This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, there seems to be enough disagreement here to go around. I hope doctors in my country, who are qualified to make diagnoses like this, are free both to do so, and to use or recommend whatever works, if they can fix it. I hope people with "MS" in this country are able to rely on doctors with proven track records to make determinations, and to act on them.

BTW, MRI can size veins very accurately, as Dr. Haacke has been trying to tell people. Doppler ultrasound (or IVUS) can guide measurement. Much can be measured from an MRI, depending on resolution. Whether one is available, or gets used, can't be predetermined.

If some other kind of impediment is already obvious by venography, CAT scan, or any other way, the presence of a web or septum may or may not affect treatment. It is up to the IR or vascular surgeon, or neurosurgeon or other specialist I may have asked for, or been referred to, to decide on and know how to use whatever armament, regardless of what precious metal it is associated with.

I rely on them to know the appropriateness of MRIs, IVUS, venography, Doppler or plethysmography. I think having the right information is important when choosing my doctor, and discussing my treatment.

The best practices evolve and replace the old best practices. They are a snapshot only, and may last for one procedure or many.

I am still asking questions. I don't want to claim any agenda, or to know any of the answers for anyone but myself.

Let us agree to disagree. I have said what I think.

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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

I absolutely agree with you on this. Right now is still a time of evolution with CCSVI, where the best practices are not entirely worked out and agreed upon among the doctors. I'd like it if the choice of techniques were being made purely based on what is best for the patient.

First really big choice any of us made was whether or not to have the procedure.

Second really big choice was where to have the procedure, since the doctors are all doing the procedure differently, and the different techniques influence the outcome.

It is difficult for me to rely on the doctor to know the appropriateness of various tools and techniques when I have worked hard to learn as much about CCSVI as I can, and I know that there is not consensus on the various imaging, on what constitutes a stenosis, on how to treat the stenosis, and on what the aftercare should be. For other procedures, there may be better and worse individual doctors, but at least there is a consensus on how the procedure as a whole should be done. CCSVI is so new and yet to be fully explored that there is not that consensus.

I am sure I am in agreement with you, 1eye. How could I not be.

Yes, we are asking them to make good decisions where no consensus exists. It seems Dr. Sclafani has led the way with IVUS, and his writing will contribute greatly. I think it is out of my (and most people's) levels of learning, and exposure to the facts, to be aware of all the trade-offs where the doctors themselves can't agree, and where one group of doctors has the reigning government set against another.

In this vacuum (or anywhere else, for that matter), I can't insert myself to give medical advice. But I can point people here and at CCSVI.org , saying

"Read as much as you can."

"Don't act until all your questions are answered, and you feel comfortable that you are doing the right thing."

"Get tested, but be aware why that may not be enough."

"Tell your GP, if you are thinking of having the procedure."

"Don't let people scare you, but remember all the known risks, and that some people have had restenosis, multiple procedures, clots, etcetera."

"Take heart in the fact that even when people have gotten worse, or had very little lasting benefit, they still think it should be part of mainstream medicine. They still think it should be accessible by doctors and patients, not because they have "MS", but because they are human beings."

"There are risks, but there are bigger risks in Tysabri, Gilenya, mitoxantrone, etc."


In this environment, when you pay your money, you take your chance. Try to get the best return on the investment you can, if you do decide to make one.

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