CCSVI - Aussie Action!

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

RE REPLY FROM DR.PAUL THIBAULT ON CCSVI

Postby seeva » Tue Feb 02, 2010 4:40 am

HI Members the following letter i have recived from DR.Paul Thibault who is Phleboliist and runs CENTRAL VEIN&COSMETIC MEDICAL CENRE
Newcasle.
His reply follow regards seeva

I will be presenting Dr Zamboni's work on CCSVI and MS at the Annual
Scientific Meeting of the Australasian College of Phlebology in Auckland
next week. There are very few Phleobologists (or Neurologists) in
Australia that are aware of Dr Zamboni's theories and findings.

At the moment we are not doing the examinations or endovenous
treatments, but I plan to set up a special clinic for this purpose in
the near future, probably in Sydney. It will need to be a "team" effort
with probable input from interested interventional radiologists.

I will keep you informed.

Regards
Paul Thibault FACP :roll: :roll:
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Postby mazza » Tue Feb 02, 2010 5:22 am

That's great news! Finally some progress. Thanks for letting us know Seeva.

Deb Cameron on 2BL ABC radio interviewed Dr George Jelinek about his new book this morning. They were taking calls and I tried but didn't get through. I had hoped to mention CCSVI and the possible parallels between the diet he recommends and the need to keep the blood thin and flowing through narrow or pinched veins.

Unfortunately he didn't mention it either. Sent her an email but no reply as yet.
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RE REPLY FROM DR.PAUL THIBAULT ON CCSVI

Postby seeva » Tue Feb 02, 2010 5:19 pm

HI MEMBERS THE FOLOWING LETTER I HAVE RECIVED FROM DR.PAUL THIBAULT TODAY. VERY GOOD NEWS FOR AUUSSI
REGARDS
SEEVA

THIS TIS THE LETTER.

Dear Kandiah


It will take some time to get this clinic organised correctly so as to
achieve the best results.
In Australia, it is more likely that we will have an interventional
radiologist doing the procedures rather than a vascular surgeon.
But it will be a multi-disciplinary clinic as this is a complex disease.
The clinic at this stage is most likely to be in Bondi Junction and the
procedures will possibly be performed at an Eastern Suburbs Hospital.
There are a few bridges to cross still..

Regards
Paul Thibault

:roll: :roll:
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stenosis at junction of internal jugular & transverse si

Postby hwebb » Wed Feb 03, 2010 6:33 pm

Some of you know that I've been working with a Melbourne based clinic to get an MRV done, as I had a Doppler Ultrasound of my neck indicating a very thin left jugular vein and very low blood flow through this at the neck. I have not been able to get a cranial Doppler Ultrasound as yet.

Anyway, I had some MRV studies done (Haacke protocol). The clinic were not able to run the flow quantification scans at this time (just getting the software), but were able to run those others suggested by Haacke.

A stenosis was apparent at the junction of left internal jugular and left transverse sinus. I feel a lot of tightness in my head around the location of this stenosis. I believe it's likely the bulbous vein either side of the stenosis is placing pressure on the trigeminal nerve....resulting in a whole pile of the symptoms I've had of late (numb lips, numb scalp, numb ear, numb forehead, tight temple).

Anyway, the radiology clinic said it was OK if I recommended them to others, though they only accept clients by referral and only discuss results/techniques with the doctor ordering the scans. Anyway, if you're interested in a Haacke protocol MRV (not including the flow quantification scan as yet), have your doctor request this of the Symbion Imaging Group, Richmond (ATTN: head radiologist).

I am under the care of a vascular specialist, who ordered these scans for me as I presented with clinical symptoms and bulbous veins in my face/neck.

hwebb
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Postby avantitech » Wed Feb 03, 2010 9:36 pm

Folks,

My ultrasound report is as follows:

1. Internal jugular veins too small to see in the erect position.

2. Marked low flows demonstrated in both right and left internal jugular veins in the supine position. Low flows also demonstrated in both vertebral arteries with also low dimensions.

3. Inverted valve of the left internal jugular vein with mild wall thickening.

I can't say I'm surprised.. the hard part is now (as a couple of medicos said to me with gusto) ......'what can you do about it?'

I'm just getting started.

For those who are interested in my variation to the vascular abnormality theme, here are the measured FINDINGS:
(Notice the N or Normal ranges of the values and compare them to the measured values)
RIGHT--------------------------------SUPINE---------------ERECT
IJV AREA (mm2)-------------------70---(N 69-143)--------0---(N 9-25)
IJV DOPPLER VOL (ml/m)---------18---(N 430-970)-------0---(N 0-170)
VERTEBRAL AREA (mm2)----------7.5---(N 7.8-13.4)-----3.3-(N 8.3-15.5)
VERTEBRAL DOPP. VOL (ml/m)----0.2--(N 20-60)--------7.5-(N 90-330)

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

I am now seeking a consultation with an interventional radiologist/vascular surgeon via my GP referral and will post progress or otherwise.

Cheers,
..Adolfo
Last edited by avantitech on Thu Feb 04, 2010 5:48 pm, edited 1 time in total.
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stent's (and alike) aren't a new technology

Postby hwebb » Wed Feb 03, 2010 10:51 pm

the medicos who said "what can you do about it" weren't thinking hard enough. Stent's are hardly a radical new technology. The link between venous abnormalities and MS symptoms is the radical new part of the equation. The treatment is a well-worn path for the appropriate specialist (unlikely to be a neurologist).
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Re: stent's (and alike) aren't a new technology

Postby CureOrBust » Thu Feb 04, 2010 5:03 pm

hwebb wrote:Anyway, the radiology clinic said it was OK if I recommended them to others, though they only accept clients by referral and only discuss results/techniques with the doctor ordering the scans. Anyway, if you're interested in a Haacke protocol MRV (not including the flow quantification scan as yet), have your doctor request this of the Symbion Imaging Group, Richmond (ATTN: head radiologist).
This is brilliant work. I am also close with a centre in Sydney now. Did yours perform an SWI?

hwebb wrote:Stent's are hardly a radical new technology.
I am not 100% sure, but I do not believe stents within the vascular system are as common (i.e. they are used currently mostly within the arterial system).
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RE REPLY FROM DR.PAUL THIBAULT ON CCSVI

Postby seeva » Thu Feb 04, 2010 7:33 pm

HI members today i have recived this letter from DR.Pual Thibault


Dear Kandiah


You will be one of the first to be advised.
Out of interest, have you followed Dr George Jelinek's advice regarding
lifestyle changes including diet?
I am interested in this aspect as it may tie in with the venous disease.

Regards
Paul :roll:
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Postby elaine » Thu Feb 04, 2010 8:00 pm

adolfo
i have just checked my measured findings my figures are exactly like yours?
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Postby avantitech » Thu Feb 04, 2010 8:59 pm

We've conferred and the measured values are substantially different whereas the N normal ranges are the same.
Cheers,
..Adolfo
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SWI at Symbion Imaging Centre

Postby hwebb » Thu Feb 04, 2010 10:49 pm

Dear Cure,

yes SWI was performed at the Symbion Imaging Centre. They are looking into purchasing the software to do the flow quantification scans, and are awaiting a repsonse from the software vendor (siemens) now. It's likely this imaging centre will be able to perform the full Haacke protocol very soon. Interestingly, the Symbion Imaging Centre (Richmond) have the exact same instrument as Dr Haacke's (confirmed by Dr Haacke himself).

hwebb
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NZ - News!

Postby muse » Mon Feb 08, 2010 4:20 pm

Hi@,
just to let you know that there is a real chance that New Zealand could be the next country where MS-patients can get a “liberation treatment”.
After seven month battling against enormous ignorance of the medical establishment I’ve got (with help of my very open minded GP) an appointment (march) with a Neurosurgeon who is willing to have a closer look at my stenosis (V. jugularis) and if possible he will fix it! With a bit of luck a door is going to be open up for MS Patient in NZ - fingers crossed! :D
To get diagnosed with CCSVI in MS I had to have a MRI-examination (head/neck) at my own expense. Without such images there was no chance that any physician/specialist (except my GP) was listening to me or to get a treatment in NZ either. But with the images everyone can see now that I’ve a serious problem and the national health insurance will cover the treatment.
Keep going folks it’s possible even in down under! ;)
Best
Arne aka muse http://www.csvi-net/en

p.s. If the surgery is going to take place I will send more details.
p.p.s. My stenosis of the V. jugularis on Wikipedia: http://de.wikipedia.org/w/index.php?tit ... 0120230821
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Ultrasound Booking

Postby jianfei » Mon Feb 08, 2010 5:25 pm

Hi All,

I have booked in to get my Ultrasound (55276) at the Melbourne Radiology Clinic. Will find out the results. Do I also need to get MRV?? If so does anyone know where I can get this done in Melbourne?

Cheers

jianfei
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Postby avantitech » Mon Feb 08, 2010 5:53 pm

Welcome jianfei,

I'm just making sure that you are aware that a Medicare rebate is no longer available for this scan....the invoice from Melbourne Radiology will not even show an item number, and the cost to the patient is fully $225.

Cheers
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Re: NZ - News!

Postby ErikaSlovakia » Tue Feb 09, 2010 2:11 am

muse wrote:Hi@,
just to let you know that there is a real chance that New Zealand could be the next country where MS-patients can get a “liberation treatment”.

Oh, I am sooooo happy for you :D :D :D
I wish you the best!!!
Good luck!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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