CCSVI - Aussie Action!

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

comparison of Australian response with UK response

Postby hwebb » Wed Feb 17, 2010 2:29 am

the "official" response in the UK is certainly different to that in Australia:

Glasgow Health Solutions are actively seeking to offer scanning for CCSVI in the UK in 2010 in both London and Glasgow.

The Doppler ultrasound scan required to show the CCSVI abnormalities has been specially adapted and requires specialist training from Prof Zamboni and his team. It is vital to work with the recognised specialists in this field and they hope to have ultrasound technician trained by Dr Zamboni later this year.

The cost of the scans in the UK is still to be finalized but should be around 250 to 300 pounds. They are also liasing with intervention radiologists to develop treatment centres in the UK.

If you wish to register your interest and be kept informed of these developments you can register your interest in the web site - http://www.essentialhealthclinic.com/we ... etter.html

Helen Yates, MSRC Chief Executive said: "MSRC is fully supportive of Essential Health Clinic's efforts to enable scanning for CCSVI in MS patients in the UK. Currently anyone who believes that they have this problem has to go to Europe even just to get scanned, never mind treated. Enabling the scanning to take place here in the UK will represent a big step forward for people affected by Multiple Sclerosis who believe this venous insufficiency problem lies at the root of their MS"
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Postby elaine » Wed Feb 17, 2010 1:26 pm

i just don't get it why is the ms soceity in australia not moving? is it because there still has been no media coverage in australia? and what is that? why hasn't there been any mention i known people have emailed and have written to media but still nothing!! I feel like we are banging our heads against brick walls.What else can we do??
feeling very frustrated.
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Re: cranial doppler melbourne ...nearly

Postby nico » Wed Feb 17, 2010 2:52 pm

nico wrote:
hwebb wrote:Hi all,

I mentioned a little while ago that I was schedued for a cranial doppler today. I attended my appointment today, but all did not go as planned. The sonographer had a cranial probe...but it didn't seem to be sensitive enough. It could only probe the thinnest parts of my head - such as my temple - so he couldn't investigate suspected stenosis in other areas of my cranium (as hinted at in the MRV analysis). Also, I had forwarded the sonographer various information about the correct doppler technique via the vascular surgeon I've been seeing. The info didn't make it to the sonographer - who was very interested in this work, and helpful.

Anyway, I will stay in touch with the sonographer, and now have his direct contact details. He may be able to access a more sensitive probe in the future. I'll post if i ever have a successful cranial doppler.

There in currently only a single sonographer with the appropriate training and equipment to do a Doppler ultrasound of yr neck. Details have b een provided in previous posts. Also provided on the CCSVI Aust web page. Best of luck. cheers, nico

____________________________________________________________
just to clarify, l, Nico,. DID have the right Doppler scan, which revealed CCSVI. My messages are not posting correctly. There is ONLY one location in the southern hemisphere where this scan of the jugular veins can be done with the right equipment AND WHERE THE SONOGRAPHER HAS THE APPROPRIATE TRAINING TO DO THIS.
There is no need for every MS patient to reinvent the wheel, so to speak!
Unless we band together there is a distinct possibility that MS patients in Australia will undergo innacurate testing. This we do not need!
As yet, appropriate TREATMENT, i.e.; widening of the jugular/azygos veins is not yet available. It is a matter of time. Unstructured and desperate investigations may well be unhelpful. I, as do all MS patients, need this sooner rather than later, but we need it done right. Please refer to previous posts and the CCSVI Australia facebook page for contact details of the Melbourne Radiology Clinic.
Ragards. Nico.
P.S. We ' re all in this together don't forget!
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Postby Downunder » Wed Feb 17, 2010 6:48 pm

Sorry to repeat myself, but go to:
http://doctor-finder.sirweb.org/index.cfm

Put Australia in the coutry search and you will get a list of Interventional Radiologists. Pick one and email them through the site.

That's what I have done and as soon as he's back from holidays I will talk to him.

Please everyone, this is what we do next.
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Postby Downunder » Wed Feb 17, 2010 6:53 pm

Oops, also meant to say, (from Dr. Haake)

We need to stop saying CCSVI is related to the etiology of MS. We need to tell them there is another disease out there called CCSVI and many MS patients have it.
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Postby Calochilus » Wed Feb 17, 2010 8:24 pm

Downunder wrote:Oops, also meant to say, (from Dr. Haake)

We need to stop saying CCSVI is related to the etiology of MS. We need to tell them there is another disease out there called CCSVI and many MS patients have it.


My opinion entirely. I don't fit MS diagnostics at all in the conventional sense, I've been diagnosed with CFS but my primary issues are ONLY explicable in terms of CCSVI, failure of temperature regulation, temperature fall on exercise (vascular reflux?) heat and cold intolerance and palinopsia amongst other brain function defects and failures.
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Postby taxi » Thu Feb 18, 2010 2:29 am

Hi folks

My wife just had her doppler done at melbourne radiology and the results were amazingly encouraging. Who'd have thought that hearing that my wife's jugulars are completely stuffed up would be the best news I'd ever had?

here are her results... sorry for the crappy transcription.. note that the comments are summarised from the report and not verbatim:

RIGHT

IJV Area supine (mm2) 24 (69 - 143)
IJV Area erect (mm2) 3.1 (9-25)

IJV Doppler Vol supine (ml/m) 128 (430-970)
IJV Doppler Vol erect (ml/m) 110 (0-170)

Vertebral area supine (mm2) 8.8 (7.8-13.4)
Vertebral area erect (mm2) 5.1 (8.3-15.5)

Vertebral dopp vol supine (ml/m) 42 (20-60)
Vertebral dopp vol erect (ml/m) 98 (90-330)

LEFT

IJV Area supine (mm2) 13 (69 - 143)
IJV Area erect (mm2) 3 (9-25)

IJV Doppler Vol supine (ml/m) 89 (430-970)
IJV Doppler Vol erect (ml/m) 76 (0-170)

Vertebral area supine (mm2) 8.3 (7.8-13.4)
Vertebral area erect (mm2) 6.8 (8.3-15.5)

Vertebral dopp vol supine (ml/m) 39 (20-60)
Vertebral dopp vol erect (ml/m) 188 (90-330)

Comments:
Inverted left internal jugular valve.
Correlates with > 50% stenosis of both left and right IJV.

We have a GP appointment tomorrow and will be asking for a referral to a VS/IR... will post any news.

cheers
Mark
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Postby Salvatore24 » Thu Feb 18, 2010 3:58 am

Good news taxi :) (You know what I mean by "good")

Just a question for those who have been tested, is the Azygos vein being looked at?
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Postby avantitech » Thu Feb 18, 2010 4:34 am

Hi Salvatore,

Alas no - azygous vein not being imaged but maybe this can brought up with IR/VS if/when venogram investigation is to be performed.

Anybody have the latest figures for number of patients with positive results at Melb.Radiology such as blood flow anomalies, stenoses etc?

It appears that many of us have in common an inverted valve in the internal jugular vein either left or right.

However, let us stay grounded...as other TIMS members have already mentioned: in discussion with medical personnel the presence of any narrowed, stenosed or malformed veins should be diagnosed and treated as vascular abnormalities and NOT as a solution or cure for MS, until of course the requisite controlled trials have been completed and peer reviewed...

It seems to me that following any treatment for the vascular irregularities the auto immune reaction is still active and it probably would be a good idea to continue with any immune modulating medicatons for a good while longer.

Cheers,
...Adolfo
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Postby nico » Thu Feb 18, 2010 3:57 pm

avantitech wrote:Hi Salvatore,

Alas no - azygous vein not being imaged but maybe this can brought up with IR/VS if/when venogram investigation is to be performed.

Anybody have the latest figures for number of patients with positive results at Melb.Radiology such as blood flow anomalies, stenoses etc?

It appears that many of us have in common an inverted valve in the internal jugular vein either left or right.

However, let us stay grounded...as other TIMS members have already mentioned: in discussion with medical personnel the presence of any narrowed, stenosed or malformed veins should be diagnosed and treated as vascular abnormalities and NOT as a solution or cure for MS, until of course the requisite controlled trials have been completed and peer reviewed...

It seems to me that following any treatment for the vascular irregularities the auto immune reaction is still active and it probably would be a good idea to continue with any immune modulating medicatons for a good while longer.

Cheers,
...Adolfo


anecdotally Adolfo, l believe CCSVI is in fact cropping up in the 14-odd MS patients to date who have had the Doppler at the Melb Rad Clinic, however, as has been pointed out to me (thankyou!), CCSVI is a 'stand-alone' condition which a lot of MS patients happen to have.

Adolfo, l visited the same interventional radiologist who will be doing yr venogram on Mar 4, and, based on how it all goes and the results of my MRV, l hope l'll be treated soon.

All the very best, l sincerely hope you have a brilliant result!

cheers, Nico
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Postby avantitech » Thu Feb 18, 2010 6:52 pm

nico a big Thank you and a hearty Well Done!

Hopefully the procedure will improve blood flow in my IJV's...but I don't like my chances for the vertebral veins...a bit too small for the probe...let's see what can be done in the hands of the good doctor.

I figure we'll need to:

ask the IR to check the azygous if possible during the venogram, which I believe is using fluoroscope for imaging rather than MR;

and also

accept the other risk of the ballooning-only procedure i.e. restenosis within 18 months in 50% of patients as per original Prof. Zamboni's study, and then possibly consider doing another ultrasound scan and ballooning procedure if we get a relapse....

cheers,
..adolfo
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Postby nico » Thu Feb 18, 2010 10:14 pm

avantitech wrote:nico a big Thank you and a hearty Well Done!

Hopefully the procedure will improve blood flow in my IJV's...but I don't like my chances for the vertebral veins...a bit too small for the probe...let's see what can be done in the hands of the good doctor.

I figure we'll need to:

ask the IR to check the azygous if possible during the venogram, which I believe is using fluoroscope for imaging rather than MR;

and also

accept the other risk of the ballooning-only procedure i.e. restenosis within 18 months in 50% of patients as per original Prof. Zamboni's study, and then possibly consider doing another ultrasound scan and ballooning procedure if we get a relapse....

cheers,
..adolfo


hi adolfo,

thank u for your kind words! l asked Prof T about the azygos vein and the reason why l'm hanging on for the MRV at the Melb Rad Clinic is because:

1. l have narrowed jug veins but no stenosis in my neck, yet blood flow is really bad, which indicates stenosis SOMEWHERE;
2. it wiill assess flows thru my entire circulatory system, giving Prof T the info he needs to perform a balloon angioplasty exactly where he needs to, without going on a search mission as it were!
3. l called the Melb Rad Clinic this morning, the appropriate software has been received, is currently being installed and willl be ready for us mid-late March.

Re-stenosis risk is a lot higher for the jug veins than for the azygos vein, as per Prof. Z's findings.Hope this helps!

cheers, Nico
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Postby friday_fc » Fri Feb 19, 2010 1:26 am

I follow ALOT of CCSVI updates and groups on Twitter and I'm also following a Dr. Mark Godley at False Creek surgical centre in Vancouver (http://www.nationalsurgery.com/fcsc.html) Very comprehensive work being done there, anyhow, i asked what the implications of a stenosed azygous vein would be and he was kind enough to respond below:

falsecreekcare @bickie68 The azygous needs to be stented, always a risk of spinal damage if this gets blocked http://bit.ly/9Rix7o
4:51 AM Feb 18th from TweetDeck
Reply Retweet
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anti-inflammation diet

Postby hwebb » Fri Feb 19, 2010 5:55 pm

Hi all,
I'm reading a book on inflammation (conditions and dietary control of) at the moment. It says that if you have significant, prolonged inflammation, you are at risk of restenosis after balloon angioplasty. The book recommends sticking with an anti-inflammatory diet (such as Swank Diet)and maintaining adequate excercise, in order to control inflammation.

So please don't eat inflammatory foods (such as saturated fats) after you get balloon angioplasty!

hwebb
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Balloon Angioplasty

Postby kezzcass » Sun Feb 21, 2010 11:09 pm

Hi everyone,

I have just joined TIMS. Looks like I am #3 after Adolfo and Nico with Prof T. Anyway thought I would join the discussion and keep sharing the info around.

If you haven't seen my Youtube vid, Julie found both my jugulars were stenosed with the left considerably worse. I am scheduled for the balloon procedure in a few weeks on my left only.

I am keen to see how you two go first! Cannot wait for the day. Also looking forward to watching the evidence mount as more and more people get this procedure.

Kerri
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