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

Postby Rokkit » Fri Sep 18, 2009 12:35 pm

I think part of it is not everyone believes the stenosis needs to be fixed, they think the body adapts by developing the collaterals and that takes care of it.

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Postby radeck » Fri Sep 18, 2009 12:54 pm

Rokkit wrote:I think part of it is not everyone believes the stenosis needs to be fixed, they think the body adapts by developing the collaterals and that takes care of it.


That would be an argument against the procedure itself, but perhaps not the diagnostics (MRV), which is necessary to see that there are collaterals.

In any event, I just found out that my PPO has denied approval of the MRV.
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collaterals

Postby GiCi » Sat Sep 19, 2009 5:49 am

It is true that, in presence of obstacles to the normal circulation, the body tries hard to avoid damage by stimulating the development of collaterals. It is also equally true that circulation through collaterals is not as good as the original one. Collaterals form in the myocardium in presence of coronary vessels obtructions but the patients still suffer with angina and may have heart attacks. The same happens in the legs where, in presence of arterial obstruction, collaterals may preserve the vitality of the limbs, but the patients still show claudication.
In the case of venous obstructions the efficacy of the drainage via collaterals seems to vary according to their location. Zamboni's group has shown clearly that the venous pressure above a jugular vein obstruction decreased following removal of the obstacle. Evidently, in their cases, the collateral circulation was not good enough to keep the venous pressure inside normal parameters.
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Postby Rokkit » Sat Sep 19, 2009 6:43 am

Gici, that is an excellent post. I'm so glad you participate in this forum.

So it seems to me at this point we can say with certainty that 1) people with MS are very likely to have one or more jugular occlusions, and 2) jugular occlusions create an above normal venous pressure situation which causes the reflux of de-oxygenated blood back into the brain.

It seems like that realization alone should be enough to get the attention of all MS researchers. It's not enough to cause neuros to start referring patients to vascular doctors though because of this thing called the "standard of care." Neuros know that if they vary from the standard of care, they will eventually be sued for malpractice.

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standard of care

Postby GiCi » Sun Sep 20, 2009 3:50 am

Very well put, rokkit!
That's the reason why I said that it will take a long time before what seems pure logic to a three year old does enter into the "standard of care".
Patients themselves are in part responsible of this defensive attitude of the medical profession by suing doctors for everything.
But things will hopen up.
For example, I have persuaded a vascular surgeon in my hospital to persuade a radiologist to undertake the balloon dilatation I need for the reccurrence of the stricture in my right jugular vein. It will be the first liberation procedure in UK.
Because they have no experience with jugular veins, they have asked the procedure to be covered by a cardio-thoracic surgeon and an anaesthetist in stand-by. This should give you an idea of how careful medical people are when adventuring in a new territory.
The procedure is booked for the 14th of October: I will let you know how it went.
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Postby radeck » Sun Sep 20, 2009 8:38 am

GiCi, this is very positive news. Congratulations for achieving it. I hope that it'll be a breeze for this team to fix your jugular problem.
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Postby mrhodes40 » Sun Sep 20, 2009 10:04 am

Congratulations Gici!! :D What a relief that must be to know you have help nearby. I have considered asking my local interventional radiology office to hear my tale and be my local "go to" office, I have been trying to decide if I want to go there or the university in Seattle for more impact...I attempted to find a name by asking the Univ. guy who did my dopplers for an IR name, but he did not write back.

you inspire me to write the letter to the local guys!

Can you see any hope by trying to work from the angle that stenosis should be treated for its own sake through the organisation for vascular doctors? I see the caution in the surgery planned for you, but if they could sign on to the idea that treatment is reasonable for its own sake, that may go a long way to bridging the gap between now and a time when treatment can be shown to help MS.

I am really pleased for you Gici, great job!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Wondering how to approach my neur or gp about CCSVI?

Postby jbro » Sun Sep 20, 2009 2:23 pm

I'm a little lost about what to do next. Should I:
1. First contact Dr. Dake
2. then ask my neur. to approve a MRV and a doppler?

I'm looking for the most convincing way to persuade my neur to approve this. Just hoping for advice/opinions here.
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Postby LR1234 » Sun Sep 20, 2009 2:33 pm

JBro, your neuro does not need to be convinced. You can see dr Dake without a referal, he can help you with the relevant tests
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Re: Wondering how to approach my neur or gp about CCSVI?

Postby CureIous » Sun Sep 20, 2009 3:34 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:41 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Loobie » Sun Sep 20, 2009 3:49 pm

I didn't even talk to my neuro. about it as I knew my GP would do it, and did. If you want to do it, don't let your neuro. get in the way. My family doctor gave me all of my referalls.
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Postby CureIous » Sun Sep 20, 2009 6:19 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:40 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby jbro » Sun Sep 20, 2009 7:30 pm

Thank you all for your insights. I'll start w/Dr. Dake and then my GP For some reason I am feeling very timid, even though that is not my nature at all. I'll post here whatever happens during the next few days.

Question: Would Medicare cover something like this?

Take care, jbro
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Postby Rokkit » Sun Sep 20, 2009 7:39 pm

CureIous wrote:I have an appt with my neuro tomorrow, for what I don't know. Just to chat I guess...


Cool, let us know what he says about your little adventure.
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Postby CureIous » Sun Sep 20, 2009 8:49 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:39 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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