Who are the BIG names in CCSVI ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ozarkcanoer » Fri Feb 05, 2010 12:38 pm

MaggieMae,

Dr Mehta looks like a wonderful doctor. I am so glad that Kacey found him !!! Maybe I should start a new list and have an "Original Pioneers" and "New Pioneers" list !!! I need to put my thinking cap on here because Dr James Laredo at Georgetown University should be added also.

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Finding a right doctor

Postby Alexandra » Sat Feb 06, 2010 1:57 pm

Hi all MS sufferers,

I am from Romania but living in Dubai. My diagnosis for MS is not yet fully confirmed, but the disease seems to be installing slowly but surely, as I am just having my second optical neuritis attack. I've seen the article about doctor Zamboni and I would really like to reach him or any other doctor that works with him or considered experienced enough to identify the venous insuficiency and perform the procedure. Also, I would like to be able to make an appointment as soon as possible. Please contact me at lazalexandra@yahoo.com. Thank you everyone. all your comments are really helpfull
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Postby avantitech » Sat Feb 06, 2010 11:52 pm

Alexandra,

you may be able to get tested in Jordan by Dr Al-Omari as per Sharon's posting in the following topic:

http://www.thisisms.com/ftopicp-89726-jordan.html#89726

All the best
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I met a dr Amman Jordan for CCSVI

Postby sous » Mon Feb 08, 2010 2:09 pm

2 weeks ago, I was visiting Amman, Jordan and met Dr. Hazem Habboub.. He does this operation. And his reputation is excellent....
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Postby avantitech » Wed Feb 17, 2010 2:55 am

For Folks who live in the UK or who can travel there...

In another thread another member (Edser) has posted email details for another Interventional Radiologist who is interested in CCSVI and is offering diagnostics and if appropriate baloon angioplasty interventionsin the United Kingdom - Birmingham.

This is his website and contact info:

http://www.drpaulcrowe.com/pages/ccsvi.aspx

http://www.drpaulcrowe.com/pages/locations.aspx

Edser post: http://www.thisisms.com/ftopicp-92250-p ... rowe#92250
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Postby k6ristin » Fri Feb 19, 2010 3:42 pm

Dr. Stanley Krolczyk, University South Florida, Tampa, FL has applied for a grant to study CCSVI and is supportive of the idea.
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Postby avantitech » Tue Mar 02, 2010 5:58 pm

Folks in Melbourne - Australia

For Imaging/Diagnosis via Color Doppler Ultrasound of Internal Jugular and Vertebral veins only (extra-cranial) using Menegatti protocol, (cost AUD300.00 - no medicare refund at this stage) ask GP for a referral to:
Melbourne Radiology Clinic
3-6/100 Victoria parade
east melbourne
Phone 9667-1667
sonographer: Dr Julie Gregg.

http://www.melbourneradiology.com.au/di ... sound.html
N.B.An MRV assessment will be available in mid to late march 2010 at this clinic. No details as yet

In the event of the detection of impaired blood flow or other abnormal findings in the above 45min-1hour ultrasound scan:-
For Endovascular Investigation and possible treatment via Venogram and Percutaneous Transluminal Angioplasty (ballooning only) ask GP for a referral to:
Professor Ken Thomson
Director of Radiology - The Alfred Hospital
55 Commercial Road
Prahran
Phone 9076 2536

For info on costs etc please refer to the following pages:
http://www.alfredhealth.org.au/radiology/
http://www.alfredradiology.org.au/Content.aspx?Page=5

Percutaneous Transluminal Angioplasty Images - Venogram Images for Illustration purposes
http://www.voyager2.com.au/index.php?option=com_content&view=article&id=13&Itemid=13
http://www.voyager2.com.au/index.php?option=com_content&view=category&id=7&Itemid=12
Last edited by avantitech on Fri Mar 19, 2010 12:10 am, edited 2 times in total.
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ccsvi trials in buffalo

Postby johnjoe » Wed Mar 03, 2010 3:12 am

HI,
can anyone tell me if they took part in the ast trail that was done in buffalo?? How did they get on? is a good, reliable clinic? did your results come back positive for ccsvi? do they keep in touch with you after? how much did you pay?
Alot of questions, i know, but i got a phone al last day saying i was excepted for next trial? I am from ireland, a log way to go i know, so hope i'll get somethingfrom it??
Anyone else out there get excepted??
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Postby brianputman125 » Fri Mar 05, 2010 2:58 am

Dear Brian,



Thank You for Your interest in AMEDS.



We will be happy to help You.



This is the general message we send to our patients.

You will find here a lot of useful information.



GENERAL INFORMATION



AMEDS is a new project focusing at providing a variety of advanced medical

services with participation of highly respected and experienced medical

professionals in Poland.



At present we are in the process of final formal arrangements aiming at starting the

CCSVI medical examination and treatment services anytime between April 5th

and April 12th.



Our goal is to offer the highest possible level of medical service provided

at the modern medical facility near Warsaw in Central Poland.



We are working now on developing CCSVI specific detailed medical examination

and treatment procedures as well as requirements, training support staff, getting the

entire CCSVI center organized.



Our doctors, technicians, medical support staff as well as patient service

personnel are selected to provide the highest possible degree of comfort,

convenience, and effectiveness of the treatment for CCSVI patients.



BOOKING AND WAITING LIST



Unfortunately, until all arrangements are finalized, we are not in position

to set up the appointments - this situation should change however within

four to six weeks from now.



Those who express interest in CCSVI examination and treatment now, are

automatically entered into a preliminary waiting list.



Prior to confirming interest in becoming AMEDS patient, all of those who contact

us will receive detailed information concerning the facility, its exact location,

doctor names and their brief biographies, pricing, procedures, and requirements.



The booking of appointment dates would need to be finalized immediately

after we start the Phase I of booking procedure which should be taking place

before end of March.



During that time we will try to set up examination and treatment dates for

all patients who wrote to us on priority basis. Later on we will set-up

dates for people who register on-line.



We are aiming at avoiding long waiting lists as the patients with MS cannot

be expected to wait indefinitely for treatment.



From what we know, waiting list at another CCSVI clinic operating in Poland

is now longer than 12 months.



This fact caused us to think about creating new CCSVI examination and

treatment center – the AMEDS project, whose ambition is to become the best

CCSVI examination and treatment center in Central & Eastern Europe.



I hope You will stay with us for a period of four to six weeks to set up an

appointment for examination and possible treatment. If everything goes well,

we would be in position to book You for examination and treatment anytime in

April – May - June of this year.



SCHEDULE AND PROCEDURES



If You decide to become our patient, we will pick You up from the

airport and drive You directly to selected hotel not too distant from the hospital, so You

won’t have to worry about finding us.



Any family members that wish to be with You during Your stay at the hospital

can also be accommodated in that hotel, so they can stay with You for as

long as needed.



Typical schedule for examination and treatment will be as follows:



DAY 1:

1. Transportation from the airport;

2. General Examination – blood tests, etc.

3. Doppler + MRV Examination;

DAY 2:

4. One day break at the selected hotel not too distant to the AMEDS center;

DAY 3:

5. CCSVI Treatment;

DAY 4:

6. One day at the hospital bed;

DAY 5:

7. Follow-up examination (Doppler);

DAY 6:

8. One day at the selected hotel not too distant to AMEDS center (for non-European patients);

or

9. Transportation to the airport (for European patients).

DAY 7:

10. Transportation to the airport (for non-European patients).



Points 1, 2, 3, 9/10 are standard for every patient.

If the patient is diagnosed with treatable CCSVI, then points 4, 5, 6, 7, 8 will

happen.



Patients can arrive early or depart late and spend a few days before the examination

or a few days after the treatment at the hotel if they prefer to do so.



Upon completion of treatment, we will drive You back to the airport.



PRICING AND PAYMENTS



The final prices are not yet available as we are still in negotiations of certain

key cost elements, but the total cost for examination and treatment (2 stents)

should not exceed 5.000 EUR for European patients.



For non-European patients the total price may be slightly higher due to additional

insurance cost.



Please, keep in mind that the exact pricing is not yet established and the above

figure serves only as a reference point



Payments for services will be completed either by bank wire transfer or by credit card

at the hospital and will be divided between the payment for examinations

and diagnosis and payment for treatment. It is not likely that we will accept cash payments.



If the Doppler and MRI examinations prove negative as far as CCSVI condition is

concerned, we do not proceed with the therapy and the patients pay only for the

examination.



The prices mentioned cover the medical costs and are separate from lodging and

transportation. Yet, once we are ready with booking procedure, our patients will

have a chance to learn about all key cost elements prior to booking the examination

and possible treatment dates.



FURTHER INFORMATION



If You have daily access to email, You will be contacted with information about

the launch of the service and we will make sure that You don’t miss it.



Also, we are expecting to publish the information on bookings in our soon to

be significantly upgraded webpage.



THE THERAPY AND ITS RESULTS



As far as the therapy is concerned it seems (from what specialists like Dr Paolo

Zamboni – the father of CCSVI examination and treatment, are thinking) that with

approximately 55%-65% of all MS patients, the main cause of degenerative neurological

disorder commonly known as MS is caused by substantial or total blockage of jugular or

azygos veins which play an important role in proper circulation of blood within the brain

and spine.



Once this condition is properly diagnosed by Doppler and MRV examination and treated by

widening the blocked veins by inserting stents or inflating them with angioplasty balloons ,

it seems the process of degeneration of nervous system stops or significantly slows down.



However it is important to note that the damage to nervous system that has already

taken place is not being removed or reversed. The degree of improvement of patient general

condition is highly dependent on the level of damage to the nervous system that has already

taken place prior to the treatment. Generally speaking, if the damage is extensive and prolonged,

the results of therapy are less pronounced.



Nevertheless experience shows that upon treatment the quality of life significantly

improves within majority of patients – although the degree of improvement is

not the same for all of them.



It seems that the next step after the CCSVI treatment would be the stem cell therapy

to rebuild the cells damaged by MS – but from what we know now, this type of therapy

is still to be developed in the future.



Please, keep in mind that all of these statements are still based on available data

of limited scope as the CCSVI discovery is still at the early stage of development;

still too few patients have been a subjects of detailed research over the long time period.



Nevertheless I personally know people who suffered from MS, gone through CCSVI

testing and treatment and confirm that substantial part of their MS related

conditions have gone away – significantly improving their quality of life.



For more information concerning the therapy, please watch the following

material: http://www.youtube.com/watch?v=tV14jnVW ... re=related



FOLLOW UP



Following the successful CCSVI treatment, You will be required to take blood thinning

medication on daily basis. Also, we will recommend a follow up visit to AMEDS

within six months after the treatment to check on the condition of veins which were

subject to treatment.



Should You have any questions or concerns, please do not hesitate to

contact us. We will try address all Your questions promptly.



You can share this message with other MS patients, if You feel that it is

appropriate.



Best regards,





Marcin Duszyński







Marcin Duszyński

AMEDS Centrum Sp. z o.o.
Al. Ujazdowskie 41
00-540 Warszawa, Poland
mobile: +48 695 025 431
tel.: +48 (22) 319 5681
fax: +48 (22) 319 5680
email: m.duszynski@ameds.pl
www: www.ameds.pl



Sąd Rejonowy dla m. st. Warszawy Wydział Gospodarczy Krajowego Rejestru Sądowego

KRS: 0000348567; Wysokość kapitału zakładowego: 10.000 zł
-------------------------------------------------------------------------------------------------------------------------------

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otrzymana w wyniku pomyłki, prosimy o jej usunięcie i powiadomienie o tym fakcie nadawcy.

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use of the individual or entity to whom they are addressed. If you have received this email

in error, please delete it and notify the sender.

-------------------------------------------------------------------------------------------------------------------------------



From: Brian Putman [mailto:brianputman125@hotmail.com]
Sent: Thursday, March 04, 2010 8:21 PM
To: ms@ameds.pl
Subject: CCSVI examinations and treatment




Dear AMEDS,

I am a UK citizen who has had MS for eight years. I am interested in your CCSVI examination and surgery, if needed. I would like to book a date for a comprehensive medical examination, and the subsequent surgery.

I look forward to hearing from you.

Brian Putman
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Postby JOJOB » Fri Mar 05, 2010 6:39 am

Hello Brian,

Its good news but where did you hear from AMEDS ???

Never heard of it.

I look into it on the web to see, it looks like another interesting place to go to ..... :D :D :D

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Postby VictoriousVictoria » Fri Mar 05, 2010 11:08 am

HELLO TO ANYONE WHO CAN ASSIST- I think I can speak for most MS sufferers around the globe that the CCSVI scan gives us something to look forward to ... just having the test. But it doesn't seem so straight forward to get the test in the first place.
Today alone we tried to call the Paris hospital over 8 times, and no one answered the phone. We are trying to get the Doppler as soon as we can as I am in a wheelchair, can't walk and now my hand and arm are getting worse and I fear I won't be able to get myself into my chair on my own soon. I am losing my faith - and need someone to help me find a way to get this all important appointment which I understand may help me. Is there something I'm missing? A special number? Do I need to go through my very dismissive neuro or GP? What ever advise someone can offer I would be so grateful. I am based in London.
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Postby larmo » Fri Mar 05, 2010 10:26 pm

brianputman125 wrote:Dear Brian,
Thank You for Your interest in AMEDS.
....

I look forward to hearing from you.

Brian Putman


It starts out as the same form letter I received a few weeks ago but yours contains much more detail. Mine was about 1/5 as long as yours. I haven't heard back from them in a few weeks.

My 'feelers' are out in India, Poland, Frankfurt & 2 in New York. One of them is going to come thru by this summer.
Remember; "The squeaky wheel gets the grease" - keep squeaking people !!!!
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RE DR. ZIVADINOV'S SYDNEY VISIT

Postby seeva » Sat Mar 06, 2010 9:39 pm

HI members the recent visit ofDR. ZIVADINOV' toSYDNEY on the 2nd of MARCH WHO is the neurologist has done the researches of CTEVD/CCSVI STUDIES AT BAFFALO NEURROIMAGING ANALYSIS CENTER. was arranged to give precentations on UB RESERRCH WORKS to MOST OF THE SYDNEY neurologists including my neuro.I have had a meeting with my neuro. very next day. 3rd of march My neruo told me that he and his friends DRS. were very disappointed on the infomation they were told by DR.ZIVADINOV' from his UB studies none of them supporting DR.ZAMBONI'S THORIES OR his LIBRATION PROCEDURE treatment can hep to treat CCSVI ON M.S His staement was complely oppasite to his first results press release which is in UB REPORTER dated march 4th. Which say that promising results in M.S study.But when he came to SYDNEY gave different picture on DR.ZAMBONI'S WORKS AND HIS treatment.Now my neruo say that he and his frinds neurologitsts were not supporting DR.ZI. And his treatment for CCSVI ON M.S I had my doppler examnination by DR.PAUL THIBULT at his newcastle clinic on the 24th march and he found i have very bad venous stenosis on my right internel jugular vain.his next step is he is arranging to go to a experienced interventional radiologist at St VINCENT'S hospital to have my venography first subsequntly for a possible LIBRATION PROCEDURE in the same day.But my neuro now after the meeting with DR.ZIVADINOV SAYS that any MRV OR DOPPLER examinations will not give clear picture.SO DR. ZAMBONI'S treatment do not work. asked me to not to go for any examination or any opration.If i want he can send me to RPA hospital's interventional radiologist his name is DR. PARKER;lwho is my neruro's friend for a venography first then after six month time he wants me to go for oprations if i want.So my wife not willing to send me for any opration now. ALL US BACK WERE WE STARTED.
REGARDS
SEEVA :roll:
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CCSVI

Postby Opera » Sun Mar 07, 2010 3:46 am

Seeva,

Please check your Private Messages.
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CCSVI

Postby Opera » Sun Mar 07, 2010 3:57 am

Seeva,

CCSVI has been established as a medical condition which is seperate to MS. All these arguments and controversies are about the connection between MS and CCSVI.

If your reports show that you have CCSVI, as suugested by Dr Theabault go and see an intervantional radiologist. Do not talk about MS. Just say you have CCSVI and ask him to fix the problem. He may even do it under Medicare.

Best of Luck
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