Sotiris, i strongly suggest you check this out mate, if have not already.
http://www.bnac.net/wp-content/uploads/ ... 4-2010.pdf
This is HUGE and i hope whatever we learn from now on about CCSVI is gonna be between similar lines...
Keep us posted friend. Like you always do.
CCSVI in Greece
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costumenastional
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gibbledygook
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This is absolutely great news! It has brought tears to my eyes! Unless they were complete charlatans, they must be seeing a strong pattern of CCSVI in these MS patients. Can the rest of the world duplicate their radiology skills? In time...
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,
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costumenastional
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There is no chance in hell they are charlatans since we are talking about one of the most prestigious universities in the whole world. I think we all know that since i never run on a non clever person while browsing the ccsvi forum.
From now on, the question following a negative ccsvi diagnosis will be one and only:
I dont have ms, so, what's wrong with me?
The key will be to be ABSOLUTELY sure there is no stenosis.
God... let them find my veins magled soon... Let them find ccsvi in ALL of us...
From now on, the question following a negative ccsvi diagnosis will be one and only:
I dont have ms, so, what's wrong with me?
The key will be to be ABSOLUTELY sure there is no stenosis.
God... let them find my veins magled soon... Let them find ccsvi in ALL of us...
Hi all.
I have received a phone call by one radiology professor of the local university hospital. He wanted to have the CDs of my procedure and (!!!) travel to Italy for training. What a shame! They were the same people treating me like a hypochondriac alien for more than a year, now...
The very good news is that the word is spreading out. If we manage to bring CCSVI scanning and procedure to a public university hospital, the road will be open for massive diagnosis and treatment by the greek Public Health System, meaning very safe operations, 100 % free of charge for all greeks and a very small fee (if any) for all EU citizens.
I only hope my legs allow me to spread the word out the following weeks.
sou
I have received a phone call by one radiology professor of the local university hospital. He wanted to have the CDs of my procedure and (!!!) travel to Italy for training. What a shame! They were the same people treating me like a hypochondriac alien for more than a year, now...
The very good news is that the word is spreading out. If we manage to bring CCSVI scanning and procedure to a public university hospital, the road will be open for massive diagnosis and treatment by the greek Public Health System, meaning very safe operations, 100 % free of charge for all greeks and a very small fee (if any) for all EU citizens.
I only hope my legs allow me to spread the word out the following weeks.
sou
That sounds like quite a change in attitude!!! I like that things are moving in the right direction.sou wrote:I have received a phone call by one radiology professor of the local university hospital. He wanted to have the CDs of my procedure and (!!!) travel to Italy for training. What a shame! They were the same people treating me like a hypochondriac alien for more than a year, now...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Hi all.
I think it is high time to get organized so that we may someday lobby politicians to recognize CCSVI as a condition. I have spoken to several friends of mine, all patients with MS, and I have realized that many of them use computers but do not speak English.
While I am not a fan of social networking, I have created a facebook group so that we can discuss everything in greek and overcome the language obstacle. Information should be freely available to everybody.
Please, join me in spreading the word and making CCSVI diagnosis and treatment routinely available at greek public hospitals.
The facebook group is called:
ΧΕΝΦΑ - Το νέο πρόσωπο της Πολλαπλής Σκλήρυνσης
I am not familiar with social networking and any help is very appreciated.
sou
I think it is high time to get organized so that we may someday lobby politicians to recognize CCSVI as a condition. I have spoken to several friends of mine, all patients with MS, and I have realized that many of them use computers but do not speak English.
While I am not a fan of social networking, I have created a facebook group so that we can discuss everything in greek and overcome the language obstacle. Information should be freely available to everybody.
Please, join me in spreading the word and making CCSVI diagnosis and treatment routinely available at greek public hospitals.
The facebook group is called:
ΧΕΝΦΑ - Το νέο πρόσωπο της Πολλαπλής Σκλήρυνσης
I am not familiar with social networking and any help is very appreciated.
sou
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costumenastional
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What i really love about you is that every time you post, you have something huge to say. It gets better and better...
Sou, even though i d hate someone who called me a hypocondriac in the past for false reasons, it s crucial to spread the word anyway we can. Even by contacting idiots that have no intention to look further into ccsvi whatsoever. When the day that they will find out how wrong they were comes, they will be among the first to start searching here and there, trying to be part off the new status quo one way or another.
And it will be fun just to watch them running and searching around like ants..
On the other hand, we should keep in mind of people getting negative ccsvi results, something that makes me more than scared. What's the deal? Leetz, posted today about her results and i can really relate with her frustration and fear.
Anyway, i for one will make a facebook account asap so i can be a part of your page.
I really hope that your legs will help Sou.
You are a pioneer in Greece on that matter and i find it extremely difficult for someone else to get the attention you can get friend.
Congratulations.
Sou, even though i d hate someone who called me a hypocondriac in the past for false reasons, it s crucial to spread the word anyway we can. Even by contacting idiots that have no intention to look further into ccsvi whatsoever. When the day that they will find out how wrong they were comes, they will be among the first to start searching here and there, trying to be part off the new status quo one way or another.
And it will be fun just to watch them running and searching around like ants..
On the other hand, we should keep in mind of people getting negative ccsvi results, something that makes me more than scared. What's the deal? Leetz, posted today about her results and i can really relate with her frustration and fear.
Anyway, i for one will make a facebook account asap so i can be a part of your page.
I really hope that your legs will help Sou.
You are a pioneer in Greece on that matter and i find it extremely difficult for someone else to get the attention you can get friend.
Congratulations.
Hi Sou,
as you might know Vonda is busy building an international CCSVI site.
I took the liberty to start a Greek page and placed your facebook group in it. Have a look:
http://ccsvivictory.club.officelive.com/Greece.aspx
Obviously I have no knowledge of the Greek language, if any one can help me out by supplying translations of english phrases it would be much appreciated.
Also, anything to do with Greek CCSVI - forums, websites, blogs, youtube - please provide me with links, either in this thread or by pm. I do not need to understand it in order to place it. Just tell me what to copy & paste
as you might know Vonda is busy building an international CCSVI site.
I took the liberty to start a Greek page and placed your facebook group in it. Have a look:
http://ccsvivictory.club.officelive.com/Greece.aspx
Obviously I have no knowledge of the Greek language, if any one can help me out by supplying translations of english phrases it would be much appreciated.
Also, anything to do with Greek CCSVI - forums, websites, blogs, youtube - please provide me with links, either in this thread or by pm. I do not need to understand it in order to place it. Just tell me what to copy & paste
dx 2002,RRMS, suspected begin of MS 1978 (age 10)
Hi all.
I have just returned from Athens. I had the monthly followup today, after ending a cycle of 30 tinzaparin injections (Innohep).
The results were good. The left IJV is neither atrophic, nor blocked any more. It has no difference in doppler than the normal right IJV. It used not to flow at all when upright.
The vertebral veins flow normally, a sign that the azygos vein is still open. My next meeting is scheduled for early September to undergo yet another DSA scan. Until then, I have to take clopidogrel (Plavix) 75mg per day.
My doctor does not feel ready for massively performing the procedures. I shall inform you when he is ready.
Thank you for your support all this time.
sou
I have just returned from Athens. I had the monthly followup today, after ending a cycle of 30 tinzaparin injections (Innohep).
The results were good. The left IJV is neither atrophic, nor blocked any more. It has no difference in doppler than the normal right IJV. It used not to flow at all when upright.
The vertebral veins flow normally, a sign that the azygos vein is still open. My next meeting is scheduled for early September to undergo yet another DSA scan. Until then, I have to take clopidogrel (Plavix) 75mg per day.
My doctor does not feel ready for massively performing the procedures. I shall inform you when he is ready.
Thank you for your support all this time.
sou
pCakes
ccsvi in greece
my son was diagnosed with ms in greece october 2009 and it has been
imposible to find avascular surgeon to accept Dr Zamboni theory in Greece. As far as the neurologists in Greece they are all telling us that
it is to early to accept Dr Zamboni theory.
I have emailed all the doctors on the ccsvi list in Europe and in the
USA in order to schedule an appointment for ccvi testing and we seem
to be on along list. He is getting desperate,and Iam very worried please
post the vascular surgeon name in Greece.
imposible to find avascular surgeon to accept Dr Zamboni theory in Greece. As far as the neurologists in Greece they are all telling us that
it is to early to accept Dr Zamboni theory.
I have emailed all the doctors on the ccsvi list in Europe and in the
USA in order to schedule an appointment for ccvi testing and we seem
to be on along list. He is getting desperate,and Iam very worried please
post the vascular surgeon name in Greece.
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costumenastional
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Miranda, i am Greek too. I am 34 and i was diagnosed in late 2008. Anyway, Sou cant say the doctors name since he is not allowed for reasons he has already explained and should be respected.
Please, be patient for two reasons:
CCSVI is not proven effective for all ms patients YET, and there are places outside of Greece if you are wiling to pay and travel abroad.
Take sometime to gather info in here and take it from there.
I am where your son is so i feel free to say that there is hope and a couple of months wont make a difference. Plus, you ll hear from Bulgaria soon i suspect.
No need to panic. Just pray for this to work for your son and the rest of us. For it will be available soon, one way or another.
http://www.facebook.com/topic.php?uid=4 ... 2148490480
this is Sou's facebook page concerning CCSVI. Maybe you should try contacting him there.
Please, be patient for two reasons:
CCSVI is not proven effective for all ms patients YET, and there are places outside of Greece if you are wiling to pay and travel abroad.
Take sometime to gather info in here and take it from there.
I am where your son is so i feel free to say that there is hope and a couple of months wont make a difference. Plus, you ll hear from Bulgaria soon i suspect.
No need to panic. Just pray for this to work for your son and the rest of us. For it will be available soon, one way or another.
http://www.facebook.com/topic.php?uid=4 ... 2148490480
this is Sou's facebook page concerning CCSVI. Maybe you should try contacting him there.
Hi Miranda.
I would have no problem posting his name and his phone. I simply can't do it upon his own request. He is not ready to perform more CCSVI surgeries because he does not consider himself adequately familiar with the whole process. Even if you contacted him, he would be negative for the time being.
How old is your son? MS is a chronic process that takes many years to develop. For the time being, your son should treat his body as if he suffered from any other vascular problem. Vitamins, light exercise, healthy diet and, most important than all, quit smoking if he smokes. Please, consult your doctor about what a patient with a chronic vascular problem should do.
sou
I would have no problem posting his name and his phone. I simply can't do it upon his own request. He is not ready to perform more CCSVI surgeries because he does not consider himself adequately familiar with the whole process. Even if you contacted him, he would be negative for the time being.
How old is your son? MS is a chronic process that takes many years to develop. For the time being, your son should treat his body as if he suffered from any other vascular problem. Vitamins, light exercise, healthy diet and, most important than all, quit smoking if he smokes. Please, consult your doctor about what a patient with a chronic vascular problem should do.
sou