Results from local vas surgeon today Im goin postal

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

Results from local vas surgeon today Im goin postal

Postby kc » Sun May 02, 2010 1:00 pm

Hi.

I am going to try it, going local that is. I am trying to prepare myself in case I get laughed out of the office.

This site has become so big, it is hard to find things.

Here is my ?: What papers/research should I bring in?

I have favorited so many personal sucess stories, but not as many "hard core" studies. (I realize that there is not really too many hard core studies).

What would people suggest I bring in?

kc 8)
Last edited by kc on Tue May 04, 2010 2:15 pm, edited 1 time in total.
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Postby PCakes » Sun May 02, 2010 2:08 pm

hi,

This is a link to Joan Beale's / Cheerleader's facebook 'facts' page..
loads of info there.. good luck!

oops.. here it is again.. properly
http://www.facebook.com/notes/ccsvi-in- ... 3843017210
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Postby cheerleader » Sun May 02, 2010 2:19 pm

Glad you're not going postal...KC!

I suggest bringing in Dr. Zamboni's original CCSVI in Multiple Sclerosis paper--
http://jnnp.bmj.com/content/80/4/392.full

As well as printing out internet links to Dr. Mark Haacke's MS-MRI site:
http://www.ms-mri.com/

and D. Zamboni's many research papers-
http://www.fondazionehilarescere.org/en ... zioni.html

You don't need much...and PCakes, the page you linked was written more for patients, not doctors.
hope this helps--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Sun May 02, 2010 3:08 pm

ok.. every bit you do is helping in so many ways (#10 :wink: ) just press.. 'mute'
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Postby kc » Sun May 02, 2010 4:32 pm

Thanks guys for replying, I will use those exact links. I have been fretting over this for 2 weeks now. Now let's hope I am convincing and not appearing too crazy.

kc :)
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Postby kc » Tue May 04, 2010 12:57 pm

Ok, Now I'm going postal.

Just got back from the local vascular surgeon's office.
As soon as the dr. walked in I knew it wasn't gonna be good. He didn
t look me in the eye.

So he began to explain to me why I have purple painful legs/feet. (Don't think I didn't do everything I could to make them look the most purplish they could). Well I let him go on about arterial spasm. Then I whipped out my paperwork and said "I think this is what is wrong with me". He held the paperwork and then gave it back. I then gave it back to him. He kept talking about arteries and I kept saying "My arteries are fine"

He then asked what my former occupation was and when I said I am/was a respiratory therapist he snickered. I did come across as a know it all. He said that this is all way too new and it all has to be done in a study. And ballsy me said "I don't want you to do a study, I want you to do me"

At this point he wheeled himself across the room with his back to the wall. So I grabbed the paperwork cuz I knew he was just gonna chuck it once I left. I figured I might as well take it so I don't waste ink.

I put my shoes back on, and was getting ready to go. And as a last ditch effort on his part he said I could go and have a doppler on my jugs. ("but they would probably look normal anyways")

He then took the sheet which were Simka's instructions on how to scan.
He said that his xray tech would like to read about it. Well I am happy for the xray tech.

We left.
The craziest part is, I don't feel like a fool. I will get this done. :twisted: :twisted: :twisted: :twisted:

kc

Probably did help me that I watched Irishbear 76's latest video from today.

kc
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Postby Donnchadh » Tue May 04, 2010 2:27 pm

The more I think about this, the more I am convinced of the importance of going "local."

Dr. Simka is doing wonderful work in Poland, but realistically how many out-of-county patients can he handle? 300, 500 a year?

I have read estimates that there are between 400,000 to 500,000 "MS" patients in the USA alone. If anyone has more accurate figures it would be appreciated.

The waiting lists are getting longer and longer as more and more "MS" patients hear about CCSVI and take the next step to seek treatment.

The actual liberation procedure is well within the expertise of a competent Interventional Radiologist (IR); obviously a through grounding of CCSVI is needed. But IR's are constantly expanding their procedures to new areas, so I am not surprised that they are more open to something out of the accepted neurological dogma. Diagnostic CCSVI testing is very difficult area as there's a lot of skill is needed to determine whether there is a venous problem; that will be corrected in time as radiologists gain experience.

Admittedly it is frustrating now trying to track down a IR or vascular surgeon competent enough to perform the liberation procedure; however when faced with the reality of 1 or 2 year waiting lists it's far more likely to find someone "local" first before your number comes up.

The payoff for a "CCSVI pioneer" is to be treated now. You have to realize that most people haven't heard of CCSVI yet and the treatment for it. That will definitely change as the word spreads via the internet and through person to person conversations. When that happens, there will be a huge surge in demand for treatment. I wonder many IR's there are in the USA; the ratio of possible patients versus doctor's is totally lopsided.

I would not be surprised if a version of triage would be necessary to be implemented: patients in the worst stage treated first? or the youngest, since they would potentially have a longer productive life span? or patients just starting to show signs of "MS"? or rich people willing to outspend other patients?

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby bestadmom » Tue May 04, 2010 2:49 pm

Dr. Sclafani told me there are 6000 IR's in the US. If there are 500,000 pepole with MS, each doctor has to liberate 83 people. It would take 3-4 months to treat them all if only one patient was treated per day/5 days a week.
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Postby Cece » Tue May 04, 2010 3:25 pm

How busy is an average IRs schedule? Would they be able to fit in an extra three-hour venoplasty procedure every day? And aren't there specialties even among IRs, so that some would be more inclined to this work and others less inclined? But honestly these are hurdles for after this is proven...which is a big enough hurdle of its own. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Rose2 » Tue May 04, 2010 8:38 pm

How busy are IRs?
I don't know. My dear friend had an aneurysm on a Sat. Nov 2009. taken to the best hospital here known for its emergency neuro. He had to wait until Tuesday because these guys ( a team of 4 or 5 I think) were just swamped. My friend could be kept in a coma on drugs but some emergency traumas cannot wait. So that may be part of the situation? They have an unpredictable sched. but I am sure we are all willing to wait.
My question: If an IR is comfortable lacing all over the brain to place stents and coils, what is the intimidation of a regular old jugular?
I don't understand it and believe the hospital criterial for the dept dictates what the cannot do. maybe? dunno. just thinking. Rose ;)
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