Chronic Cerebrol Spinal Vascular Insufficiency
I heard a radio report about MS back in February 2010. Then a day later two friends said they had seen a BBC report about CCSVI which was very exciting. I looked online at the BBC Iplayer and yes, the report was fantastic. Finally someone was looking at MS in a different way, so I watched it three times and became determined to find out more.
The wife of an Italian cardiac surgeon, Paolo Zimboni, had been diagnosed with MS and so he researched it and discovered that she had squashed jugular veins. This means that the blood flowing away from the brain was not flowing sufficiently, causing a backlog of blood. Some was forced across the blood/brain barrier. The blood is unable to get away from the brain and leaves behind bad nutrients (rubbish), which causes inflammations that can then lead to nerve problems in the brain resulting in MS symptoms.
I have been experiencing MS problems for 30 years and in all that time the "MS world" firmly believed that it was a neurological disease. After going on the CCSVI site I was shocked to discover that a Dr had been proclaiming about MS being a vascular disease for 30years, but sadly he was rebuked. If his findings are now really being proved correct, my disease would not have been so far advanced.
This is changing the medical world and the old fossils don't like it!! CCSVI treatment has now been banned in Italy where it was discovered. Research was being completed in many countries across the world but operations have been halted. It is all very political and I believe the pharmaceutical companies are putting pressure on. If Dr Zimboni is proven correct they will loose multi millions in medication and treatments. Not to forget the effects on the neurological researchers who would inevitably loose their funding and now our MS society will not do any more until further research has been done. There are cases where improvements have been shown.
The way they find out if you have a squashed jugular vein is by doing a Doppler scan which is a non evasive procedure and it is like having a baby scan check up but on your neck.
A private centre has now been set up and opened in Glasgow specifically for this diagnosis. Another is being set up in London but not open yet. Staff are being trained by Dr Zimboni to discover the narrowed veins.
The treatment is to extend the neck veins to allow the blood to flow freely. There are two types of stents: a metal one and a plastic one. The plastic stent is the preferable one at the moment as the metal stent is left in the jugular veins and so is a foreign body with all the problems that may arise from a foreign body.
But on a positive note we seem to finally be moving forward and getting somewhere.
Update
I heard a radio report about MS back in February 2010. Then a day later two friends said they had seen a BBC report about CCSVI which was very exciting. I looked online at the BBC Iplayer and yes, the report was fantastic. Finally someone was looking at MS in a different way, so I watched it three times and became determined to find out more.
The wife of an Italian cardiac surgeon, Paolo Zimboni, had been diagnosed with MS and so he researched it and discovered that she had squashed jugular veins. This means that the blood flowing away from the brain was not flowing sufficiently, causing a backlog of blood. Some was forced across the blood/brain barrier. The blood is unable to get away from the brain and leaves behind bad nutrients (rubbish), which causes inflammations that can then lead to nerve problems in the brain resulting in MS symptoms.
I have been experiencing MS problems for 30 years and in all that time the "MS world" firmly believed that it was a neurological disease. After going on the CCSVI site I was shocked to discover that a Dr had been proclaiming about MS being a vascular disease for 30years, but sadly he was rebuked. If his findings are now really being proved correct, my disease would not have been so far advanced.
This is changing the medical world and the old fossils don't like it!! CCSVI treatment has now been banned in Italy where it was discovered. Research was being completed in many countries across the world but operations have been halted. It is all very political and I believe the pharmaceutical companies are putting pressure on. If Dr Zimboni is proven correct they will loose multi millions in medication and treatments. Not to forget the effects on the neurological researchers who would inevitably loose their funding and now our MS society will not do any more until further research has been done. There are cases where improvements have been shown.
The way they find out if you have a squashed jugular vein is by doing a Doppler scan which is a non evasive procedure and it is like having a baby scan check up but on your neck.
A private centre has now been set up and opened in Glasgow specifically for this diagnosis. Another is being set up in London but not open yet. Staff are being trained by Dr Zimboni to discover the narrowed veins.
The treatment is to extend the neck veins to allow the blood to flow freely. There are two types of stents: a metal one and a plastic one. The plastic stent is the preferable one at the moment as the metal stent is left in the jugular veins and so is a foreign body with all the problems that may arise from a foreign body.
But on a positive note we seem to finally be moving forward and getting somewhere.
Update
August 2010
I had a scan which shows that my jugular veins are very badly squashed and I have been told that I can have a procedure as soon as a clinic is set up in the UK. A clinic is being opened in Edinburgh and will open at the end of October. This will be the only clinic available in Britain. I do not yet have a date but I am waiting, not too patiently!
March 2011
The Edinburgh clinic has proved problematical. It provides no medical back up or nursing care after the operation. The procedure takes an estimated eight days and it doesn't provide nursing accommodation, leaving patients to find a near by hotel to stay close to the clinic. The theatre within the clinic has no wheelchair access and you have to be physically able to climb the five steps to enter the theatre room which is impossible for me to do.
I have looked into a Polish hospital in Warsaw that provides the same procedure. It is a very professional medical clinic that's linked to a hospital and translates perfect English. They have said that I am too physically disabled to have the operation due to the fact that I am of high risk. I run the risk of suffering from thrombosis, pulmonary embolism and stroke. They have focused on the fact that I am (a vegetable) severally disabled. I am trying to convince them that I do a lot of passive exercise (being moved by people/things) It is now March the 5th and I am waiting for a positive response.
It is is now March 9th 2011, and I have had a positive response from Poland, They are aware that I do lots of exercises, have a standing wheelchair and use my exercise bike everyday. They have asked for some more medical information and will then make a final decision. Hopefully this won't take to long as my patience has been stretched to breaking point.
October 2011
It is now October and I realise that I must update this Blog.
I have researched CCSVI and now see that it is too dangerous for someone as disabled as me. That in no way means it is a 'bad thing', just that it's not for me yet.
I have looked into a Polish hospital in Warsaw that provides the same procedure. It is a very professional medical clinic that's linked to a hospital and translates perfect English. They have said that I am too physically disabled to have the operation due to the fact that I am of high risk. I run the risk of suffering from thrombosis, pulmonary embolism and stroke. They have focused on the fact that I am (a vegetable) severally disabled. I am trying to convince them that I do a lot of passive exercise (being moved by people/things) It is now March the 5th and I am waiting for a positive response.
It is is now March 9th 2011, and I have had a positive response from Poland, They are aware that I do lots of exercises, have a standing wheelchair and use my exercise bike everyday. They have asked for some more medical information and will then make a final decision. Hopefully this won't take to long as my patience has been stretched to breaking point.
October 2011
It is now October and I realise that I must update this Blog.
I have researched CCSVI and now see that it is too dangerous for someone as disabled as me. That in no way means it is a 'bad thing', just that it's not for me yet.
Sarah
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