This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.lfpress.com/news/london/2010 ... 35416.html

cheers

yes...we've been discussing Dr. Spence here:
http://www.thisisms.com/ftopict-12944.html

He is ill-informed. He hasn't read the research...it is not intracranial venous stenosis, or related to venous stroke. It is EXTRA-cranial venous stenosis which changes the hemodynamics of circulation.

I've contacted him and politely suggested he might want to read the research at CCSVI.org
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

yes, you right but don't you think the procedure is so expensive? the real cost with the stent is more/less 1500 euros. they charge 4 times more than the cost is. Some people they doing everything to get the money - loans, selling goods...etc, we know that most of people with ms dont work. I am a good example, i took loan for 5 years , the procedure does not work, i got stent for life and nothing else I can do.

cheers
J

I think looking at the cost of a single stent is forgetting the procedure happens in a outpatient environment and there are costs associated with that.

You are given IV fluids, IV contrast, you are under a location specific xray machine, there is the initial catheter and any additional balloons and/or stents, there is the IR doing the procedure, the nurses monitoring your condition during the procedure, the recovery and prep time at the facility...AND the charges differ depending on what type of facility you go to whether it be a hospital or private practice office...

Consider this, DMDs are just as expensive, the costs are just spread over a year. For example, my Rebif costs $2,500 a month, that is $30k a year. Mind you, I am lucky and my insurance covers that cost and my annual out-of-pocket is around $300, but the cost is still $30k a year.

Venoplasty for pathologic issues in my veins is most likely covered by my insurance, the percentage for that coverage depends on what they 'approve' or have agreed to with the facility...so I don't know what I will end up paying but in the grand scheme of things... I am not concerned over the cost of a single balloon or stent (not going for the stent yet but each item is charged separately).

_________________
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10

my first Australian procedure cost AUD2000, and that included rent of the x-ray machine by the hour (a variable, depending upon how complex your case is), the skills of a very experienced IR, and the lab work to analyse my blood. Balloons cost around AUD400 each (another variable, depending upon how many problem areas are being treated). Procedure was done in a day-centre, and I was allowed back to my local home a few hrs later. The cost of the procedure was covered by medicare.

When I read the sums charged by doctors in the USA, I am sure that a large component must cover insurance....and a sizeable portion is profiteering. I expect anyone who diagnoses or treats CCSVI to make money - but the fees charged in the USA are out of this world. No wonder so many are flying to Europe for diagnosis/treatment.

I had my angioplasty done in Belgium, in one of the best hospitals: Aalst, OLV hospital. http://www.businet.be/bus_medical/cardio/

Costs (one day treatment): 1700 euro. All in.

Stents, if nessesary) are extra (about 1000 euro per stent I think).

Alas, you are correct, the fees here in the US suck tremendously. I think much of it is because most facilities and physicians make agreements with insurance companies. These agreements take off a certain amount of a fee charged, then there is a percentage of that fee paid by the insurance company then the rest is paid out by the patient.

Oh, and there is that part that is most likely charged because of the threat of malpractice lawsuits...I hate to say it but we are a suing society and that has caused additional problems in CCSVI arena here, no one wants to take on a 'potentially risky' procedure and risk a lawsuit if a problem arises...

sigh...just ridiculous.

_________________
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10

Publishing and taking money for this article is robbery. Highway robbery.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Best to not even post stuff like that here bc it just gives them further air time. I prefer to ignore it, too many far too vocal naysayers of Zamboni's breakthrough and it is very telling.

Dr. Sandy McDonald has responded to Dr. Spence's comments. Here's what he had to say in a Letter to Editor, published electronically (but not in print) June 30

Letter to the Editor London Free Press Dr. David Spence missed the mark in several of his comments in the recent article "Doc calls costly therapy robbery" (July 27, 2010).

The article stated "One of the problems with the theory that multiple sclerosis is connected to blocked veins is that narrowed veins in the brain can cause strokes. But the part of the brain affected by strokes is not the same part affected in MS."

Strokes are usually caused by arterial blockages. In Dr. Paolo Zamboni's findings of chronic cerebrospinal venous insufficiency(CCSVI) in people with M.S., Dr. Zamboni reported venous blockage of the jugular veins which carry blood from the brain--not arterial blockages carrying blood to the brain, as are often found in strokes.

Dr. Spence also points out many MS lesions are found in the spinal cord, not in the brain. Dr. Spence then concludes narrowing of veins in the brain will not cause those lesions. Again, it appears Dr. Spence is not familiar with Dr. Zamboni's findings concerning the azygous veins, (which are responsible for the drainage of the spinal cord). Many researchers who have reviewed Dr. Zamboni's work also found significant abnormalities in azygous veins, which, in turn, lead to spinal cord lesions.

There is good scientific evidence that supports the veno-centric position of lesions in M.S.

I recently had the opportunity to review new research findings studying MRIs and MRVs of people with MS. The research to date is very compelling and supports findings of Dr. Zamboni and others.

Modern neurology holds that MS is an autoimmune, inflammatory syndrome of unknown cause, revolving around that model. What if they're wrong? It may be that nobody finds a cure for M.S. because nobody thinks outside the box.

The venous theory has been available since 1935 and was recently reactivated by Dr. Zamboni and others. We have tested over 300 patients with MS and have found blocked jugular veins and other venous anomalies in over 90% of them. I and other vascular surgeons and interventional radiologists are prevented from treating these blocked veins in patients with M.S. in Canada, resulting in many going overseas or to the United States for the treatment, which Dr. Spence calls "robbery."

It is imperative Dr. Spence and others who are so suspicious of CCSVI give it serious attention. Patients with M.S. deserve no less.

Sandy McDonald, RVT, MD, FRSCS, FACS Vascular Surgeon Medical Director, Barrie Vascular Imaging, Barrie Ontario

I guess that is directed at me and not Dr. MacDonald. But what really counts is not newspapers or radio or even TV, to the extent of peer-reviewed research and word of mouth. I know Saskatchewan will do good research, and I hope for, but don't count on the private clinics to do some neurology too.

Anyway I ain't afraid o' no ghosts.

And I don't see why all research procedures have to be free. The CCSVI community stands to benefit either way, plus, people who are very disabled are even not as likely to be able to make the trip for the procedure, regardless of whether they pay for it or their insurance does.

So who cares if one of the best CCSVI IRs in the world sits on his hands (besides me and a few other die-hards)? There are other IRs and Vascular Surgeons, and they are some of them going to run scientific trials too. I presume some of them are waiting on the Buffalo results, but if I were a gambler I would not bet they will be bulletproof. Any possible chance the neigh-sayers have to de-potentiate the Buffalo results will be run with (as was the figure of 25% prevalence in the non-MS population in the earlier results).

You could say that early publication has hardened th Buffalo results, but I will still predict they will not be universally accepted. By the time they appear there may even be results from clinical trials of the procedure elsewhere.

Besides I ain't afraid o no ghosts...

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience