First liberation procedure in UK

[homefront]

Thanks Wonky1

I just sent email to them as follows

"my wife has primary progressive multiple sclerosis (diagnosis 2 years ago). There has been research carried out into a possible cause for MS other than the current thinking that it is purely an autoimmune disease.
This research has looked at chronic cerebrospinal venous insufficiency (ccsvi) as aproposed cause. This, and excuse my limited medical knowledge, is a blockage of the veins (jugular and azygas) in the lower brain and top of spine. It has been shown that the lesions that occur in ms occur in the locations of these veins. The blockages are causing reflux of the deoxygenated blood and depositing iron in these locations. The immune system is targetting these zones and this where the myelin/axon damage is occuring.
This is all explained much more eloquently on the website www.ms-mri.com which has been set up by E Mark Haacke. This website provides links to the research being done by Professor Zambini in Italy and other papers relevant to this.
There is also work being carried out by Dr Michael Dake at Stanford, California.
What I am asking is could you please put me in touch with an Interventional Radiologist who would be interested in pioneering work in this important area in the UK.

Great idea. Lets hope we get some positive response!

Homefront

[GiCi]

Thank you radeck for the nice proposal. Unfortunately I am too old to be able to contemplate a relocation and a change of practice.
GiCi

[whyRwehere]

Just a couple of typos...it's Zamboni and Azygous or Azygos

[homefront]

Sorry about the typos. Hope they'll follow the links from the website and get a much better explanation than I am able to give.

[wonky1]

I bothered The British Society of Interventional Radiologists again today.
They replied a couple of days ago that they will make enquiries and contact me with any information.
I sent a link to this site today so they are well informed.
Thank you Acol for your excellent email.
Please, everyone else mail them, it may help and costs nothing.

[wonky1]

I meant thank you homefront, oops.

[LR1234]

Its nice to see more UKers on the site:)

[acol]

Wonky1

You got me thinking 'What e-mail was that?' Your subsequent e-mail clarified that it was 'homefront's contribution!

It will be interesting to see what response you get from the British Society of Interventional Radiologists. Without doubt your idea of e-mailing the Society was better than my idea of trying to contact individuals. I have received nothing from Professor Andreas Adam.

This is the reply that I received from Professor Zamboni's secretary.

"I suggest you to check frequently the web site www.fondazionehilarescere.org in which you may find a lot of information. When the contacts page will be ready you may write to the President of the Foundation. He may work in order to define a package including diagnostic assessment and treatment also for foreigners. Professor Zamboni can not currently see new patients (both Italians and foreigners) due to bureaucratic/administrative obstacles. Probably it will be possible strarting from next year."

[GiCi]

If Zamboni himself is prevented to see new patients what hope do we have that his followers around the world will experience better treatment?
The lobby of the neurologists has to be more powerful that we ever imagined and I sincerely hope that their war against CCSVI is dictated by clinical belief (wrong as it might be) and not by financial interests. It would be a crime should the second hypothesis reveal itself to be true in the future.
All this should not however weaken our resolve to continue the battle and we should do all we can to break down the wall of neurological resistance to change. (Remember Berlin).
GiCi

[Sharon]

GiCi
you wrote

If Zamboni himself is prevented to see new patients what hope do we have that his followers around the world will experience better treatment?
The lobby of the neurologists has to be more powerful that we ever imagined and I sincerely hope that their war against CCSVI is dictated by clinical belief (wrong as it might be) and not by financial interests

and Acol quoted from Zamboni's Secretary .

Professor Zamboni can not currently see new patients (both Italians and foreigners) due to bureaucratic/administrative obstacles. Probably it will be possible strarting from next year

GiCi - do you think the bureaucratic/administrative obstacles are due to the lobby of the neurologists? Or, is it because of the medical system in Italy? Zamboni saw patients in his study because the Hilarescere Foundation was paying for the reseach. Now that he wants to treat the public, maybe the medical system (i.e. insurance) is saying "no". I am just curious --- I obviously have no idea living here in the U.S. Gosh, I hope it is not the neurologists -- this may be a bigger battle than we thought.

Thanks, GiCi
Sharon

[Lyon]

oo

[bestadmom]

We are encountering similar obstacles in our outreach to doctors in the North East area of the US.

As soon as one of the doctors we contact asks the neurologists about CCSVI, they are told it's bunk. If we ask the interventional radiologist/vascular doc to take CCSVI at face value, and leave MS out of the equation, there is no reason to treat CCSVI since it is not a cause of anything more serious (according to the docs). Until there is data that proves CCSVI is causative of something, MS or not, there will be apprehension and reluctance to treat it.

Treating CCSVI will catch on one doctor at a time. The credibility and personal/business connections of the few doctors who are doing the surgery is what will get others on board.

[LR1234]

Its all down to the personal experience of a dr to whether they become interested in my opinion.

For example I rallied my dr for ages about letting me try LDN and he wouldn't and said there is no evidence and we have to look at the risks etc....but after 4 of his proactive patients with MS ignored him and got the medicine from elsewhere and had improvements my dr changed his mind and prescribed it for me.

I agree a study is the only true way to bring the treatment to the masses but each one of you that has the CCSVI procedure and continues to have regular check-ups by your neuro will either show an improvement due to CCSVI procedure or not to the neuro.

If there is an improvement I am sure the neuro will make a mental note (even if he still thinks it was a fluke) until the next patient has it done and improves..and the one after that!!

[radeck]

6max mentioned something similar, that Zamboni can not see more patients because of public opinion issues or something like that. I suppose we're not sure what that means.

Lyon, I disagree with you here. Unless neurologists have concrete reasons to suspect that CCSVI procedures will worsen the condition of an MS patient or are dangerous in other ways, it might be hard to critique doing e.g. simple balloon angioplasty. Other vascular specialists/interventional radiologists may be the most qualified to critique such an intervention.

[cheerleader]

We are encountering similar obstacles in our outreach to doctors in the North East area of the US.

As soon as one of the doctors we contact asks the neurologists about CCSVI, they are told it's bunk. If we ask the interventional radiologist/vascular doc to take CCSVI at face value, and leave MS out of the equation, there is no reason to treat CCSVI since it is not a cause of anything more serious (according to the docs). Until there is data that proves CCSVI is causative of something, MS or not, there will be apprehension and reluctance to treat it.

I don't want to write in broad strokes and malign neuros, but the majority of them do not want CCSVI to even be considered. As one prominent doc said to me at cocktail hour in Bologna (before he knew who I was) "I hope this isn't true, or else I'm out of a job." Professions, livelihoods and a successful business model are at stake.

Dr. Dake took Jeff as a patient because he is an interventional radiologist, had just met Zamboni, and saw this as a unique challenge. When we looked at Jeff's MRV, he said he could fix Jeff's malformed jugulars....but he had no idea how it would impact Jeff's MS. What he did say was that Jeff's jugulars were "not good for his brain health". We proceeded with that alone in mind.

As Jeff is 6 months out from his procedure, recovered from his dreadful MS fatigue, sleeping deeply at night without apnea or spasms, with no relapses or progression and only healing...we know Dr. Dake was right to treat him. But do we have the "proof" needed to convince the neurological community he is healed of MS? No. That may take five years. Ten years, a life time. I do not know.

Michelle is absolutely right. If MS patients want to be tested and treated for CCSVI NOW, we need to take MS out of the CCSVI equation. There will be curious neurologists (the SUNY system, Bologna Un., Dr. Frohmann and others) that will speak, study and write about this in relation to MS. But they will be few and far between. No doctor can stop another doctor from treating a patient for a venous disorder. The neuros may own "MS"-because Charcot got to name it rather than Rindfleisch with his "disease of venous congestion"-but they do not own your bodies.

Keep putting the info out there, but don't be discouraged with the push back. MS is considered a billion dollar growth sector for pharma. (Did you ever notice that most of the google news stories on MS are from financial publications? Why?)

I know some posters are going to come on now and give me crap for "cheerleading" and personalizing this issue....but honestly, if it weren't for this site and Dom and dignan's posting of Zamboni's research, Jeff would still be sleeping most of the day. There's a bit of survivor guilt here.
hang in there-
cheer