This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.qnetnews.ca/?p=5953

This is an article on a woman who has been fund-raising since September in order to afford this treatment. She has raised $10,000 but needs $3000 or $4000 more for the total expenses. But then the article states this:

Really? This woman is exhausting herself holding fundraisers for months. The research coming in has not been supportive of MRV's diagnostic accuracy. If she did not have to pay for the MRV, she would be within $500 to $1500 of her goal. Instead she still has $3000 or $4000 to go. It's wrong.

I think the Doppler/IVUS and the fluoroscope are good weapons in this particular battle. If a doctor can convince the Ontario Government he needs to use more than that to look at my CCSVI, I might listen.

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

Let's be clear "Only Invasive Procedures Can Give Firm Diagnosis". So unless you have a catheter venogram and an intravenous ultrasound, no IR/VS can give a definitive diagnosis of CCSVI syndrome.

My vascular surgeon diagnosed using a catheter venogram without an MRV or doppler sonogram beforehand. Non invasive tests are screening tests, not full diagnosis tests as they cannot detect all issues.

Someone should give this lady the facts. Why is she going to a facility/clinic which insists on an MRV?

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

The ultrasound gives a decent view of the valvular malformations (the primary pathology); it can help size the vessels (although it underestimates it compared to ivus). ). This is a help when there is no IVUS.
I used to say that all that counted was venography. But i have come to learn that one can use ultrasound as a tool

Hello Dr S,

Statisically there will be cases where only veins in the trunk are stenosed and none in the neck (probably rare I agree). In these cases a Doppler Sonogram could give a false 'all clear' result.

Doppler sonography is very helpful in the hands of an expert but I hope you agree can give misleading results as shown in 7 (?) recent papers in neuro journals.

My main concern is this clinic insisting on an expensive MRV for a poor self funding patient. EHC (Scotland) include MRIs for all their patients, with no opt out for self financing pwMS. I question why as, for a large number of pwMS I know, cost is critical.

My wish/goal is to get as many pwMS de-stenosed as possible, rather than collecting data and doing research for MS experts. This puts me into conflict with MS experts in Britain but that's life.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I know of some good docs who are not using the MRV and Doppler because of their unreliability. They just go right in and do the procedure based on symptoms....As has been said, the docs don't really know what's going on until they go in to do the procedure.

Why should we expose ourselves to more gadolinium, which is not safe for all and does not always excrete from the body, if it is not necessary.

These pre-tests can give rough estimates of blockage amounts, but that is just data for the charts. It doesn't really help with the CCSVI procedure itself. It is also another money-maker for the health care system that doesn't really add much, if anything.

Apparently this new thing (ivus, or inus or something) however, may be more helpful. I don't know much about it.

IVUS, intravascular ultrasound. It's a tiny ultrasound device that is used during the procedure to see the veins from the inside. Amazing technology. It was most often used in cardiology procedures.

CeCe,
Are you in the United States. I will probably never understand all the science behind this....I just want to make sure I am going to one of the top IR docs who really knows what they are doing so I can get the best possible outcome. I don't know which doctor to see?

Thank you.

Carol, yes, I am in the US, in Minnesota. For myself I went with Dr. Sclafani in Brooklyn. His use of IVUS sets him apart as does his compassion for patients. He is thorough in his checking of veins including the iliac and the ascending lumbars. He has presented on CCSVI at ISET and ISNVD, which puts him among the thought leaders on CCSVI. He has been known to say things like, "I will discuss this with Paolo..." (Dr. Zamboni!)

You are in FL? I am not as familiar with the FL docs: Dr. Arslan, Dr. Katzen. There is Dr. Sullivan in Atlanta, who is with AAC and is said to be excellent.

Another big names is Pacific Interventionalists (now called Synergy?) out in California with Dr. Arata and Dr. Hewett.

Thanks CeCe,
Does Dr. Scalfani use the "tear method" that I had metnioned for the valve at the bottom?

Also, would it be safe to fly back to Florida a couple days after the procedure in terms of air pressure?

To Fly from Florida to Brooklyn is aabout 2 and 1/2 hours. The flight to California I believe is a good 5 hours or more.

I just want to go to the the best or one of the best to get the best outcome and have the most minimal chance of restenosis.

I have heard of Dr. Arslan. He would be the easiest/closest to get to for me. I have heard good things about him but I don't know if he knows about the tear method and popping all the fused valves. I have inquired but haven't been able to find out. He doesn't have the IVUS (sp?) though I know most doctors don't.

It took me a long time to finally decide to do CCSVI. But now I am stuck deciding who to go to. Also does Dr. Scalfani have a long wait list, do you happen to know?

This procedure is still being developed, Carollevin. It appears you are asking for definite answers to questions. By the time you get to the front of the queue for venoplasty the procedure could have been altered again. I advise starting a vascular health regime (vit D3 etc) and ask about your vascular family history. These may impact the success of your treatment but there is insufficient data to be certain.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I understand what you are saying Mark, and I agree.

I am a researcher by nature and myself and my family have had plenty of bad experiences with doctors in the past, some leading to death (having nothing to do with CCSVI--I'm talking about cancers, heart disease, dental stuff, etc).

I thought I was ready for CCSVI but perhaps I am not. It took me a long time to decide I would do it and now I'm stuck on what doctor to use. I know other people just go for it and hope for the best and don't worry as much about which doc to use,

I guess just my personality and experiences lead me to feel the particular doctor is very important....But like you said this is evolving so fast that even if I went to the best doc today, the procedure could be improved upon a week later.

Both Dr. Scalafini and I have moved away from the "tear" or "pop" method. We both have seen occlusions and severe restenosis after doing this. Instead we have been using IVUS to identify the location and cause of the stenosis and to determine the size of the normal surrounding vein. This allows maximal dilation of the abnormal valves (most common cause of stensosis) and to cause minimal injury to the surrounding and underlying vein. I have found IVUS so valuable that I no longer do the procedure without it.

Thank you Doctor.

The more I read, the more I learn that this level of science is over my head, but I continue to want to choose a doctor with whom risks are minimized and efficacy is maximized--as I'm sure all patients do.

I have read so many stories where people are already on their 3rd or even 5th treatment. I don't want to travel that road.

How long have you been using IVUS and how do we know how accurate IVUS is?

Thank you.

The process has come far in such a short time. None of this was even thought about when I had treatment in Poland, 18 months ago or in Melbourne last year. The US doctors are doing a fantastic job to progess the treatment. 12 months down the track - who knows where things will be?