Hi all.
After finding some weak indication that I have a problem in my left IJV, I have been looking for a willing vascular surgeons in Greece, where I live. I have been treated as if I were an alien, I was called a hypochondriac and saw the research being disregarded because Dr Zamboni has a funny name! (Zamboni is a word meaning "ham" and is used for insulting overweight people) To my astonishment, the solution was a phone call away. A good friend of mine has a very close relation to an excellent vascular surgeon, who is just under 40 years old.
After extensively studying the papers and his textbooks, he concluded that the angioplastic procedure is very safe, technically easy and he has all the means to perform it. He has sent an email to Dr Zamboni, too. I wanted to ask if it is possible for him to contact Dr Haacke if needed to ask some technical question. AFAIK, he is in the US. Do any restrictions apply to him?
I will keep you posted about how it will go and make his contact details public, as soon as he accepts routinely treating CCSVI patients.
sou(r)
CCSVI in Greece
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cheerleader
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Re: CCSVI in Greece
Thank you, sou(r) for making me laugh! This is truly one of the funniest things I've ever read on these boards....that Greeks call fat people zambonis....akkkkkk....I'm sorry. It's the combo of this information, and the fact it's you (sou) writing it that makes it so damn hysterical. OK...wiping tears from eyes...sou wrote:
...research being disregarded because Dr Zamboni has a funny name! (Zamboni is a word meaning "ham" and is used for insulting overweight people)
Have your friend e-mail him thru his website. Dr. Haacke splits his time between Detroit, MI (in US) and Hamilton, Canada, and he also travels a great deal. http://www.ms-mri.com/contactus.phpTo my astonishment, the solution was a phone call away. A good friend of mine has a very close relation to an excellent vascular surgeon, who is just under 40 years old.
I wanted to ask if it is possible for him to contact Dr Haacke if needed to ask some technical question. AFAIK, he is in the US. Do any restrictions apply to him?
But seriously...you know I will be so happy to see you tested and treated, sou. You've had issues with this vein since your childhood, and I hope this new connection provides some relief for you-
thanks again for the laugh and sharing your good news-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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CureOrBust
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Σου?! ΣΟΥ?! Σου γράφω με το θάρρος οτι σε ξέρω καλά από πάλια με άλλο avatar. Εαν κάνω κάποιο λάθος και είσαι άλλος άνθρωπος μην με παρεξηγησεις!!
ZAMBONI!!! HA HA. I am going to start shouting that to all the insensitive onlookers that stare at me as I walk by with my rollator. ''Hey! What are you looking at...you ZAMBONI!! '' '' Seen enough?! You ZAMBONI!!'' ''Wanna picture? You ZAMBONI!'' Gee, I might just say it across the board cause it sounds so good anyway. ZAMBONI I'm killing myself laughing here....
Wellll Sou, I just went to my local neuro cause I need my annual MRI's for the Tysabri protocol and I asked him his opinion on CCSVI. I let him see the Zamboni paper and you know what he said?! ''Οχι ρε πουστη μου!! Που το βρήκες αυτο!! Είναι απίστευτο! Το βρήκε σε 100% στα 100% απο τους ασθενείς?'' Translation - In short he thought it was VERY interesting and promised to look into it for me.
He thinks that all the test procedures can be done although some only in Athens with a Vascular Specialist, however, he says I need some kind of protocol to follow.....??
I didn't want to push him on it since my goal was to just get the ball rolling and getting a neuro at least interested is enough in one visit!
I shall be following your progress with bated breath.....μυξιάρι!
ZAMBONI!!! HA HA. I am going to start shouting that to all the insensitive onlookers that stare at me as I walk by with my rollator. ''Hey! What are you looking at...you ZAMBONI!! '' '' Seen enough?! You ZAMBONI!!'' ''Wanna picture? You ZAMBONI!'' Gee, I might just say it across the board cause it sounds so good anyway. ZAMBONI I'm killing myself laughing here....
Wellll Sou, I just went to my local neuro cause I need my annual MRI's for the Tysabri protocol and I asked him his opinion on CCSVI. I let him see the Zamboni paper and you know what he said?! ''Οχι ρε πουστη μου!! Που το βρήκες αυτο!! Είναι απίστευτο! Το βρήκε σε 100% στα 100% απο τους ασθενείς?'' Translation - In short he thought it was VERY interesting and promised to look into it for me.
He thinks that all the test procedures can be done although some only in Athens with a Vascular Specialist, however, he says I need some kind of protocol to follow.....??
I didn't want to push him on it since my goal was to just get the ball rolling and getting a neuro at least interested is enough in one visit!
I shall be following your progress with bated breath.....μυξιάρι!
Hi Annette!
It's good to see you again!!!
Actually, the "greek" word for insulting is zambon, without the 'i' and it must be of french origin.
But "Zamboni" translates like "the man who is a tin of ham".
I keep my fingers crossed that this won't end up as a false negative. My left jug was a real mess at the doppler.
I spoke with the doctor again today, and his words were very similar with your neurologist's. He had a comment about other doctors stating that "It's ok, blood can return to the heart through other veins!". He said: "Μα καλά, είναι τελείως μαλάκες; Νύχτα το πήραν το πτυχίο; Από πού έβγαλαν αυτό το συμπέρασμα;", in other words, "How can they be so sure about that?"
About the protocol. Dr Haacke had the kindness to publish instructions for MR scanner operators. I shall email them to you.
XXX
sou(r)
It's good to see you again!!!
Actually, the "greek" word for insulting is zambon, without the 'i' and it must be of french origin.
But "Zamboni" translates like "the man who is a tin of ham".I keep my fingers crossed that this won't end up as a false negative. My left jug was a real mess at the doppler.
I spoke with the doctor again today, and his words were very similar with your neurologist's. He had a comment about other doctors stating that "It's ok, blood can return to the heart through other veins!". He said: "Μα καλά, είναι τελείως μαλάκες; Νύχτα το πήραν το πτυχίο; Από πού έβγαλαν αυτό το συμπέρασμα;", in other words, "How can they be so sure about that?"
About the protocol. Dr Haacke had the kindness to publish instructions for MR scanner operators. I shall email them to you.
XXX
sou(r)
The man who is a tin of ham. Gee. Does sounds pretty bad, doesn't it? Also, the word 'ham' has so many negative connotations.sou wrote:Hi Annette!
But "Zamboni" translates like "the man who is a tin of ham".
I too am keeping everything crossed for you that this works and if it does then you must return to your nasty neuro and say "Hey you! I'm cured!" (Do you know cured ham?) Your silly ideas have been hammered. You were too boar-ed to even read Zamboni's work. Man of no hambition."
That should get him squealing like a pig and if not I can always accompany you for moral support and bash him with my hambag.
Gee, my brain's gone bezerk with pig references. Not good for someone as synaptically screwed as myself.
Thanks. xxxsou wrote: About the protocol. Dr Haacke had the kindness to publish instructions for MR scanner operators. I shall email them to you.
XXX
sou(r)
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MarkW
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CCSVI centre in Greece ?
Hello sou(r),
Congratulations on finding a vascular surgeon willing to do angioplasty on your CCSVI. I am sure he will get lots of pwMS flying to Greece to have the operation, as private patients, once you get his agreement. For us northern Europeans springtime is a great time to visit Greece.
Please keep us posted.
MarkW
Congratulations on finding a vascular surgeon willing to do angioplasty on your CCSVI. I am sure he will get lots of pwMS flying to Greece to have the operation, as private patients, once you get his agreement. For us northern Europeans springtime is a great time to visit Greece.
Please keep us posted.
MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
Sou
That is very encouraging news. I’m trying to do the same thing as you have done here in my region. You are at least two steps ahead of me and this is just what I needed to hear (read) to keep going.
I hope you will be able to proceed with the vasc surgeon as planned and that angio will come thru for you soon.
Any update from you will be valuable
JohnAm
That is very encouraging news. I’m trying to do the same thing as you have done here in my region. You are at least two steps ahead of me and this is just what I needed to hear (read) to keep going.
I hope you will be able to proceed with the vasc surgeon as planned and that angio will come thru for you soon.
Any update from you will be valuable
JohnAm
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Badger
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Contact details?
Hi, does anyone have any contact details for Dr/Dr's in Greece.
Hi all.
I got a call from my vasc. surgeon today.
He was performing an MRA to a patient of his, neck and chest. Not for CCSVI but some other unrelated vascular disease of the arteries. He had the brilliant idea of taking "some more pictures", according to the Haacke's protocol, just to see if he is satisfied with the results his MR machine could produce. He was not, but I was happy to hear that he realized that we need the highest possible level of detail.
He is performing a CT venogram tomorrow and he will take a few more pictures to see if an acceptable 3D reconstruction of the veins is possible. If not, we are going to perform DSA (http://en.wikipedia.org/wiki/Digital_su ... ngiography) which is invasive but extremely accurate and displays the flow in real time.
I keep my fingers crossed. I shall post more news as soon as I have any.
sou
I got a call from my vasc. surgeon today.
He was performing an MRA to a patient of his, neck and chest. Not for CCSVI but some other unrelated vascular disease of the arteries. He had the brilliant idea of taking "some more pictures", according to the Haacke's protocol, just to see if he is satisfied with the results his MR machine could produce. He was not, but I was happy to hear that he realized that we need the highest possible level of detail.
He is performing a CT venogram tomorrow and he will take a few more pictures to see if an acceptable 3D reconstruction of the veins is possible. If not, we are going to perform DSA (http://en.wikipedia.org/wiki/Digital_su ... ngiography) which is invasive but extremely accurate and displays the flow in real time.
I keep my fingers crossed. I shall post more news as soon as I have any.
sou
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costumenastional
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Hi all.
I have just talked with my vascular surgeon. I am leaving for Athens on Wednesday. I hope that we will find some treatable venous malformation and perform the first liberation procedure here.
Needless to say that I have never ever felt as nervous in my life as I feel right now. Millions of "what if"'s are crossing my mind.
I have found no doppler detectable flow in the left IJV when upright and it took about 20 seconds for it to reopen when lying down again. The right IJV was wider, too.
Here is the plan:
The surgeon suggested that a very accurate method of detecting even the tiniest malformation is DSA. (Digital Subtraction Angiography) It is invasive, very similar to what Zamboni used. The chances of finding something are high and no further catheterization will be required should a balloon has to be inserted.
Please, I would be grateful if I were present in some corner of your prayers, because I doubt that mine "work"...
I will keep you posted and I will politely ask the doctor to take on the procedure and perform it to anybody interested. The cost will be around 7000 Euros, but I am not sure about that, yet.
Happy liberation! Καλή λευτεριά!!!
The extremely nervous,
sou
I have just talked with my vascular surgeon. I am leaving for Athens on Wednesday. I hope that we will find some treatable venous malformation and perform the first liberation procedure here.
Needless to say that I have never ever felt as nervous in my life as I feel right now. Millions of "what if"'s are crossing my mind.
I have found no doppler detectable flow in the left IJV when upright and it took about 20 seconds for it to reopen when lying down again. The right IJV was wider, too.
Here is the plan:
The surgeon suggested that a very accurate method of detecting even the tiniest malformation is DSA. (Digital Subtraction Angiography) It is invasive, very similar to what Zamboni used. The chances of finding something are high and no further catheterization will be required should a balloon has to be inserted.
Please, I would be grateful if I were present in some corner of your prayers, because I doubt that mine "work"...
I will keep you posted and I will politely ask the doctor to take on the procedure and perform it to anybody interested. The cost will be around 7000 Euros, but I am not sure about that, yet.
Happy liberation! Καλή λευτεριά!!!
The extremely nervous,
sou