UK people having CCSVI tests & procedures done abroad

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

UK people having CCSVI tests & procedures done abroad

Postby Mutley » Tue Nov 17, 2009 9:27 am

Perhaps like many of you, I see little point (for now) in trying to convince my GP and Neurologist to organise any kind of CCSVI tests for me here in the UK because they probably won’t be very sympathetic to the proposed links between MS and CCSVI. Even if they were, it would take forever to organise and I doubt that many professionals over here would conduct the tests in accordance with the specific protocols recommended by Dr Zamboni that are required to show conclusive results. Therefore, getting the tests done in Poland by Dr Simka (my nearest option) seems to be a no-brainer.

So I am in the process of organising the trip to Poland for a Doppler and MRV and I am very excited.

If this confirms that I have CCSVI then do I have a choice as to whether I
a) Present this hard evidence to my GP here in the UK (since they cannot dispute this if I have proof right?) and pursue treatment options here in the UK via the NHS (zero cost), or
b) I ask Dr Simka to do a liberation procedure for me in Poland (and I fund this personally)?

The plus side of getting my veins taken care of here in the UK is that it probably won’t be as costly and I’ll be in familiar surroundings. But the procedures/stents/diligence etc may not be EXACTLY what I would have received from Dr Simka and his colleagues, and therefore the benefits may not be all that they could be. But on the flip side I am sure that Dr Simka and his team will have far more experience in carrying out this specific procedure and I won’t have to jump through so many hoops to get the procedure done. So I can’t quite weigh up if I really have that much to lose by having any corrective procedures done here in the UK? Have any of you had the tests done in Poland, and then had any corrective treatment done via the NHS in the UK? And if so, are you happy that you made the right choice?

I am also a little worried about how any treatment that I organise in Poland may affect any follow up care that I may need when I get home to the UK. Is anyone in the medical profession here in the UK likely to refuse me for any consultations/care/treatment etc because I chose to have an unapproved treatment done outside of the UK? If not, could they make it awkward for me somehow?

I understand that there is a possibility of follow up tests/procedures/medication to keep my veins in tip-top condition, but would it be best to have all of this taken care of in Poland regularly, or could I trust the professionals in the UK to at least do this much?

I’d be very grateful of any input. My gut feeling is to have the tests and any subsequent procedures done in Poland by Dr Simka, and then worry about any repercussions later. But any info or experiences anyone else may have would be very welcome.

Many thanks!
Last edited by Mutley on Tue Nov 17, 2009 2:51 pm, edited 1 time in total.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Brainteaser » Tue Nov 17, 2009 2:27 pm

Mutley,

I'm only a Colonial but I've been grappling with the same issues as you over several months - go to the Aussie Action thread.

Phil
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Postby wonky1 » Tue Nov 17, 2009 4:21 pm

Hi Mutley

A few of us have that same gut feeling.
I originally though that surely I would be able to get the medical profession in the UK interested.
However after hitting several brick walls, I decided it would be better to see Dr Simka for both scanning and treatment.
Then after I return, hopefully with renewed vigour and evidence of stenosis and repair, then I may have to set up camp outside my local hospital until they take notice. :lol:
I don't know yet if it would be necessary but my GP is happy to do any INR blood checks post op. He wasn't at all phased by that. I didn't perceive any petulance at all.
Even if you have evidence of stenosis, I thought it would be a real struggle to get a vascular surgeon interested. I thought they may say that evidence of stenosis cannot be used as a causative link to your MS.
Thankfully, in a world full of doctors there are a few with open minds.

Wonky
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Re: UK people having CCSVI tests & procedures done abroa

Postby ErikaSlovakia » Wed Nov 18, 2009 2:27 am

Mutley wrote:I am sure that Dr Simka and his team will have far more experience in carrying out this specific procedure and I won’t have to jump through so many hoops to get the procedure done.


Dr. Simka did not even know I exist and I took the decision to do it in Poland.
My opinion is, it will take years until somebody has so much knowladge and experience in Slovakia as Dr. Simka has now.
No way I wait couple of years :!: :!: :!:
It is not "only" the procedure, it is much, much more knowladge.
I do not expect any complications. My strategy was to visit as many doctors as possible before the procedure. All of them were nice to me. Now, I am welcome everywhere. They already know what is going on.
I am even in touch with Dr. Shelling from Austria, prof. Corcos from Italy and couple of doctors in Slovakia. I am even in close contact with one young neurologist in my town. She can also help me a lot. It was her, who asked me for more information. The other doctors in my town are just 8O
But so far, nobody was completely negative. Of course, some of them have many questions.
Lucky me, most of the doctors speak English.
I do not know how is it in UK. I get prescription from a hospital in London for my LDN - it was quite simple.
Good luck!
Erika
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 gibbledygook » Wed Nov 18, 2009 5:09 am

Good luck indeed. After I returned from America my NHS GP refused to monitor my INR and insisted that Prof Dake do everything, including finding a place for a follow-up scan which, needless to say, was not paid for by the NHS.
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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treatment abroad

Postby GiCi » Wed Nov 18, 2009 11:09 am

To be absolutely honest in occasions like this I feel deeply ashamed of belonging to the medical profession.
I can understand the resistance to change, I can understand that the link of cause and effect between CCSVI and MS has not been proven so far, I can understand the strength of the pharmaceutical lobby, but I cannot understand how a doctor can refuse to give adequate assistance to his patients who are on coumadin as a consequence of a procedure they do not approve of. I may be wrong but I think that such behaviour could well amount to mal-practice. Doctors' institutional duty is to look after the health of their patients, not to emit moral judgements.
It is like refusing to treat a broken bone because skiing is potentially dangerous and the patient should have known better. Doctors should treat conditions and not tell people how to live. Free choice should be respected as human rights.
I apologise on behalf of those doctors whose behaviour is so evidently un-ethical.
GiCi
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Postby Mutley » Wed Nov 18, 2009 12:06 pm

Nicely put Gici and great analogy. I imagine that there is quite a wide gap here too. Some GP’s may well be very supportive and totally open to any new procedures that their patients may wish to explore (hopefully mine will fit into this category) whilst others will be the complete opposite. Much as I’d love to test the water with my GP I feel very apprehensive about how a conversation like that could quickly spiral into disarray. So I'll stay quiet for now.

I wonder Gibbledygook what would happen if you challenged your GP to write to you and state the grounds on which they refuse to provide care to you? It would be a brave GP who put pen to paper...

Thanks Wonky, be sure to leave some space so that I and everyone else can camp outside with you :D .

Nice one Phil, and best of luck with everything your side too. Keep us posted.

And thanks to you too Erika, you are an inspiration to us all!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby gibbledygook » Wed Nov 18, 2009 1:00 pm

I think you're right, Mutley. You should be prepared to challenge that response. I didn't. I have come to expect very little of the NHS and public services in general!
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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