CCSVI - Aussie Action!

elaine · Post by **elaine** » Tue Apr 06, 2010 2:48 pm

Hi everyone
just to let you know i had the procedure done yesterday.Proff T found and ballooned a two places.Vein (sorry don't know correct term) at the base of my scull on the right hand side, and also balloned my left jugular valve.Was sore when he was doing valve, i didn't have any sedation.My azygos was fine.I had a headache last night and was a bit sore.This morning no headache, feel a little sore on the left side of neck but not to bad.I havn't noticed any difference at this stage but it is only day one.
cheers Elaine
PS the proff is an amazing man, he really is there just for the people and his staff are wonderfull.

kezzcass · Post by **kezzcass** » Tue Apr 06, 2010 9:42 pm

G'day everyone,

See attached link for latest statement from MS Research Australia on CCSVI.

http://www.msra.org.au/news-media/news.php#CautionCCSVI

friday_fc · Post by **friday_fc** » Tue Apr 06, 2010 10:46 pm

kezzcass wrote:G'day everyone,

See attached link for latest statement from MS Research Australia on CCSVI.

http://www.msra.org.au/news-media/news.php#CautionCCSVI

i cant, Kezz, i cant bring myself to read ANOTHER attempt to squash our hopes by those people. I started to read it this morning after an update from MSRA came to my email and i closed it down, pronto, once i saw the tone of it.

friday_fc · Post by **friday_fc** » Wed Apr 07, 2010 1:27 am

Is it true Prof Thomson and his crew are booked out for all ccsvi procedures until the end of May, THEN he will stop to re evaluate with neurologists and have a formal trial?

hwebb · Post by **hwebb** » Wed Apr 07, 2010 2:44 am

what is your source of information?

friday_fc · Post by **friday_fc** » Wed Apr 07, 2010 2:50 am

my friend told me it was Prof T's reply email to her. I havent seen the email, it was explained that way to me

CureOrBust · Post by **CureOrBust** » Wed Apr 07, 2010 4:44 am

I had an appointment for the end of this month for the initial consult, but it got moved to mid May because of a schedule conflict (he is going OS). I hope he is planning on accepting an appointment for treatment, from this consult.

How long did others find he went from consult to scheduling a date for treatment?

hwebb · Post by **hwebb** » Wed Apr 07, 2010 5:05 pm

Exciting news for Kuwait:

http://www.thisisms.com/ftopic-11043-0.html

the Kuwait government is implementing a plan to treat all it's citizens who suffer MS/CCSVI.[/quote]

Lovafish · Post by **Lovafish** » Thu Apr 08, 2010 2:29 am

Hi All

I have just moved from Melbourne to Brisbane (now my new home town).

It happened before I had the chance to visit Dr. Thomson in Melbourne.

Is anyone able to update me on any progress with a vascular surgeon in Bribane who is doing the same as Dr. Thomson?

Cheers
Peter

Opera · Post by **Opera** » Thu Apr 08, 2010 3:58 am

Peter

Check your PM

hwebb · Post by **hwebb** » Thu Apr 08, 2010 1:12 pm

Jennifer,
I'm having trouble sending you a PM (message to you just sits in my outbox). Maybe your inbox is full?
Helen

smokey · Post by **smokey** » Thu Apr 08, 2010 9:07 pm

Hi everyone - well, saw Prof. T today and here are the results.

'The superior right internal jugular has a stenosis of greater than 50%. There is also a mid-vein stenosis present measuring greater than 50%. Left jugular vein all normal'.

And yes, it's true that Prof.T is not accepting any new patients, and currently he has a waiting list for MS/angioplasties

. He will consult with neurologists May/June '10 and hopefully begin a clinical trial.

Fingers XXXX'd everyone. Let's hope, for all of us, that this trial happens.

smokey · Post by **smokey** » Thu Apr 08, 2010 10:37 pm

Mind you, clinical trials take forever to set up. Not happy Jan!

avantitech · Post by **avantitech** » Thu Apr 08, 2010 11:16 pm

Smokey,

For all intents and purposes the initial (pilot) clinical trial @ the Alfred has already begun (first 20-30 angioplasties) and an evaluation of these patients' clinical outcomes in May-June will determine an expanded clinical trial's framework. Evaluations will probably continue over at least 18 months.

This process will ensure angioplasty procedures:
1. will continue;
2. will be conducted with oversight of a medical research review board; and
3. the studies & data ultimately will be peer reviewed by being published in reputable scientific/medical journals.

Cheers,
..Adolfo

avantitech · Post by **avantitech** » Thu Apr 08, 2010 11:49 pm

G'day Folks,

Last week a 1 month Post Op ultrasound was conducted @MelbRad, and these are the measured FINDINGS in Red compared to the Pre Op values in curly brackets:

(N = Normal ranges of the values. Compare them to the measured values)
RIGHT--------------------------------SUPINE-----------------------ERECT
IJV AREA (mm2)-------------------4{70}---(N 69-143)--------11{0}---(N 9-25)
IJV DOPPLER VOL (ml/m)---------29{18}---(N 430-970)-------85{0}---(N 0-170)
VERTEBRAL AREA (mm2)----------3{7.5}---(N 7.8-13.4)-----2{3.3}-(N 8.3-15.5)
VERTEBRAL DOPP. VOL (ml/m)----35{0.2}--(N 20-60)------26{7.5}-(N 90-330)

LEFT---------------------------------- SUPINE----------------------ERECT
IJV AREA (mm2)--------------------8{74}---(N 69-143)--------8{0}---(N 9-25)
IJV DOPPLER VOL (ml/m)----------77{26}---(N 430-970)-------230{0}---(N 0-170)
VERTEBRAL AREA (mm2)------------4{3.3}--(N 7.8-13.4)-----5{3.0}--(N 8.3-15.5)
VERTEBRAL DOPP. VOL (ml/m)-----33{6}----(N 20-60)------32{7}----(N 90-330)

CONCLUSIONS:
1. Long segment stenoses of both internal jugular veins involving the mid to inferior aspect of > 50%.
2. Low flows in both internal jugular veins with low diameter in the supine position.
The above described findings have improved as when compared with the previous examination of 29/01/2010.

Post operatively there is an expected reduction in vessel cross sectional area due to elastic recoil of the endothelium/wall. However the results show flow improvements (double previous IJV & quadruple VV flow rates) which correlate with my subjective feeling better and am looking forward to a second venoplasty procedure.

Op + 38 days:
1. Less Right Drop foot & Walking better.
2. Thinking more clearly, conversing better.
3. Voice stronger but somewhat reduced than @ 21 days.
4. Fatigue about the same as @ 21 days.
5. Sleep is now less restful than @ 21 days maybe due to >bladder urgency.
6. Very few foot spasms with no leg spasms at all at night
7. Bladder evacuation/urgency has regressed some than @ 21 days.
8. Right hand and foot Reynaud's not present but both are colder to the touch than left hand & foot.

Cheers,
..Adolfo

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CCSVI - Aussie Action!

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Clinical trials

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IJV VENOPLASTY Post Op + 30 days - Ultrasound Findings