Bringing Liberation to the UK

[lilaclomax]

I have not posted on this site yet.. did post on the UK MS site but since then I have just hit dead ends

I found 3 radiologists willing to carry out an ultrascan through referral from my gp.. until I told them what it was for, 1 said he didn't know anything about CCSVI so couldn't offer the scan. The other two said they would look into the procedure and CCSVI, one called me back two days later and said that their equipment was not specialised enough (??) and the third I chased for over a week until the receptionists took pity on me and said that he was not going to be available to talk to me as the hospital cannot carry out unknown procedures.

The only good thing to come out of this so far is that AXA (my healthcare insurance provider through work) has said they would pay out for an Ultrasound if referred from my gp and MRI scans if I get a consultant to refer me. They cannot say about payment for treatment until I get the results though BUT ONLY IF IT IS DONE IN THE UK!

On a happier note, I always cover all bases and I am booked in to see Dr Simka in March

If someone does find a radiologist willing to scan please point me in the right direction..

[Dovechick]

Training in the procedure is necessary for a proper assessment of the condition and the results, so it is not surprising that these radiologists were unable to help you. The contact I am talking to told me that a special algorithm had been worked out by Prof Zamboni to calibrate the machines used for the diagnosis.

[colmmc]

I have now had my Petition given the go a head
so please get signing ,And pass it on
Thanks
Colmmc





http://petitions.number10.gov.uk/CCSVINOW/

[Dovechick]

Done that, thanks Colmmc. I will pass the link on to other people.

[LouK]

I have not posted on this site yet.. did post on the UK MS site but since then I have just hit dead ends

The only good thing to come out of this so far is that AXA (my healthcare insurance provider through work) has said they would pay out for an Ultrasound if referred from my gp and MRI scans if I get a consultant to refer me. They cannot say about payment for treatment until I get the results though BUT ONLY IF IT IS DONE IN THE UK!

On a happier note, I always cover all bases and I am booked in to see Dr Simka in March

If someone does find a radiologist willing to scan please point me in the right direction..

That is good new as I have PMI too and was hoping that I may be able to use it to get me tested. Please keep us informed if you manage to progress things further.

[SkallyWags]

Hi Colmmc, nice work. Petition signed and passed on.

[SkallyWags]

Hi Colm, my sister reminded me that with the LDN petition the response that came back was that no application had been made to the Health Technology Asessment department. So it would be good if we could apply to the HTA for the NHS to gain knowledge of CCSVI and the Liberation treatment.

The form can be found here http://www.hta.ac.uk/suggest/index.shtml

I was about to fill it in, but I think my knowledge on where we are with CCSVI is outdated. I know of Dr Zamboni's trial with 65 MS patients and 235 controls. But I have since read that over 500 MS patients have been tested - does anyone have any papers explaining this that we can include in the application?

[Dovechick]

Skally waggs, Colm might like to do it, or if any one else does it let us know. I don't want to jump into something others have started but if no one feels like doing it I will give it a go.

Marie wrote on the facts thread that she keeps updating:

please go to page one of this thread and read post 2. That post has all the research links and they are constantly updated so you can read the currently available papers

and the link to that thread is here:
http://www.thisisms.com/ftopic-7098-day ... asc-0.html

[SkallyWags]

Hey Michele, happy new year.

After I posted the comment I did think you may have the knowledge to fill in the form. The way I see it we are all working towards the same goal, so if you feel confident that you can put forward a strong case then go for it. Let us know if you do. All the best.

An exciting start to 2010!

P.s my husband managed to get an MRV at our appointment with the radiologist. However the radiologist could only scan his neck and brain - not his chest. These scans came back clear - however as he has primary progressive ms this is not surprising - 9 out of 10 pons patients in Dr Zamboni's trial had blockage in the azygous vein which is in the chest. We now have to try our best to get a neurologist to give us a referal to the radiologist to scan my husband's chest as the private hospital doesn't have the facility to scan the chest.

[colmmc]

Go for it Guys I'm not precious about it feel free lets all push together.
Colm

[Dovechick]

Ok I will give it a go... If I come unstuck I will be back to consult and if poss I will post here before I send it off...

[Dovechick]

I have filled in the form but not sent it yet, if anyone is around please read and comment I will keep it open until this evening.

*Describe the health technology:
~Diagnosis of Chronic Cerebrospinal Venous Insufficiency (CCSVI)using ultrasound and MRV. Followed by treatment if necessary which could be balloon angioplasty/PTA or stenting.
*Describe the patient group and health care setting:
~It has been demonstrated the people suffering from Multiple Sclerosis (MS) have narrowing of veins draining the brain. The diagnosis of MS could be achieved more quickly using the ultrasound technique developed by Prof Zamboni should research in this country confirm his findings. Early treatment of MS is likely to benefit patients greatly.
*State why this research or evidence is important to the NHS:
~It is estimated that there are about 85000 people suffering from MS in this country. These patients need more and more clinical and ancillary care as their disease progresses, this is a serious economic burden on the NHS. Additionally this would be another string in the neurologist's bow.
*Provide any information you can on existing evidence:
~Here are links to research papers:
http://www.ms-info.net/Intracranial_Ven ... erosis.pdf
http://www.bentham.org/cnr/openaccessar ... /006AG.pdf
http://www.ncbi.nlm.nih.gov/pubmed/1914 ... d_RVDocSum
Additionally further material can be found at this site:
http://www.thisisms.com/ftopict-7098.html

[colmmc]

Good Work, Dovechick.
This should not be ignored.
colmmc.

[SkallyWags]

Yeah good work.

I just want to check, in response to the second question you wrote "diagnosis of MS could be achieved more quickly" is that right or is it diagnosis of CCSVI? sorry if it is a stupid question - I am still getting my head around all the info.

Fingers crossed. Xx

[Dovechick]

Well, if further research confirms that all people who have MS have CCSVI as Prof Zamboni's research suggest, then it will be another tick on the list of things that help doctor diagnose MS. It is really difficult at the moment to be sure of diagnosis especially in someone who is not severely affected, as the symptoms can be so varied, and individually apply to any number of diseases or conditions. In terms of what is good for the NHS, this is a positive, as is early treatment of the condition.

I'm going to send the form off now, since both you and Colm have had a read. I'm also going to forward the link to the contact I have in the Ultrasound equipment manufacturer...