First liberation procedure in UK
liberation procedures
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
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
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
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
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.
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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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.)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
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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?
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
stents
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
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
Will this work
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
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
clever plan
wonky1,
I think your plan will work and it is the only practical way to achieve what you want.
GiCi
I think your plan will work and it is the only practical way to achieve what you want.
GiCi
Re: Will this work
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.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
NHE
site of stenosis
radeck,
The stenosis re-occurr at the same level they were before.
GiCi
The stenosis re-occurr at the same level they were before.
GiCi
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
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
Last edited by 6max on Sat Oct 24, 2009 11:44 am, edited 1 time in total.
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??
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.