DrSclafani answers some questions
- LadyGazelle
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- Joined: Sat Jul 03, 2010 2:00 pm
- Location: Rochester, New York
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My Dr. Eric S. from RGH will be given your info at my MRV on Wednesday.
I think I am the FIRST in Rochester that has started this ball rolling. I will research a few other doctors and find out if the Multiple Sclerosis Clinic at the University of Rochester has heard about CCSVI. That is where Dr. Goodman's office is who was one of the original researchers on getting Ampyra approved in March of this year. However, I'm sure that he would like to shut me up because he wants Ampyra to keep on helping MSers with "their walking speed" ONLY. lol
I'm not expecting much from my doctor/IR contacts. That may be their choice at THIS time; but that could change very quickly. (wink wink)
I have printed and cut "tag strips" and distribute to anyone who will listen to my excitement. I ask first if they know of anyone who has m.s. - and then I tell them to give them the tag. They are printed on both sides of a 3/4-inch x 4-1/4 inch piece of heavy bright green paper and I use 3/4-inch round green circles to stick them up wherever I decide would get attention, too.
side 1:
NEW LIFE for Multiple Sclerosis Patients
Cure or Help? http://tinyurl.com/y9c2uwy
side 2:
www.PatientsLikeMe.com Receive
CCSVI - "Liberation Treatment"
Let's get the word out! There's power in numbers.
LadyGazelle
I think I am the FIRST in Rochester that has started this ball rolling. I will research a few other doctors and find out if the Multiple Sclerosis Clinic at the University of Rochester has heard about CCSVI. That is where Dr. Goodman's office is who was one of the original researchers on getting Ampyra approved in March of this year. However, I'm sure that he would like to shut me up because he wants Ampyra to keep on helping MSers with "their walking speed" ONLY. lol
I'm not expecting much from my doctor/IR contacts. That may be their choice at THIS time; but that could change very quickly. (wink wink)
I have printed and cut "tag strips" and distribute to anyone who will listen to my excitement. I ask first if they know of anyone who has m.s. - and then I tell them to give them the tag. They are printed on both sides of a 3/4-inch x 4-1/4 inch piece of heavy bright green paper and I use 3/4-inch round green circles to stick them up wherever I decide would get attention, too.
side 1:
NEW LIFE for Multiple Sclerosis Patients
Cure or Help? http://tinyurl.com/y9c2uwy
side 2:
www.PatientsLikeMe.com Receive
CCSVI - "Liberation Treatment"
Let's get the word out! There's power in numbers.
LadyGazelle
- CureOrBust
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- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
Re: Transcranial Doppler and Venogram
I live in Australia, and had intra-cranial US performed in early 2009. There are people who do it, but as you have found, they aren't easy to find. Try hospitals and maybe stroke specialists. What's worse is that I spoke to one location that was learning it, but when I approached them about doing Zamboni's studies, they basically did not see a "market" for the testing; I didn't push it.Opera wrote:I live in Australia and here they can only do extracranial doppler US.
Any chance of issuing an early release to my doc? I go in for surg...um..I mean the "procedure" on July 27th.DrSclafani wrote:please tell your IR that i have written a primer in ENDOVASCULAR TODAY. It should come out next month.
Please get someone to video-tape this. Its fairly easy to convert to a video file and place on the net (that's an offer if you need the help) so everyone can see it around the world including those that can not attend. There are some good names in your list.DrSclafani wrote:He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY. I will be joined by Dr. Siskin of Albany Medical College, Dr. Sinan, leader of the Kuwaiti trial, Dr. Haacke and Dr. Salvi, of Ferrara fame. We will discuss CCSVI and focus on techniques with colleagues from mostly the East Coast, but also from South American and perhaps Europe.
This "cutting balloon" really needs a less intrusive / violent name. I think my doc is a fan as well.DrSclafani wrote:My experiences with IVUS showed me that many of the narrowings are really valvular problems. These particular problems seemed to dilate well after cutting balloons. The fused valve leaflets just tear open. other valve problems just do not go away with angioplasty
As I said above, I have a date for treatment with a local Dr I put you in contact with a few months ago. I know you are trying to build your "atlas" of images, I pm'd you regarding the possibility of getting my doc to make any specific images while I am on the table, for your needs; let me know.
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I TOTALLY agree with CeCe! Just so you know, Dr S - breaking up is hard to do (wish I could do a musical note) and I''m still grieving over the IRB decision. BUT I suspect I will someday meet you in person and I continue to learn from you.Cece wrote:There is also the important work you do here, educating and encouraging.drsclafani wrote:Thank you for sharing with me. I am very sorry that i am stymied. Perhaps it is my calling to write primers and put on symposia
But I hope for more for you as well.
balloon types
color=indigo]quote - Dr Sclafani:
i would use a high pressure balloon. if you had a sausage appearance with a high pressure balloon, a low pressure balloon is not going to do much.
Bars are places i go after work.....i think in atmospheres. moderate balloons go up to about 8 atm. high pressure balloons can go up to 40 atm or more.
if you are narrowing at the stent, ask your doctor is you should be on anticoagulation [color]
Thanks for your help Dr. Sclafani . Yes I'll be going to '6 bars' soon if I don't get this sorted out but I'll need to go to an ATM for money first!
Pauline
i would use a high pressure balloon. if you had a sausage appearance with a high pressure balloon, a low pressure balloon is not going to do much.
Bars are places i go after work.....i think in atmospheres. moderate balloons go up to about 8 atm. high pressure balloons can go up to 40 atm or more.
if you are narrowing at the stent, ask your doctor is you should be on anticoagulation [color]
Thanks for your help Dr. Sclafani . Yes I'll be going to '6 bars' soon if I don't get this sorted out but I'll need to go to an ATM for money first!
Pauline
- welshman
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- Location: Kelowna B.C. Canada
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Dr S, altho sort of disappointed that you aren't going "rogue" yet, I am still very pleased that you are continuing with your input and advice to all the questions put up here. I now actually have a couple of things to ask about:
a) with the primer you've mentioned coming out in "Endovascular Today" and the Symposium you're holding July 26, might these two contribute to your IRB revisiting their desicion ?
and b) we got an e-mail from your office (?) re getting on your waiting list which included a "spread sheet" of questions: unfortunately my computer does not have the capability of filling this spread sheet out !!! Can I just provide the info as required without using the spread sheet ????
As I said in my earlier post, I really want my wife checked out, so I hope your can say "YES" to both my questions. Thanks.
a) with the primer you've mentioned coming out in "Endovascular Today" and the Symposium you're holding July 26, might these two contribute to your IRB revisiting their desicion ?
and b) we got an e-mail from your office (?) re getting on your waiting list which included a "spread sheet" of questions: unfortunately my computer does not have the capability of filling this spread sheet out !!! Can I just provide the info as required without using the spread sheet ????
As I said in my earlier post, I really want my wife checked out, so I hope your can say "YES" to both my questions. Thanks.
- drsclafani
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i do not think they will revisit their decision. I am writing a new proposal that will undergo fresh assessment. But i will invite them to the symposiumwelshman wrote:Dr S, altho sort of disappointed that you aren't going "rogue" yet, I am still very pleased that you are continuing with your input and advice to all the questions put up here. I now actually have a couple of things to ask about:
a) with the primer you've mentioned coming out in "Endovascular Today" and the Symposium you're holding July 26, might these two contribute to your IRB revisiting their desicion ?
and b) we got an e-mail from your office (?) re getting on your waiting list which included a "spread sheet" of questions: unfortunately my computer does not have the capability of filling this spread sheet out !!! Can I just provide the info as required without using the spread sheet ????
As I said in my earlier post, I really want my wife checked out, so I hope your can say "YES" to both my questions. Thanks.
please email holly and she can talk on the phone and help answer the survey
- fogdweller
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- LadyGazelle
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- Joined: Sat Jul 03, 2010 2:00 pm
- Location: Rochester, New York
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I just figured out how to post ONE of my doppler pictures from the CD they gave me showing the possible inverted valve in my jugular (or an "artifact"). I am very appreciative of your time, and it's not necessary for you to reply.
I'm just glad I figured out how to do it!
Thank you for the information you provided for me, and I will be faxing it to my IR so he will have it before I see him tomorrow for the first time. I hope he doesn't think of me as a PITA
I'm just glad I figured out how to do it!
Thank you for the information you provided for me, and I will be faxing it to my IR so he will have it before I see him tomorrow for the first time. I hope he doesn't think of me as a PITA
This might be a prime opportunity to get on the good doctor's waiting list, here is the email:
ccsviliberation@gmail.com
Contact person is Holly Barr
She may or may not ask for your mother's maiden name, do not joke about it being tattooed on the inside of your jugulars, she not seem to find that as amusing as we did!
ccsviliberation@gmail.com
Contact person is Holly Barr
She may or may not ask for your mother's maiden name, do not joke about it being tattooed on the inside of your jugulars, she not seem to find that as amusing as we did!
"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 Doc! it has been 10 weeks since my Half liberation. I have lost pretty much all the benefits gain except for my legs stiffness. Never once since April 25 my legs bucckled after sitting or walking! I walk normally. which is great but the fatigue, pain, brain fog, etc never went.
I had also lost the motivation to continue battleling to get treated here in Canada and get my Azygos checked.
Your symposium and article announcements gave me back the courage to carry on. Thank you for not given up on us!
Do you know if Dr Kostecki from Tychy, Poland will be there? I have to decide if I should go back...
I had also lost the motivation to continue battleling to get treated here in Canada and get my Azygos checked.
Your symposium and article announcements gave me back the courage to carry on. Thank you for not given up on us!
Do you know if Dr Kostecki from Tychy, Poland will be there? I have to decide if I should go back...
- Rompers
- Getting to Know You...
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- Location: SW Ontario, Canada
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Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?
And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".
Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!
Rhonda
And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".
Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!
Rhonda
Procedure by DrS 5/3/11 SI
- LadyGazelle
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- Joined: Sat Jul 03, 2010 2:00 pm
- Location: Rochester, New York
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I just wonder how many IR's would take advantage of this opportunity. We give them the protocols and it's still difficult to get them to take action.
The IR has to pretty darn sure the IRB will approve this. Follow the money and see who accepts the offer to learn for free. It's not what they know, it's who will let them use their knowledge.
I don't WANT to be negative here - but someone has to be PRO-CCSVI for them to learn anything more than what their peers are telling them at this time.
I think there should be MONTHLY meetings where every IR will have an opportunity to be educated from the best as soon as possible... which most likely won't be urgent for THEM like it is for US.
LadyGazelle
The IR has to pretty darn sure the IRB will approve this. Follow the money and see who accepts the offer to learn for free. It's not what they know, it's who will let them use their knowledge.
I don't WANT to be negative here - but someone has to be PRO-CCSVI for them to learn anything more than what their peers are telling them at this time.
I think there should be MONTHLY meetings where every IR will have an opportunity to be educated from the best as soon as possible... which most likely won't be urgent for THEM like it is for US.
LadyGazelle
Dr Sclafani.He is welcome to join us in Brooklyn on July 26, when we will have a symposium on the techniques of liberation at SUNY. I will be joined by Dr. Siskin of Albany Medical College, Dr. Sinan, leader of the Kuwaiti trial, Dr. Haacke and Dr. Salvi, of Ferrara fame. We will discuss CCSVI and focus on techniques with colleagues from mostly the East Coast, but also from South American and perhaps Europe.
South america? Could you be more specific?? I am from Argentina.
Thanks!
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