CCSVI - Aussie Action!

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

LIBERATION PROCEDURE IN SYDNEY

Postby ACE » Mon Mar 15, 2010 4:50 pm

Hi for anyone out there that wants to have the Liberation treatment (Angioplasty) as outlined and performed by Dr Zamboni, I have all the contacts and information needed to have it done in Sydney in Hospital by Doctors who believe in the procedure and in CCSVI........I dont wish to advertise it on this forum, so please contact me directly and I will be glad to pass on the information......Dr Alexander Sima Very Happy
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how r u alexander ?

Postby hwebb » Mon Mar 15, 2010 7:14 pm

Hey Alex,

I take it you've been liberated? How are you feeling?

Helen
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Re: Doppler Protocol

Postby avantitech » Mon Mar 15, 2010 7:49 pm

lodgernz wrote:Hi all, I had a link to a pdf of the Doppler protocol for CCSVI, presumably that of Dr Menegatti, but the pdf is broken. does anyone know where a good copy is please? I have the MRV protocol.
Cheers,
Roger

Hi Roger,
Try this small collection here:
http://www.voyager2.com.au/index.php?op ... &Itemid=10
..Adolfo
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Postby elaine » Mon Mar 15, 2010 8:56 pm

hello i just got back from seeing Prof T and i have my appointment booked for the 6th April ....Yay i am so excited !!!!!
Thanks to all of you
Elaine
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Postby avantitech » Tue Mar 16, 2010 12:13 am

elaine wrote:hello i just got back from seeing Prof T and i have my appointment booked for the 6th April ....Yay i am so excited !!!!!
Thanks to all of you
Elaine

Fantastico Elaine,
You're on the way to...Freedom!
Very Glad to Hear a Lift Off date.

Folks,
This thread and messages have grown so much I'm losing track.
I'm keeping a Calendar to track venogram procedures in Melbourne here:
http://www.voyager2.com.au/index.php?op ... 0&Itemid=9
Any help in keeping accurate records will keep everyone up to date and is much appreciated.
Cheers,
..Adolfo
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Postby Val1964 » Tue Mar 16, 2010 12:31 am

Great Elaine, I get mine with prof. T on the 13th of april. yeah :lol: :D :) :o
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Postby taxi » Tue Mar 16, 2010 3:26 am

hi all, just a quick note to say that we had the procedure with prof. T today ... everything went well, right jug was not blocked but left jug was "definitely abnormal" and was ballooned.

not much to report as far as the MS goes, but i would like to write down what to expect -- except that it's been a super long day and i've had some computer trouble (that's what happens when you drop them off a moving bicycle) so i'll post more tomorrow.

thanks for everyone's wishes - we have quite a bit of interesting things to report (well i think so anyway) sorry i'm not up for it tonight.

cheers
mark
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Dr Scaflani's Views

Postby avantitech » Tue Mar 16, 2010 5:01 am

drsclafani wrote:Dr. Zamboni’s theory makes a lot of sense to me and I think that others will come around to understanding his elegant and simple conceptIf you have resistance to outflow from the brain, you will develop reduction of inflow. Inflow to the brain is a good thing. The Buffalo group has determined that there is reduction of blood flow in MS. So I look at treating CCSVI as first and foremost a strategy to reduce resistance to blood flow in the brain. How else can you explain the sudden clinical symptom improvements one sees in some patients with MS. Reduction in cogfog, loss of tingling in a matter of an hour makes no sense unless it is related to improving blood flow.

Personally I suspect that the insufficiency leads to upstream effects that may result in the clinical manifestations called MS. Whether treatment of the CCSVI will make a difference in the long term needs to be determined and that is why long term expensive trials are required.

Folks,

There's some interesting material - interpretations & explanations from another thread started by Dr. Scaflani an IR from Brooklyn NY..he did a venogram on Marc / Wheelchair Kamikaze last week.

It might clarify some hazy concepts and expectations. See what you think.

Dr Scaflani is providing an opportunity for lay people - patients & carers - to ask questions and have them answered in a medically accurate way without complexity. Bear in mind he "..cannot answer personal patient related questions as that constitutes care..on the internet".

The thread is here: http://www.thisisms.com/ftopict-10680.html

Cheers,
..adolfo
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Postby Salvatore24 » Tue Mar 16, 2010 7:29 pm

Good news people (in a twisted sort of way). I had my doppler on the 26/02 but I didn't receive any results. So I gave them a call last week to see what was happening. Today I finally got my results and are as follows (copied word for word):

RIGHT SUPINE

IJV AREA (mm2) - 9 (N 69-143)
IJV DOPPLER VOL (ml/M) - 267 (N 430-970)
VERTEBRAL AREA (mm2) - 4 (N 7.8-13.4)
VERTEBRAL ADOPP VOL (ml/m) - 16 (N 20-60)

RIGHT ERECT

IJV AREA (mm2) - 5 (N 9-25)
IJV DOPPLER VOL (ml/M) - 30 (N 0-170)
VERTEBRAL AREA (mm2) - 3 (N 8.3-15.5)
VERTEBRAL ADOPP VOL (ml/m) - 12 (N 90-330)

LEFT SUPINE

IJV AREA (mm2) - 23 (N 69-143)
IJV DOPPLER VOL (ml/M) - 262 (N 430-970)
VERTEBRAL AREA (mm2) - 2 (N 7.8-13.4)
VERTEBRAL ADOPP VOL (ml/m) - 7 (N 20-60)


LEFT ERECT

IJV AREA (mm2) - 16 (N 9-25)
IJV DOPPLER VOL (ml/M) - 69 (N 0-170)
VERTEBRAL AREA (mm2) - 9 (N 8.3-15.5)
VERTEBRAL ADOPP VOL (ml/m) - 178 (N 90-330)

Stenosis: YES (hooray!)

Peak systolic velocities of the right internal jugular vein of 134cm/sec with prestenotic velocities of 25cm/sec correlates with a greater than 50% stenosis.

Peak systolic velocities of the left internal jugular vein of 96cm/sec with prestenotic velocities of 24cm/sec correlates with a greater than 50% stenosis.

Aneurysm: No

Reflux (> 0.88sec):

DCSA IJV (N > 0): Supine - Erect CSA IJV Right: Normal Left: Normal

COMMENTS:

1. Bilateral stenoses opf the internal jugular veins with reduced volume flow in both jugular veins in the supine position.

2. Reduced volume flow in the right vertebral vein in the erect position.

3. Only mild change in the diameters is demonstrated from the supine to erect position of the internal jugular veins, which supports the diagnosis of chronic cerebrospinal venous insufficiency.

Ok so I'm not a doctor or medical professional, but the discrepencies between my right jugular vein and the normal range is huge. This has given me a major boost, I thought they were taking their time to send out the results because they didn't find anything, hence not being urgent.


Now, onto my question:

Do I need to call the clinic back to get a referral or do I have to seek out a doctor on my own? (More than likely it will be Prof. T)
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Postby Rokkit » Tue Mar 16, 2010 8:19 pm

Congratulations! It's weird how it feels so good to find out something's wrong with you.
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Postby avantitech » Tue Mar 16, 2010 8:46 pm

Salvatore24 wrote:Do I need to call the clinic back to get a referral or do I have to seek out a doctor on my own? (More than likely it will be Prof. T)


Matt,
call Prof Thomson 9076 2536 asap and make an appt. with Jan his PA.
Then, make appt with GP. Then bring results to GP, show him/her and request referral to Prof Thomson @ The Alfred.
That's it.
Do not Pass Go
Do not collect $200
(you wont need it)

Cheers
..Adolfo
PS: These results indicate you probably are really one of Alien, Predator or Terminator...but which one?
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Postby Salvatore24 » Tue Mar 16, 2010 10:03 pm

Rokkit wrote:Congratulations! It's weird how it feels so good to find out something's wrong with you.


Cheers Rokkit, this is probably the first time in my life where I've wanted something to be wrong with me.

avantitech wrote:Matt,
call Prof Thomson 9076 2536 asap and make an appt. with Jan his PA.
Then, make appt with GP. Then bring results to GP, show him/her and request referral to Prof Thomson @ The Alfred.
That's it.
Do not Pass Go
Do not collect $200
(you wont need it)

Cheers
..Adolfo


Thanks Adolfo, i'll give them a call tomorrow.

PS: These results indicate you probably are really one of Alien, Predator or Terminator...but which one?


LOL! At the moment I'm more like a Predator or Alien, with the abnormal venous structure. Hopefully after the procedure I'll be indestructible, more like a Terminator or Iron Man, much like I was before my MS symptoms started. How are you going?
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Helen's balloon and angioplasty

Postby hwebb » Tue Mar 16, 2010 11:46 pm

Hi all!

I had my venogram and balloon procedure today. It seemed to go well. I had balooning done in the azygous vein and left jugular [junction of transverse sinus]. Definitely, the balooning recreated the same pressure I am feeling in my head hopefully everything will improve now that the blood is flowing better.

Helen
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Postby elaine » Tue Mar 16, 2010 11:56 pm

good to hear your doing well Helen hopefuly there will be plenty of improvments for you.
Mark im glad the procedure went well for your wife, you sound like a wonderful husband wishing you both all the best.
elaine
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Postby nico » Wed Mar 17, 2010 12:11 am

glad everyone's doing well! still very up and down myself, will report when it's worthwhile! cheers, nico
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