First liberation procedure in UK

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

Postby radeck » Sat Oct 24, 2009 12:04 pm

I take this to mean you're better. Great! Hey, this is going off-topic here, but I have an Italian translation of the CCSVI tracking project thread here. Would you be willing to contribute? Do you know other Zamboni patients who might be able and willing to do so? I believe this is one of the most important ways we can raise the attention of docs.
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Postby 6max » Sat Oct 24, 2009 12:23 pm

I' m very, very sorry :oops: :oops: :oops:
I speack Italian very well but I can't speack english... :oops:
I 'm 48 years old but I haven't never surgered.
I asked if after surgery( ballonning) I 'll walk better, alone finally
Now I Walk like a drunk and I can't walk alone but only with my wife ( I walk like a drunk and after fall down)
Sorry for my english ( I speach better in my language...)
Thanks a lot
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Postby 6max » Sat Oct 24, 2009 12:34 pm

I thinks that after stent it's difficult remove it .
Now I 'm 48 years old, 6,5 EDSS,and walk only with my wife.
After angioplasty with balloning I' ll can walk alone (with or wihout cane but without my wife)??
Thanks a lot
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Postby mrhodes40 » Sat Oct 24, 2009 1:03 pm

Thank 6max! Your meaning is understood! that is what matters :D
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
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Postby acol » Sun Oct 25, 2009 7:14 am

cheerleader wrote: 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.



I have been trying to find out the differences between MRI and MRV. I am assuming that they are both non-invasive procedures? Do they both use the same machine? Is the difference the location of the scan or the expertise of the operator? I am in the process of trying to find a suitable hospital which could carry out the first stage of the procedure in order to obtain the justification for the prescription to get the venogram. From all that I have read a MRI scan or indeed a doppler, may not reveal stenosis in the veins. This would depend on the skills of the operator and in the UK CCSVI would appear to be a new concept. It would need to be a MRV.

I would be very grateful if someone could point me in the right direction to get more information on this key subject.
Nigel
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Postby acol » Sun Oct 25, 2009 7:19 am

Wonky1

As an aside I would be quite happy to pool our knowledge. It would seem that we both have the same ambition and we would appear to live in fairly close proximity.
Nigel
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collaboration

Postby wonky1 » Sun Oct 25, 2009 9:53 am

Hi acol
Pooling our knowledge is a great idea!
I'm afraid I've not made much progress yet.
So far I have been refused by mr Baker's secretary.
I took the research paper to my G.P. She offered encouragement but said the care trust would not pay for it and it would be difficult to prove a suspected stenosis without referring to Zamboni.
She has left the practice so I'll start afresh next week.
I emailed two private hospitals asking them to do a doppler, one has replied saying that they would need a referral as it sounded quite specialist, the other hasn't replied yet. I did ask for a radiologist familiar with Zamboni's work, so I guess they were a bit confused by that.
I too am doubtful that a doppler will be enough as they won't be trained in ccsvi, so just a desperate shot in the dark really.
My next mission will be to try to get an MRV. I'm not sure how to go about that yet. I don't mind paying, if they will only refer me.
I was going to reply to you with a private message as I don't want to clutter the thread.
Probably better to communicate that way and then put any progress in the thread for others to follow.
What do you think?
And thanks for making contact.
Wonky
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Postby whyRwehere » Sun Oct 25, 2009 10:04 am

I don't know...I like following your whole story...
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Postby acol » Sun Oct 25, 2009 11:12 am

Hi Wonky1

I'm glad you approve of the concept. I too contacted Dr Baker's secretary. She told me that Dr Baker didn't do private work at the present and I see no likelihood of a NHS referral. I am toying with the idea of at least mentioning it to my GP to keep her in the loop , so to speak. I could remind her that I have suffered from intermittent 3 day long headaches ever since I was first diagnosed with MS (recorded on my medical records). This could be a useful starting point for obtaining the protocol for at least getting a MRI/MRV scan. I obviously realise that I will have to pay for such test but hopefully I may gain some information as to where and who to go for to get such a test. My local private hospital lists MRI but not MRV scans - hence my previous query on this board.

I personally do not favour deliberate deception but there may be a case for being economic with the truth. Obviously I cannot conceal my MS nor would I wish to do so. I envisage approaching a vascular surgeon/radiologist along the lines of -'I am concerned with my health in general and as a consequence of Zamboni's and others work I believe that I may have venous stenosis. This may be the cause of my headaches as well as having a detrimental affect on my general health and state of mind. Accordingly, I would like to be tested and if stenosis is found, treated. I know this won't have any affect on my MS (nose growing longer..) but it may improve my general health.'

While I'm quite happy to post publicly, it may be preferable to exchange private e-mails and save this board for progress or otherwise. I am mindful of 'whyRwehere's' comment but that may not be shared by others? Having said that this thread seems to be mainly concentrated on the practicality of getting treatment for people in the UK.

Finally, I did e-mail Dr Zamboni and will report if he replies.
Nigel
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Postby px125 » Sun Oct 25, 2009 6:11 pm

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2877

From UK, but not about the first UK patients. Sorry if this link has been previously posted (please correct my english)
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Postby wonky1 » Mon Oct 26, 2009 2:15 am

Hi
My reticence regarding posting here is due to my lack of progress, you're right acol, this is a thread for progress in the U.K. so I suppose it's all quite pertinent. Please be assured that once I have something to report, I will be shouting it from the rooftops.
Progress though, is eluding us at the moment.
As going to Stanford is not really an option for me, I seem to be stuck waiting for an appointment with a G.P. and hoping, yet doubtful, that they will refer me for an MRV.
This, I'm sure you will all agree is totally unsatisfactory and frustrating to say the least.
I see this thread has had over 4000 views already. If there is anyone out there, particularly Neuro's, Vascular surgeons, Radiologists, or anyone "in the trade" who has a better idea of how to proceed, then please post your thoughts. We can't wait for further proof of efficacy, so please, please offer advice that may get things moving.
Holding on in quiet desperation is no longer an option.
Thanks
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Postby homefront » Mon Oct 26, 2009 3:14 am

We are near London, UK and would very much like to follow this thread as far as how to get things started for ccsvi detection and treatment in the UK.
We went to GP couple of days ago and she wasn't at all interested in ccsvi saying that it was all down to government research and that she would only follow advice for referrals from the 'proper' channels. I asked her to look up ccsvi and she said she might 'for her own interest'. I'm not hopeful she will though.
We also tried to get her to prescribe blood test for 25(oh)D levels but she said at the last time of testing, levels were normal. When we pointed out that with MS there could be a benefit from higher dosage she closed off to the idea and handed back the supporting paperwork we had brought along.

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Homefront

wife diagnosed ppms 2007
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Postby acol » Mon Oct 26, 2009 4:56 am

px125

Thanks for that link. The article includes information about a UK citizen who had the procedure carried out at Stanford using 2 stents. The procedure lasted 2.5 hours. I have e-mailed MSRC and asked if they will let me have his contact address. I don't know if he is a subsriber to this website.
Nigel
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Postby acol » Mon Oct 26, 2009 5:15 am

Hi Homefront

Welcome to the club - trying to get the procedure if you live in London or the home counties!

With at least 3 of us on the job we have a better chance of getting somewhere. However, it is frustrating speaking to doctors and people who are supposed to have our best interests at heart. They don't understand that time is not on our side. I am 6.5 on the EDSS scale (self tested) and my condition is relentlessly progressive. Neurophatic pain is getting worse and I still get the usual garbage that I have to be patient. I wouldn't mind so much if those in the health industry kept an open mind and were receptive to new ideas.

Rant over!
Nigel
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Postby bestadmom » Mon Oct 26, 2009 5:21 am

Acol,

Gibbledygook is the UK resident who had stents done in Stanford in June. He's on this site, and you can search on his names to see his posts.

Good luck bringing this to the UK. Would researchers at university hospitals be more open-minded? I'm findimg that there is curiousity in the US with many in this group. Look at interventional neuroradiologists.

Look for people who might know Dr. Dake from boards he sits on, etc. YOu want someone who is willing to pick up the phone and contact him, or Dr. Simka.

Good luck and don't give up.

Michelle
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