Dr. Kirsty Duncan makes a call.

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

Dr. Kirsty Duncan makes a call.

Postby 1eye » Sat Feb 05, 2011 1:56 pm

This morning I got a very nice phone call from Dr. Kirsty Duncan. She told me something I have heard, unsolicited, from most of those who have not seen me since before my Procedure. I didn't prompt it, but the first thing she said was how different I sounded. She said I did not sound like the same person. I have only talked to her a few times.

To get momentarily technical, that is good news to me because I have been worried, about restenosis, and about walking not coming immediately back. I have been worried about my azygous, but now instead, maybe I am getting some breath control. It is affected by the azygous. Things do improve, and they have been sliding downhill a long time. Climbing back up will not be a piece of cake, but that's the direction I might be headed.

I was just pondering (I have more time for that than a lot of people). Someone here said something about Dr. Sclafani being surprised at the difference the Procedure made in people, or something to that effect. Something like "did I do that?"

That might be the explanation for a lot of the push-back from neurologists. Of course, I'm wondering, and I'm sure a lot of you are, why? Why so much skepticism. Skepticism is a healthy, good thing and necessary for self-preservation. But why so much of it, for so long, at so much cost?

I think maybe part of the answer to that is exposure. I remember saying, well if 50% of 'MS' patients have CCSVI, you don't have to test very many to see it. A handful should convince. Maybe the profession is being dragged down that road partly because there is so much momentum (150 years worth), so much ego and money tied in it. But also, maybe partly because they have not been exposed enough to the beneficial results. Some may go into medicine because they are greedy, egotistical, etc. But I think even those who are there for the wrong reasons get enough of doing good, that they can't help but find out, helping people is a better thing than not. To see the results of the Procedure, sure, you have to have an open mind. Perhaps a disadvantage, though, of being on the skeptical side of this argument is that you are not easily exposed to the Eureka times, and incredible joy that happens. So you don't get to see what all the fuss is about, and you don't have a chance to have your mind changed. You might even avoid it.

Just a thought.

Another thought. Another side of that, for somebody like Dr. Duncan: it must do things to your head to see so many results. She meets a lot of people, and it must be quite dumbfounding and perhaps freakish to see people walk up to her after having been in a chair for 10 years. One can see why you might get carried away. I hope we can all keep some of our cool.

pw"MS' can be pessimistic, sour, and easily annoyed. We might be unpleasant to be around. All the more reason that this Procedure is going to acquire an unstoppable momentum. The more pleasant people there are around, the easier it gets to 'pay it forward'.
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Postby Cece » Sat Feb 05, 2011 2:02 pm

www.thisisms.com/ftopicp-100908.html#100908
"holy camoly"
:)

Great post, 1eye.
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Postby eric593 » Sat Feb 05, 2011 2:22 pm

She said that to me too after my treatment even though I experienced no change in my voice or improvements following treament.

I'm not so sure she's a good judge of gauging "voice improvements", especially when she speaks to so many of us and doesn't really have strong knowledge of our voices over regular, long-term interactions. IF there is a change in voice, it could be from so many reasons like relief that the procedure's over, etc. that has nothing to do with the actual procedure's actual physical impact.

Or, I think it might be a little "hopeful thinking" on her part.
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Postby 1eye » Sat Feb 05, 2011 4:33 pm

Definitely not relief that the Procedure's over, on my part. I slept through it, and the band-aid came off in the shower. I might be skeptical too, if I had not heard this from so many others, many of whom are skeptics, but none of whom had heard my speaking voice since before the Procedure.

None of these reports were solicited, and all came unexpected to me (though by now I tend to believe them). I expect lots of things after speaking the first few words of a conversation, but none of them is a comment on the sound of my voice (I'm 57). Dr. Duncan is probably an exception, but I don't think many people anticipate hearing a difference. They look for differences, but I don't think they expect to hear them. She gets to see and hear a lot more than most, I agree.

Some here think of me as just another "true believer", but they may not know that along with my hope for improvement comes some pretty severe skepticism of my own, borne of many disappointments, not least of which is my disappointment with the discipline of neurology as I have seen it in numerous practitioners. I have been more than disillusioned with other kinds of medical practice as well.

Imagine my horror when someone placed a needle into various of my nerves, and pretended to interpret the sounds coming from a cheap audio amplifier and a five-dollar speaker connected directly to the needle, as meaningful in terms of my nerves' 'conduction' ability. I studied electronics for three years, with honours. I know that that whole operation was a very painful fake. People think if they call something a study everyone will be impressed, but I could study your navel and produce a lot more valuable information. Although none that would generate interest. :-)

On the other hand, the guy who finally did diagnose me was a radiologist, and I have seen my black holes and held my films in my hands. I don't like gadolinium, but I have had a lot of it.

Dr. Duncan may be guilty of 'hopeful thinking'. I think all doctors should be. I experienced no change in my voice. I can not tell. They could be totally wrong. I'm only going by what I've been told. In this I am not skeptical. :)
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Postby hannakat » Sat Feb 05, 2011 6:08 pm

It's very interesting to me that Dr. Duncan phones PwMS about CCSVI. Has she made any progress in the battle? I haven't kept up.....
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Postby 1eye » Sat Feb 05, 2011 11:32 pm

I don't even know how she knew I'd been treated (other than perhaps the sound of my voice :-) ). I got her email address when everybody was trying to get her to help with Ms. Farrel, and she bought a bunch of us dinner when we went to the peanut gallery on the hill to see the Great Debate (it's in Hansard and on YouTube). I emailed her about trying to get to see her breakfast meeting, and she said she'd call. I was not expecting it, being as her schedule is so busy with the meeting coming up and her trip to Poland. She explained that she wanted as many MPs and Senators to attend as possible, and as the room really is not that big (she didn't have to explain that we can be a hard crowd to play to), she had to make it un-public. I might go see if there are any press conferences.

I really think it's awfully expensive for a third-world place like this ;-) but we may have an election soon. I would ask every Canadian on Ti'MS' to hold your nose and vote Liberal. I donated $1000 to my brother for his NDP campaign last time, so it isn't just hard for Conservative pwCCSVI. But we have to do something big that they will notice. Every adult family member, friend, caregiver, and twitter follower gets a vote too.
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Postby eric593 » Sat Feb 05, 2011 11:42 pm

I am glad you've had positive feedback, 1eye.

BTW, the Federal NDP has also been very supportive of CCSVI research and testing here in Canada.
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Postby Cece » Sat Feb 05, 2011 11:47 pm

When election time comes, it would be good to put together a list of the pro-CCSVI candidates. Single issue politics! I would normally be opposed to that, but not when it comes to CCSVI.
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Postby concerned » Sun Feb 06, 2011 12:17 am

I'm wont to disagree with you Cece, but since those candidates (NDP and Liberal) are probably more likely to be pro-choice and anti-war, I guess I'm forced to agree.

As a caveat I must say that I have no faith in electoral politics whatsoever or most pillars of modern civilization (or the past ten thousand years of it for that matter).

As the old adage goes, if voting changed anything, they'd make it illegal.
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Postby Cece » Sun Feb 06, 2011 9:15 am

you are a true disbeliever in the political process as well, then! :D

"If voting changed anything, they'd make it illegal" - that's catchy, it might be an old saying but it was new to me. (I am of course in disagreement.)
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Postby 1eye » Sun Feb 06, 2011 10:39 am

concerned wrote:As a caveat I must say that I have no faith in electoral politics whatsoever or most pillars of modern civilization (or the past ten thousand years of it for that matter).


You won't mind then if we give it a whirl?

As the old adage goes, if voting changed anything, they'd make it illegal.


Except, in contrast to all generalizations being false, adages are all old. I thought I'd seen that one voted down...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby scorpion » Sun Feb 06, 2011 10:42 am

Cece wrote:When election time comes, it would be good to put together a list of the pro-CCSVI candidates. Single issue politics! I would normally be opposed to that, but not when it comes to CCSVI.


What exactly is a pro-CCSVI candidate? Just curious.
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Postby 1eye » Sun Feb 06, 2011 10:47 am

Cece wrote:When election time comes, it would be good to put together a list of the pro-CCSVI candidates. Single issue politics! I would normally be opposed to that, but not when it comes to CCSVI.


Here it's easy. They tell you what party they're in. Enough members get in, the leader is Prime Minister. No problem. In this special case, we all like Dr. Duncan, so we vote Liberal. QED
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby concerned » Sun Feb 06, 2011 10:49 am

I think that means an opposition party candidate.

Here in Ontario the PC party uses "Liberation" as political leverage but nationally the liberals use it.
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Postby scorpion » Sun Feb 06, 2011 11:03 am

concerned wrote:I think that means an opposition party candidate.

Here in Ontario the PC party uses "Liberation" as political leverage but nationally the liberals use it.


Wonder if they would hire me to develop some campaign slogans?

"Don't let your vote be in "vein". Vote pro-CCSVI!
"Don't be "concerned". "Liberate" yourself today and vote CCSVI!"
"The pro-CCSVI party will prevail! No "Lyon".
"Don't be patient x out the anti-CCSVIer's!"
and finally:
Injections that sting like a scorpion's bite is what we hate and will continue to fight!!

I know. Thumbs down... :cry:
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