First liberation procedure in UK

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

UK procedure

Postby GiCi » Thu Oct 15, 2009 7:52 am

Hi Gibbledygook,
The procedure was NHS and I do not see how UK patients should not be able to contact the doctors who treated me.
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Postby gibbledygook » Thu Oct 15, 2009 8:17 am

Oh boy. I sure hope that these doctors don't mind being contacted by other MSers! Thank you very much GiCi.
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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Postby whyRwehere » Thu Oct 15, 2009 10:54 am

Congratulations!
Now, if only France would move. I thought I had a lead, but it has come to a dead end...then I thought I would beg Dr Zamboni to see my husband, but that didn't happen either...Maybe he could go to Belfast? He just can not walk any more, it's too depressing.
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belfast

Postby GiCi » Fri Oct 16, 2009 4:37 am

Hi WhyRwehere,
My suggestion would be to obtain a doppler or MRI that document an obstruction of the venous drainage of blood from the brain and take it to a private consultation with Dr Baker (it will not be very expensive). Or I suppose you could do the same with Zamboni. Unfortunately if your husband then needs the liberation procedure it could not be done on the NHS.
Let me know whether I can be of help.
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Postby whyRwehere » Fri Oct 16, 2009 4:52 am

Well, you were a help...I was so frustrated I emailed the French doctor again (with your news) and she says, the problem is getting the SWI MRI, that no one will listen in France, but she is willing to see my husband for possible treatment, anyhow. I am making an appointment after I answer you. I have to say, I was in tears this morning from sheer frustration...I am happy for everyone who is treated, but to get no where here is heartbreaking...I'm sure Erika understands. But there is hope, now, so when it is all done, I will spill the beans myself. Thanks GiCi.
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Postby ErikaSlovakia » Fri Oct 16, 2009 6:19 am

Oh yes, I understand!
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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Now to keep the ball rolling

Postby wonky1 » Fri Oct 16, 2009 9:37 am

Well done GiCi!
That's brilliant news, glad it all went well.
I am feeling very impatient and want the procedure myself.
How do you think I should proceed?
Do you think other, more local teams could be influenced by this and take the plunge themselves?
Or would it be possible for someone from out of town but still U.K. to get referred to Mr Baker?
Grateful for any advice you can offer and many thanks.
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Postby CureIous » Fri Oct 16, 2009 10:12 am

This is most excellent. Congratulations from across the pond!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Brainteaser » Fri Oct 16, 2009 6:26 pm

Fantastic GiCi!!!!!!!!! :D

There are a couple of really good points here........

1. You felt immediate relief after the operation.

2. The procedure was conducted in a country with a public health system. That's what I've been told is the reason I'll struggle to get the procedure done (yet) in Australia. The medical industry moves like lemmings with no-one prepared to step out of line. That's why I think my VS got cold feet. Maybe your doctors could enlighten doctors in other countries with a public health system such as France, Canada, NZ, Oz etc. that they have nothing to fear.

Phil
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NHS

Postby GiCi » Sat Oct 17, 2009 4:25 am

Brainteaser,
I think you made a very valid point: private medicine offers a very limited space to innovations and is practiced under the terror of possible litigation. On the other hand doctors in the NHS are also resistant to changes because of the existence of "clinical governance", which means that the chief executive of the hospital is responsible for the clinical outcomes and is therefore very prudent in authorizing new treatments.
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Postby acol » Sat Oct 17, 2009 4:48 am

Hi GiCi

I am really pleased that the procedure went so well and thank you very much for keeping us all updated. I share Wonky 1's interest and enthusiasm for trying to find a way of getting the procedure done for ourselves. I live in Bucks, England and I presume that you are resident in Belfast? I would be very grateful if you could give us as much information as possible on how you managed to get the procedure carried out on the NHS.

In England there are huge political difficulties with any new medical procedures. Each Primary Care Trust (PCT) has its own agenda and own priorities and the expression 'postcard lottery' is a very real concept. Presumably, you discussed this first with your neurologist and he/she referred you on from there?

If push came to shove I would be prepared to privately fund this procedure but I would be less anxious if it was carried out within the UK ie Belfast. I am currently a patient under Professor Thompson at the National Hospital in London.

I would be very happy to contact you either privately or on board, whichever is your preference. Once again, thank you very much for your openess and I hope you gain continuing improvement.
Nigel
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Postby GiCi » Sat Oct 17, 2009 9:56 am

Hi Nigel,
Unfortunately my neurologist did not help, in spite of the fact that I sent him all Zamboni's papers.
So I persuaded a vascular surgeon (Robin Baker), who persuaded a radiologist (Anton Collins). I suppose the fact that we are colleagues in the same hospital may have helped.
If I were you I would contact Mr Baker at the Royal Victoria Hospital.
Best wishes,
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Postby acol » Sat Oct 17, 2009 1:47 pm

Hi GiCi

Why am I not surprised! :o

Out of courtesy I would obviously want to discuss this with my neurologist. Professor Thompson is thought to be the leading UK neurologist and up until recently he was the adviser to the MS Society in Great Britain. It will be interesting to get his view on CCSVI - although I won't be holding my breath.

In due course I might well pursue the idea of trying to contact Robin Baker and Anton Collins. I presume that you discussed this matter with them prior to having the scan to determine whether or not the vein was blocked? I think that you were very fortunate to get them to carry out the procedure in spite of the negativity of your neurologist. In most peoples cases the lack of support from one's neurologist would be the kiss of death!

I would imagine that many readers in the UK will be hanging onto any words that you might say and in particular any advice that you can give as to the procedure that you have experienced. It goes without saying that we all hope that you continue to show good progress. Further situation reports will be much appreciated.

Thank you for your help thus far.

Kind regards,
Nigel
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Postby Brainteaser » Sat Oct 17, 2009 5:35 pm

Yes GiCi, I don't think others (especially those in the US) might thoroughly appreciate what a HUGE step forward you have made in Belfast. This is monumental for the UK and it will be interesting to see how fast it spreads elsewhere in the UK and to other countries which have the constraints of a public health system.

'Sicko' by Mike Moore pointed out the advantages of a public health system - it's good for your 'off the shelf' type ailments and procedures, but not so good for anything outside the square, so it seems.

IMO, I think the best prospects for CCSVI intervention in the short-term might be:

1 USA
2 Eastern and Southern Europe
3 Asia - there are some world class hospital facilities in places like Singapore and Bangkok. As with most other things, once the Asians get hold of CCSVI they'll probably do it faster, cheaper and better than anyone else!!

Phil
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Postby mrhodes40 » Sat Oct 17, 2009 6:14 pm

faster, cheaper and better than anyone else!!

it is so expensive at Stanford that co pays could probably cover the cost elsewhere!!! What my insurance paid for my surgery might pay for 15 people in Poland....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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