"The MS Society believes people with MS who have travelled outside of Canada to receive CCSVI treatment
should be allowed post-treatment care and follow-up from the health care

system," spokesman Stewart Wong said in a statement. "We feel the

health of the individual returning from outside of Canada is critically

important.” ?!!

When did the MS society decide that patients who go abroad should be treated for complications at home? Six months ago? When the first
casualty happened? We know that people have been turned down for treatment,

though not all. Every news article has the taste of 'fantasy" about it,

regardless of the few sprinkles of decent remarks they guardedly toss our way.

The truth is that until the last ounce of truth can be squeezed out of reality

the MS society and all but a very small handful of neurologists will milk the

negative press regardless of what is at stake. They are still trying to rely on

the "diminished capacity" of PwMS to scare us from proceeding full

speed in gaining respect for the procedure as well as the doctors who provide

it. The literal truth is that if the MS societies in both the United States and

Canada had not proclaimed the entire theory of venous insufficiency in this

disease just one of a long line of “snake oil” treatments, credibility would

have been given a long time ago. Their immediate response was a little

impetuous and premature in my opinion. The first statements at all were

condescending and patronizing. Rehearsed and angry might be better adjectives

in this case.

That responsible trials or studies are needed isn’t questioned. That the standard of approval is higher
than any other angioplasty to date is unfair and unnecessary. The goal is obviously

procrastination, not validation. Dr. Freedman took this opportunity to

grandstand again by saying that “this is certainly not the first death or the

last” related to the angioplasty procedure. What he failed to address is the

fact that “proper” studies could have been far enough along to have meaningful

answers and persuasive reasoning for providing the treatment in Canada.

Angioplasty for clogged arteries is nothing new. The argument that veins are more

fragile or somehow not as suitable for catheter insertion is blatantly absurd.

Because it is not against any rulings in the US to have the procedure, some people think that we have it made. Nothing could be further
from the truth. It seems we are more willing to accept the procedure the way it

stands right now. There are studies being conducted in the US, but private

practice doctors have to be concerned with closing shop for want of IRB

approval. Private messages and phone calls to friends is still the best way to

get treated unless you go to New York or California. I don’t question their

clinic protocol or services, but it calls into question the capabilities of

physicians who are not affiliated with these groups. Internet chatter reveals

that there is dissention among their ranks also. People who have been

undertreated are afraid to speak out openly because they don’t want the wrath

of people who had more success or symptom improvement. There are several points

I have brought up from time to time concerning the way doctors differ in their

approach to angioplasty. The use of stents and the materials they are made from

is one bone of contention that sheds at least some light on in house differences

of opinion. Since we can’t be above board in the manner we find a good doctor,

the opportunity for abuse is heightened. The same insurance company may pay for

one client, but not the other. We talk about insurance codes in the same way we

talk about various brands of canned goods. Medicare and Medicaid coverage may

vary substantially from state to state and patient to patient. The cost of the

procedure has been reduced to who you know rather than what you know. Now we

are doing the canned goods comparison shopping again.

After hearing the news about the death of an Ontario
man Dr. Freedman said, “People are reaching for the magic cure. They want relief of

their symptoms badly enough that they’re willing to take the risks. And the

risks, we’ve been saying, are significant. How many places are willing to take

Canadians’ money because they can?” Canadians don’t need to leave the country

to get fleeced, just freed. It certainly isn’t magic. As happy as I am with my

recovery, it has been painful and difficult to coddle leg and arm muscles to

perform in a way they have been unable to do for a decade or more. I have to

learn as I go because there are no guide sheets dispensed as you leave the hospital

or clinic post procedure, particularly if the improvements are dramatic as mine

have been. It was more than a small adjustment for my body to quickly beginning

to breathe, hear, smell, see, walk, and think normally again. I was pretty much

on my own and glad that I didn’t listen to others who said there really weren’t

any restrictions or post op care to worry about. Common sense told me better, yet

that is the risk one takes when there is no path to follow.

Janet Heisey was quoted in
the Winnepeg Free Press as saying, "For some reason, neurologists have

decided to try and make this a shadowy thing, and scary, and inject a lot of

risk into the idea," she said. "It's really not a risky procedure.

... I think they're trying to make an issue out of scant facts." Well said, Janet, yet only the tip of the

iceberg. Neurologist Dr. Jock Murray said that Mahir Mostic would have been treated differently if had been

treated for his clotting problem at home. Why then didn’t he get that

treatment? He tried.

Dr. Murray said the procedure is relatively untested and urges
patients to wait until more details are available.

"Patients should not access the medical tourism about this
issue," he said. "They should wait until there's more research to

show the proper method of doing this and whether or not it has any benefit, and

what the risks are.” How would he propose to learn any of this as long as the

procedure is treated like a bastard at a family reunion?