Has any body experience of the neuro reaction to treatment? My wife is under a great neuro at Queen's Sq and we have yet to discuss (need to do it soon) but we do not know what the reaction will be. The medical establishment in he UK appears negative so perhaps it will not go down well - we would rather support. Also - I guess one would stop dmd's after liberation. Any experience on both points?
note. Booked to have a scan in Aug.
CCSVI Treatment in UK - Essential Health
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whyRwehere
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Apologies for putting it in the title. I guess this is difficult because to my knowledge this organisation is the only one currently offering treatment in the UK. I was not sure about this post as this is international forum and my concerns re neuros is UK specific although I understand there is skepticism all over. I was hoping somebody in the UK may be in a similar position to me and could offer some advice/support. Sorry if my post offends or breaks any rules - far from advertising I will have a hefty bill to pay; but then that goes for treatment in any country.
Re: CCSVI Treatment in UK - Essential Health
Were UK based and both neuros we have dealt with have been very scathing about this new treatment.quarkrad wrote:Has any body experience of the neuro reaction to treatment? My wife is under a great neuro at Queen's Sq and we have yet to discuss (need to do it soon) but we do not know what the reaction will be. The medical establishment in he UK appears negative so perhaps it will not go down well - we would rather support. Also - I guess one would stop dmd's after liberation. Any experience on both points?
note. Booked to have a scan in Aug.
As this seems to be the only hope on the horizon for MS patients so far-and not perfect results either, meaning it seems to help some and not help others that much in an obvious way-we will be having the treatment.
Not entirely convinced that we will get the best treatment from these guys because they are new and inevitably there will be some teething problems when diagnosing etc.
We don't fancy the idea of waiting but we have decided for the Poland option as we feel we will be in the hands of a more experienced team and will feel more confident about any outcome from them.
Going to give these guys at EH a year or so, and if there is positive news from patients who have been, then of we are still waiting for Poland we might go for it.
Hope that helps!
My neuro was very dismissive too, and told me not to think about going abroad for treatment (there was no suggestion of treatment being available in the uk then).
I have decided on the 'wait and see' plan of action. I await reports from the first people through EHC's program excitedly, and might go there for testing (I am on the waiting list) but don't intend to pay their extortionate fee for liberation or undergo treatment in another country, with all the problems regarding follow-up and restenosing.
If I get tested and have signs of CCSVI, I will then campaign vociferously to be treated on the NHS. If favourable results keep coming from those liberated I really can't believe our NHS will not eventually offer liberation to those of us with compromised veins...or maybe I am very naive.
I have decided on the 'wait and see' plan of action. I await reports from the first people through EHC's program excitedly, and might go there for testing (I am on the waiting list) but don't intend to pay their extortionate fee for liberation or undergo treatment in another country, with all the problems regarding follow-up and restenosing.
If I get tested and have signs of CCSVI, I will then campaign vociferously to be treated on the NHS. If favourable results keep coming from those liberated I really can't believe our NHS will not eventually offer liberation to those of us with compromised veins...or maybe I am very naive.
I wrote to both Neuro and Dr about CCSVI, quite a long and well thought letter pointing out we weren't expecting this to be a miracle but best case scenario is it slows or stops progression.
The Neuro obviously didn't even read the letter as he referred to it as a a new miracle cure that will prove to be rubbish and will go the same way as every previous miracle cure.
Dr didn't reply.
We got an appointment for Emma at EHC on 12th July. I will report how things proceed.
I have no affiliation with EHC just for the record, My partner, Emma has had RRMS for 12 years (she is 37).
I though the fees wee a little strong but I'm more comfortable staying in the UK. Also EHC have actively sought direct training from Prof Zamboni and his staff.
In my mind it's worth a shot.
The Neuro obviously didn't even read the letter as he referred to it as a a new miracle cure that will prove to be rubbish and will go the same way as every previous miracle cure.
Dr didn't reply.
We got an appointment for Emma at EHC on 12th July. I will report how things proceed.
I have no affiliation with EHC just for the record, My partner, Emma has had RRMS for 12 years (she is 37).
I though the fees wee a little strong but I'm more comfortable staying in the UK. Also EHC have actively sought direct training from Prof Zamboni and his staff.
In my mind it's worth a shot.
I hope it goes better for you then for us.quarkrad wrote:Thank you all for your replies - good to see there are other people in the same situation. We are due to see our GP soon to discuss - I'm sure I've read some people have had liberation treatment done by Veno surgeons but others have been refused when MS is mentioned. Will let you know what happens.
Our GP refused to prescribe vit d3 and LDN unless he had a letter from the consultant giving him permission.
GP's are mostly rules by PCTs' and don't stand up for patients, their too busy looking after their own interest. Used to sell to the guys so I should know!