Thanks Michelle. No I won't give up. I'm that sort of person. Tenacity should have been my middle name although it has to be said that this is not always a virtue!
I'm still struggling with the differences between the MRI and MRA/MRV. I know that the former is totally non-invasive but can that also be said for the latter? From a practical pov I need to have evidence of venous stenosis in order to get a vascular surgeon to operate. However, if that evidence gathering process necesitates an invasive procedure then how is that obtained? Its a kind of chicken and egg situation.
I will follow up a search on Gibbledygook's posts. I do remember reading some of his posts but I will now look with a fresh interest.
First liberation procedure in UK
Acol
we have an appointment this afternoon to discuss neorostimulation procedure for my wife's intention tremor.
Will bring up ccsvi and see what reaction we get.
Will let you know
We also asked our GP to get hold of MRI scan for us but not sure how much this would show for ccsvi. Need to read up as you are as I believe it may not show anything and more specific scans needed (MRV etc)
Best Wishes
Homefront
we have an appointment this afternoon to discuss neorostimulation procedure for my wife's intention tremor.
Will bring up ccsvi and see what reaction we get.
Will let you know
We also asked our GP to get hold of MRI scan for us but not sure how much this would show for ccsvi. Need to read up as you are as I believe it may not show anything and more specific scans needed (MRV etc)
Best Wishes
Homefront
Progress
I saw my G.P. today and it went rather well.
She will try to get me an NHS MRV but if that proves impossible she is happy to refer me to a private hospital.
Yes finding one who can do it may be tricky, but I'm buoyed by that and feel were on the first step of the ladder.
I'm all googled out for today, does anyone know where this can be done?
She will try to get me an NHS MRV but if that proves impossible she is happy to refer me to a private hospital.
Yes finding one who can do it may be tricky, but I'm buoyed by that and feel were on the first step of the ladder.
I'm all googled out for today, does anyone know where this can be done?
Getting a venogram
I had a chat with Dr Baker this morning and he stated very clearly to me that he and dr Collins are not prepared to treat MS patients at the present due to lack of a randomized study.
Both are enthusiastic about Zamboni's idea and are looking in the possibility of setting up a trial in Belfast.
I know well the burocracy that exists in the hospital and even if they succeed it will take years before we see any result.
We can therefore only hope that the evidence will be provided by other centres and that everybody will be forced to follow.
It is frustrating.
GiCi
Both are enthusiastic about Zamboni's idea and are looking in the possibility of setting up a trial in Belfast.
I know well the burocracy that exists in the hospital and even if they succeed it will take years before we see any result.
We can therefore only hope that the evidence will be provided by other centres and that everybody will be forced to follow.
It is frustrating.
GiCi
I am sorry that this effort was not more quickly producing results, but at least these people are aware. As frustrating as it is you are right that of course this is how such things are done. Gici, if you do cardiac surgery is it not possible for you to treat others? what stops you? Is there no private hospital that gives you freedom to choose how to treat people? I am AMerican have no idea how your medical system works...I hope I am not too silly.We can therefore only hope that the evidence will be provided by other centres and that everybody will be forced to follow.
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
We had a consultation with my wife's new neurologist yesterday and after a long conversation for him to familiarize himself with what has gone before, we broached the subject of ccsvi.
We took Mark Haacke's website page with all the links to the studies. He acknowledged that lesions occur around blood vessels and recognised some of the quoted evidence. He even stated that he subscribes to one of the journals mentioned and was surprised that he had missed the article.
He asked if he could keep the printout and said he will look into it.
He was surprised that so many people have had the liberation procedure.
His parting comment was 'I don't think I'll be sending you to have things put in your veins anytime soon'.
We didn't react as he could be referring to the time it takes to get these ideas into practice and to get emotional is probably not good this early on in ccsvi.
The important thing is he agreed to look at it.
We have a follow up in January but it may be wise for my wife to call in a week or two to enquire on his thoughts. Will let you know of outcome.
All the best
Homefront
We took Mark Haacke's website page with all the links to the studies. He acknowledged that lesions occur around blood vessels and recognised some of the quoted evidence. He even stated that he subscribes to one of the journals mentioned and was surprised that he had missed the article.
He asked if he could keep the printout and said he will look into it.
He was surprised that so many people have had the liberation procedure.
His parting comment was 'I don't think I'll be sending you to have things put in your veins anytime soon'.
We didn't react as he could be referring to the time it takes to get these ideas into practice and to get emotional is probably not good this early on in ccsvi.
The important thing is he agreed to look at it.
We have a follow up in January but it may be wise for my wife to call in a week or two to enquire on his thoughts. Will let you know of outcome.
All the best
Homefront
frustration
mrodhes40,
In this country one can only practice the kind of surgery one has being appointed for by the hospital. I was appointed as consultant cardiac surgeon and I can therefore only do cardiac surgery, although I am a specialist in vascular surgery as well. A private clinic here would not allow me to perform vascular procedures because vascular surgery is not included in my hospital practice ( and they would be right because I have not done a vascular operation for the last thirty years or so).
I feel we are like mice in a maze, trying all possible corridors and ending up against a wall all the times (neurologists!!). I am confident that a corridor will open in the not too distant future. In the mean time let's continue to bang our head against the wall.
GiCi
In this country one can only practice the kind of surgery one has being appointed for by the hospital. I was appointed as consultant cardiac surgeon and I can therefore only do cardiac surgery, although I am a specialist in vascular surgery as well. A private clinic here would not allow me to perform vascular procedures because vascular surgery is not included in my hospital practice ( and they would be right because I have not done a vascular operation for the last thirty years or so).
I feel we are like mice in a maze, trying all possible corridors and ending up against a wall all the times (neurologists!!). I am confident that a corridor will open in the not too distant future. In the mean time let's continue to bang our head against the wall.
GiCi
A small group of us in the North East US are doing an email outreach campaign to make sure interventional raidologists know about CCSVI. One of the links we used to build our list is this:
http://www.springerlink.com/content/j82 ... pdf?page=1
We felt that we had a better chance of getting recogition if people were familiar with Dr. Dake, so I search thru every doctor on the attached list to see if they were in our geographic area and then we contacted them, with some very good responses.
There are some doctors in the UK on this list Hopefully you can reach out to them and they will have te wherewithall to contact Dr. Dake to find out more.
http://www.springerlink.com/content/j82 ... pdf?page=1
We felt that we had a better chance of getting recogition if people were familiar with Dr. Dake, so I search thru every doctor on the attached list to see if they were in our geographic area and then we contacted them, with some very good responses.
There are some doctors in the UK on this list Hopefully you can reach out to them and they will have te wherewithall to contact Dr. Dake to find out more.
GiCi, well, in that case we just have to find you a country where you would be allowed to do the procedure, all chip in to buy you a nice practice and a house to live, and I'm sure you'd make a good living by performing it on some of the several million MS patients that will be looking for a place to get it done over the years to come... 
-
gibbledygook
- Family Elder
- Posts: 1420
- Joined: Mon Feb 14, 2005 3:00 pm
- Location: London
- Contact:
Hi all,
Sorry for not posting. I spent many fruitless weeks/months after the first Zamboni papers trying to get neurologists and vascular specialists in the UK interested. None of them were interested. I suspect that the best option would be to contact Dr Simka in Poland where costs, although in Euros are likely considerably cheaper and at least he is developing real expertise in finding stenoses.
Actually I don't think Poland has joined the Euro zone yet so it could still be very cost effective.
Dr Marian Simka *
Department of Angiology, Pszczyna, Poland
email: Marian Simka (mariansimka@poczta.onet.pl)
*Correspondence to Marian Simka, Department of Angiology, Pszczyna, Poland
Sorry for not posting. I spent many fruitless weeks/months after the first Zamboni papers trying to get neurologists and vascular specialists in the UK interested. None of them were interested. I suspect that the best option would be to contact Dr Simka in Poland where costs, although in Euros are likely considerably cheaper and at least he is developing real expertise in finding stenoses.
Actually I don't think Poland has joined the Euro zone yet so it could still be very cost effective.
Dr Marian Simka *
Department of Angiology, Pszczyna, Poland
email: Marian Simka (mariansimka@poczta.onet.pl)
*Correspondence to Marian Simka, Department of Angiology, Pszczyna, Poland
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,
BSIR
Hi all
Today I emailed The British Society of Interventional Radiologists from their website www.bsir.org via the contact link, top right of their website.
I asked to be put in touch with an interventional radiologist who would be prepared to pioneer the procedure in the U.K.
It has occurred to me that this is a very small email in a very large inbox.
If the rest of you were prepared to email them as well, then we might register on their RADAR and get a positive response.
If we all shout at once, we might be heard.
Also thanks to Gibbledegook for Dr Simka's details, I'm going to try there too.
Today I emailed The British Society of Interventional Radiologists from their website www.bsir.org via the contact link, top right of their website.
I asked to be put in touch with an interventional radiologist who would be prepared to pioneer the procedure in the U.K.
It has occurred to me that this is a very small email in a very large inbox.
If the rest of you were prepared to email them as well, then we might register on their RADAR and get a positive response.
If we all shout at once, we might be heard.
Also thanks to Gibbledegook for Dr Simka's details, I'm going to try there too.