First liberation procedure in UK

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

Postby acol » Sun Oct 18, 2009 8:52 am

Brainteaser
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.
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The UK system can be good for new innovations but it is a bit of a lottery. It depends on the budget for a given Primary Care Trust. The issue can be further complicated if your neurologist is from a different health authority than your doctor - as is the case with me!

The credit crunch will affect the funding of most Primary Care Trusts in the UK. However, if you can convince your neurologist of the efficacy of the procedure then you could be lucky. Some neurologists are more receptive to new ideas and some will also treat their patients like human beings and will accept that intelligence is not the sole prerogative of members of the medical profession.

I agree that GiCi has made a landmark case by getting the procedure done in the UK - and paid for by the NHS.

Mr Rhodes
Interesting to read your observations on the expense of Stanford - sobering thoughts. East Europe could well provide the practical answer for UK sufferers.
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Postby Brainteaser » Sun Oct 18, 2009 2:54 pm

GiCi,

In Belfast you have put a pretty big 'foot in the door' for CCSVI in the UK - that's terrific! :) I also think it's great that you are quickly referring others from the UK there in order to start to prise open that door! :)

I was hoping to do something similar here.

What might have some influence on the 'nervous nellies' down here would be some form of report, official documentation or media release from Belfast which I could flick on to some local people to say "Hey look! - there's nothing to be afraid of - see, the NHS and/or whoever in the UK have OK'd it!"

Would you have something we could use, either putting it up here or PMing.

Thanks,
Phil
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Postby GiCi » Mon Oct 19, 2009 12:03 pm

Brainteaser,
Sorry not at the moment. Rest assured that I will post it when and if available.
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GiCi,

Postby jay123 » Mon Oct 19, 2009 3:15 pm

I'm curious are you taking anything else for your MS now? It just seems to me that this procedure will help stop the progression, but do you think anything else is needed to halt the disease once you have it?
I realize this won't cure the existing lesions, we wait have to wait for the stem cells...
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Postby acol » Tue Oct 20, 2009 1:43 am

Hi GiCi
Can I ask a few simple questions of you or perhaps anyone else who could help? Firstly, my understanding is that the liberation procedure involves the insertion of a stent in or near the jugular vein (neck). However, the CCSVI - Just the facts ma'am' thread para 8 talks about Dr Zamboni going into a vein through a small incision in the groin. Could someone please clarify this for me?

I would be grateful if GiCi could give me an idea of the time gap between the venography and the actual operation? Do you think it would be possible to have these 2 procedures quite close to each other or does there need to be a time gap of several days or possibly a week?

Yesterday, I did have quite a lengthy telephone discussion with my neurologist. To say that she was luke warm to this discovery would probably be an exageration. CCSVI didn't ring any bells until I gave it the full title. It simply was not on her radar and all her hopes for solutions appeared to rest on current ongoing drug trials and stem cell studies. I will obviously get no support from my neurologist or anyone else from the National Hospital in Queens Square. The official line is still along the lines that MS is an auto-imune disease. However, in a subsequent telephone call she did advise me to contact Dr Zamboni.

At this stage my preference is to try to speak to Dr Collins and Dr Baker. Realistically, I think that this will have to be privately funded because I cannot see me getting help from the NHS. I clearly need to gather as much information as I can get.
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venogram and liberation procedure

Postby GiCi » Tue Oct 20, 2009 8:16 am

I had the venogram and dilatation of both jugular veins performed during the same session of about one and a half hour and I was home 4 hours later.
Both procedures are performed through the same puncture of the femoral vein in the groin under local anaesthetic. Different catheters are used for the venogram and the balloon dilatation, introduced in turn through the same puncture. It was a painless experience.
A word of warning: the vascular surgeon will need evidence of defective venous drainage from the brain (doppler or MRI) before prescribing a venogram.
I hope this will help to clarify the issue.
I am not on any drugs following the procedure (and I have never taken any drugs before it): I believe that the body heals itself once the inflammatory trigger is removed. My gut feeling (not science) puts me totally against the usage of stem cell treatment: we really face the abyss of the unknown.
This does not constitute an advice: just a personal unscientific attitude.
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Postby acol » Tue Oct 20, 2009 9:23 am

Hi GiCi

Thank you - very helpful. I had wrongly assumed that the venogram would have provided the evidence of the defective venous drainage. I am aware that the doppler procedure is very much dependent upon the skills of the operator - which leans me towards going for the MRI scan. Would I need to get this scan done before I approached Dr Collins/Baker? Would I need to get the scan interpreted or would it be sufficient to merely send it to Collins/Baker.

It was really these issues which led me to ask you if there was a time separation between the procedures. I am sorry to be asking stupid questions which I probably should have researched more thoroughly before raising it on this board. As I may have indicated before I think that all this work will have to be done privately. I may well discuss it with my Doctor but I am not optimistic of getting NHS help. The sequence of procedures are therefore important from the financial perspective. The more people that are involved the greater the likelihood that costs will increase!

As an aside I am certainly not interested (at this stage) in either stem cell treatment or drugs. I just mentioned the response of my neurologist. I have never had any drugs to treat my MS other than painkillers. I am currently taking Tramacet and Amytripline for very unpleasant nerve pain.
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Postby acol » Tue Oct 20, 2009 9:40 am

Further to the above. I think my confusion occured as a result of reading para 5 of 'Just the facts, ma'am' - you need to be tested by a doctor who specialises in radiology .....you need a venography....this is where the dye is injected into your veins to see the blood flow ... etc etc

I had assumed that Doctor Collins would do this test thus providing the evidence to allow the vascular surgeon (Dr Baker) to operate? Have I got this sequence wrong?
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Postby cheerleader » Tue Oct 20, 2009 9:58 am

I wrote Just the Facts, and just updated the diagnostic protocol section...I will keep updating as we learn more. Diagnosing CCSVI is now dependent on where you live, and what is available. There will someday be a standard protocol-

According to GiCi, UK protocol needs the MRI/MRV or doppler to prescribe the venogram. That is the first step. MRI/MRV/doppler- THEN venogram-THEN ballooning. (Stanford protocol needed MRV only for prescribed venogram, since the dopplers were inconclusive. Doppler technicians need to be trained in Zamboni's protocol. So far in the states, only Jacobs has the training. Not sure about UK, GiCi? )
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby acol » Tue Oct 20, 2009 10:40 am

Hi Cheerleader
Thank you for that helpful explanation. I certainly wasn't in any way criticising the wording of 'Just the facts..' which I found most helpful and informative. As a newbie I am immensly greatful for all the hard work which is put in by so many people and especially your good self.

GiCi
Would I be correct in assuming that the protocol would require a degree of independence from the person who carried out the MRI/MRV or doppler or could this be done by the radiologist (Dr Collins) as a necessary pre-requisite to the veneology?

As an afterthought could you also briefly discuss whether or not a stent was used? From my limited understanding I assume that a stent would be a more permanent solution to prevent the vein re-blocking?
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venogram, balloon, stents

Postby GiCi » Tue Oct 20, 2009 3:09 pm

I shall try to summarize things in the hope that I will not be found to be either pedantic or patronizing.

1. A venogram involves the introduction of a catheter in the venous system, through a puncture of the femoral vein in the groin, and an injection of a contrast liquid which will show the flow of blood in the veins at the X-rays. Because the integrity of the body is breached (puncture) it is considered an "invasive procedure" involving some risk (bleeding at the groin, perforation of the veins). Such risks are more hypothetical than real, but they have to be considered nevertheless.

2. Doppler studies or MRI scans are "non-invasive" procedure and have no risks attached. In expert hands both should be able to show whether there are venous anomalies in the neck and in the azygos vein.

3. No serious professional person would undertake an invasive procedure without a clear indication that it is going to be useful. Such indication must derive by the result of non invasive, risk-free tests.

4. Cheerleader is right in saying that the expertise in doppler and/or MRI is not widespread regarding CCSVI.

5. For people who can afford it I would avise to contact Mr Baker, consultant vascular surgeon at the Royal Victoria Hospital in Belfast, who is now knowlegeable about CCSVI and has had some experience with my case (treated by Anton Collins). They should be able to organize a doppler or an MRI when necessary.
I do hope this can be of some help. I am at disposal should there be other questions.
I must add that I feel very well and I am extremely grateful to Robin and Anton for having the courage of treating me.

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Postby MrSuccess » Tue Oct 20, 2009 8:50 pm

good post GiCi .

You will need to refresh my memory , are you one of the liberation 100 patients of Dr. Zamboni ? If I recall , you went back to see Dr.Z for a second procedure ??? So your UK treatment is your third CCSVI intervention ? Is my score keeping accurate ?

I am wondering why you did not have Dr. Zamboni perform your latest CCSVI procedure ? Is your new CCSVI medical team working under Dr. Z'ds guidence ?

You do make a strong point by clearly saying that no qualified person will operate without some clear evidence such as xray ..MRI ...or .........

The information by Dr. Haake [sp] looks to be the gamebreaker to overcome this large hurdle. Better than Doppler tests.

Did your UK team attend Dr. Zamboni's presentation in Bologna ?

Good work old man ........ Press On



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Postby acol » Wed Oct 21, 2009 1:33 am

Excellent post GiCi - many thanks. There is no danger of anyone finding you pedantic or patronising, These are important issues and it is essential to obtain a clear understanding - which you provided.

As an aside my wife told me off for bothering you so soon after this procedure!

I will get back to you as soon as I have something to report,

Regards Nigel
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Postby homefront » Wed Oct 21, 2009 4:36 am

Dear Gici

we are new to this forum. My wife was diagnosed ppms about 2 years ago.
We are in the London area.

Thanks you for all the information and time you have put in here.

You mentioned that the procedure was carried out by the NHS but above you mention 'for those who can afford it'. Sorry if I've missed something but was the procedure carried out privately and can you give any indication of cost. Hope I'm not being too forward asking this.

We have a neurologist appointment in January but are trying to get some response through our ms nurse. Her response to date is

"I think the general consensus regarding CCSVI is that it looks hopeful but is still early days.As with any treatment for any disease extensive trials are necessary to determine if it is effective or has just helped certain people who may have improved anyway. It's definitely worth watching."

I have responded saying that if people can be proven via tests to have blocked veins, then shouldn't this be treated anyway whether it is proven to be linked to ms or not. We will see what response is.

Best Regards
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Postby Nees » Wed Oct 21, 2009 5:30 am

Hi GiCi and everyone

A huge thanks for all the info! I've just tried calling Robin Baker and got through to his secretary who said that the venogram and balloon dilation procedure for an MS patient was a one-off and will not be repeated :(

Disappointing, but I'm hopeful that other doors will open in the new year. Fingers crossed...

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