First liberation procedure in UK

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

Post by GiCi » Wed Oct 21, 2009 6:52 am

MrSuccess,
I had my first liberation procedure in Ferrara by Zamboni's team under the italian NHS nearly three years ago: balloon dilatation, no stents. Subsequently the hospital administration discovered that, as an Italian resident abroad, I had no right to NHS elective treatment and told Zamboni not to repeat the mistake.
Fortunately they did not decide to charge me.
Six months ago, during my usual visits to Ferrara, I had a doppler study by Zamboni (the hospital did not know of the test) which showed reccurrence of the CCSVI, and he could not treat me for the reasons above mentioned.
So I was able to be treated in Belfast.

I was treated for free but I do not know whether people from England could have the same service in Northern Ireland (although it is UK): this is why I said "if you can afford it".
I suggested to contact Baker with a referral of a suspected problem with the venous drainage of blood from the brain, leaving MS aside: he is a vascular surgeon and not a neurologist.

GiCi

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homefront
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Post by homefront » Wed Oct 21, 2009 8:00 am

Dear GiCi and all

if approaching with a referral for suspected venous drainage problem keeping ms out of it, it would seem the conundrum is how you woud have come about suspecting this without the link to all the activity within ms research and treatment.

Does anyone have any ideas please?

Regards
homefront

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Post by Rokkit » Wed Oct 21, 2009 8:06 am

In my opinion, you either have venous obstruction or you don't. How you came to suspect it shouldn't matter. Insurance of course varies on whether you need a referral to see a specialist and all that, mine didn't give me any trouble about seeing Dr Dake. Yet, anyway - haven't received the EOBs.

I don't think there's going to be one answer fits all on this, it's going to come down to each insurance company.

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Post by cheerleader » Wed Oct 21, 2009 8:07 am

homefront wrote:Dear GiCi and all

if approaching with a referral for suspected venous drainage problem keeping ms out of it, it would seem the conundrum is how you woud have come about suspecting this without the link to all the activity within ms research and treatment.

Does anyone have any ideas please?

Regards
homefront
As Lew has mentioned...the referral we used to get the MRV was for vascular headache and swelling/edema/painful neck. The only other links made with the jugulars has been transient global amnesia related to reflux and malformations in Crouzon's and Menierre's (but those diseases have other, more prominent, features.)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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acol
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Post by acol » Wed Oct 21, 2009 11:58 am

In view of Nees's comment the prospect of getting this treatment in Belfast doesn't look promising. This may explain why Dr Baker's secretary didn't call me back.

GiCi

I would be grateful if you could clarify whether or not stent's were used in your recent treatment. Do you know why the veins blocked after having the first treatment in Italy? Is it possible for this problem to re-occur?
Nigel

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GiCi
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stents

Post by GiCi » Wed Oct 21, 2009 3:11 pm

acol,
I will repeat maybe for the tenth time (see my previous posts) that I did not have any stent implanted.
At the present time it is futile to ask a vascular surgeon to treat MS: even if he believes Zamboni's theory, he has no evidence to rely upon. You need to be referred to him with a vascular problem, i.e. suspected defective venous drainage of blood from the brain with the symptoms cleverly highlighted by cheerleader. if the mountain does not come to you, you go to the mountain.
GiCi

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homefront
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Post by homefront » Thu Oct 22, 2009 3:56 am

THanks Cheer, Lew and all

my wife has been getting occasional headaches

Homefront

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wonky1
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Will this work

Post by wonky1 » Thu Oct 22, 2009 6:05 am

I have a plan, please tell me what you think its chances of success are

In order to be referred to a vascular surgeon for a venous drainage problem as GiCi suggested. I thought it may be a good idea to go along to my local private hospital and pay the hopefully modest price to have them do a Doppler ultrasound of my jugulars and azygous vein
Then armed with irrefutable evidence of a problem in venous drainage, search for a vascular surgeon willing to correct it.

This plan doubtless has holes in it, please point them out, is a Doppler likely to be enough?
Thanks and apologies if this has been covered before.

Wonky

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GiCi
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clever plan

Post by GiCi » Thu Oct 22, 2009 6:54 am

wonky1,
I think your plan will work and it is the only practical way to achieve what you want.
GiCi

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Post by radeck » Thu Oct 22, 2009 7:22 am

GiCi, you may have mentioned this before but could you say again whether your second time stenosis and angioplasty was in the same area(s) as the first time, or new (additional?) areas? Thank you.

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Re: Will this work

Post by NHE » Thu Oct 22, 2009 12:22 pm

wonky1 wrote:I have a plan, please tell me what you think its chances of success are

In order to be referred to a vascular surgeon for a venous drainage problem as GiCi suggested. I thought it may be a good idea to go along to my local private hospital and pay the hopefully modest price to have them do a Doppler ultrasound of my jugulars and azygous vein
Then armed with irrefutable evidence of a problem in venous drainage, search for a vascular surgeon willing to correct it.

This plan doubtless has holes in it, please point them out, is a Doppler likely to be enough?
Thanks and apologies if this has been covered before.

Wonky
The most obvious issue that I can see is getting the Doppler study done correctly in agreement with Dr. Zamboni's procedure (even Dr. Dake's Doppler technician was having difficulty finding problems with patient's veins when the MRV clearly indicated the presence of stenosis). The type of Doppler that Zamboni uses is called a transcranial Doppler. You can search the forum to get more information about it. If I remember correctly, there was a link to a youtube video by Zamboni that discussed the procedure.

NHE

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GiCi
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site of stenosis

Post by GiCi » Thu Oct 22, 2009 12:40 pm

radeck,
The stenosis re-occurr at the same level they were before.
GiCi

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6max
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Post by 6max » Sat Oct 24, 2009 10:46 am

I 'm Max from Italy

I 've PPMS with ATAXIA . In your opinion after surgery I'll walk better?

Thanks a lot
PS I think I' ve a bug in my computer because I write english and after I read arabic 8O
Last edited by 6max on Sat Oct 24, 2009 11:44 am, edited 1 time in total.

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Post by radeck » Sat Oct 24, 2009 10:51 am

On the other side many ballooned veins (I think this is what Max means by angioplasty) re-collapse in 50% of patients after 18 months. The best way to go seem absorbable stents, which dissolve completely after 12-18 months. In that case some of the surrounding tissue may have had time to re-adjust, and accommodate the wider vein. This can be monitored so just in case the vein re-collapses after 2 years, a new absorbable stent is put in.

6Max, are you saying you're able to walk better or not after the liberation procedure??
Last edited by radeck on Fri Dec 18, 2009 9:59 pm, edited 1 time in total.

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6max
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Post by 6max » Sat Oct 24, 2009 10:55 am

of course

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