12:04 pm

wonky1

Thanks. I will post more if my situation progresses in a positive manner.

Like yourself I have been spending the last few days trying to get up to speed with the history of this site. I have been reading the main CCSVI thread - a massive 57 pages long! I am nearly half way through and have been bowled over by the detailed contributions of so many members. Retrospectively, I wish that I had done this reading before asking so many mundane questions. All those people who have patiently answered my queries would have been quite entitled to point me in the direction of that thread rather than repeat what has been previously written. I am very grateful for their kindness and tolerance.

I will now get back to page 28 and learn some more.
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Postby acol » Thu Jan 14, 2010 11:13 am

Progress Report.

To recap, in November last year my doctor had referred me to a vascular surgeon. I was presented with a short list of 3 consultants. A Google search soon narrowed the choice down to 1 and I booked an appointment on the Internet. I saw the consultant in early December. Prior to the appointment I sent him 2 reports – the Professor Zamboni report dated December 08 and Dr Simka’s report on how to do the Doppler test on patients with MS.

To my surprise I found the consultant reasonably receptive to CCSVI. He had some reservations but thought that it was an interesting concept. These reservations seemed to centre on 2 issues. Firstly, he felt that when more studies were done the blockages would not be confined to just patients with MS. He also stated (the obvious point) that veins were different to arteries and if the odd vein was blocked then blood would find its way back to the heart somehow. This observation may not be recorded with absolute accuracy but I think that this was the gist of the point that he was making.

From my perspective the main point was that he was interested enough to take the matter further. He said that he would refer me to a very experienced radiologist for an extra cranial venus duplex test.

This morning I had that test. The radiologist had read Professor Zamboni’s report and I also brought a copy of Dr Simka’s notes. She appeared to do the test with some diligence and I was tested in the upright (sitting) and supine positions. These tests must have taken about 30 minutes. She said that the tests did not show any obvious stenosis but she said that she would need to study the results in more detail and especially the comparisons between the 2 positions. She also said that in her view there would be a need for an MRI/MRV test. However, she was not sure where this would be done – possibly at a London Teaching Hospital.

In the meantime I will have to wait for another appointment with the vascular sugeon and for his view on the dopplers. At this stage I have no idea if this will lead to an MRV or not. It may be the end of the road or they may be prepared to take it further. From a personal perspective I think that I will end up in Poland but at least I have tried my level best to get the British NHS interested in CCSVI. Fortunately, I have already booked an appointment with Dr Simka for March this year.
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Postby colmmc » Thu Jan 14, 2010 11:29 am

Hi acol

I've just found this thread so forgive me if Iam going over old ground.
I want to go to my GP and get a referral to a vascular surgeon.
But don't know whats the best way to approach it.any advise gratefully
received .
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Postby acol » Thu Jan 14, 2010 11:58 am

Hi colmmc

I think that you will need to read all the posts in this thread in order to get a better idea of the problems involved. From a personal perspective I am amazed that I have got this far! I fully expected getting blocked at much earlier stages and if I'm honest I still don't hold out much hope of getting treatment in the UK. With the best will in the world the expertise is lacking and NHS protocols will tend to block new inovations or procedures.

Having said this I would most definitely encourage you to try your level best to get this treatment on the NHS. The more people who badger their doctors, the more people who write letters to their Primary Care Trusts the better. We need to be heard! We need to educate health professionals.

Personally, I don't think you have a cat in hell's chance of going down the neurologist route. I spoke to my neurologist and she was not interested.

However, if you see your doctor and can provide her with some evidence of a vascular problem then you may be more successful.

Good luck.
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Postby colmmc » Thu Jan 14, 2010 12:08 pm

Thanks,
My appointment in Poland is not until November so ,I think I may as well have a summer giving the NHS hell .I really think someone needs to, so it might as well be me. Anyone else up for it?

http://petitions.number10.gov.uk/CCSVINOW/

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Postby acol » Thu Jan 14, 2010 12:23 pm

Hi colm

Wow That was quick! Seriously, well done for starting this petition. I shall certainly put my name on the list and will circulate it to my friends to do the same.
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Postby acol » Thu Jan 14, 2010 12:29 pm

I suppose it won't be long before someone points out the fact that Zamboni has not actually said that it is not an auto-immune disease. In fact I think that he accepted the fact that it was auto-immune (although that has never been conclusively proven). He has cautiously stated a believe that there may be a connection with venous deficiency and has provided some evidence to back his theory. He has always stressed the need for much more research.
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