What's the problem? and what I did about it

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

What's the problem? and what I did about it

Postby mht220 » Tue Mar 02, 2010 6:26 am

hi,

(please read both paragraphs and tell me what you think)

I went to my doctor (apparently he hasn't heard of CCSVI) and (long story short) said I think there's something wrong and want to be sure about everything in my body especially the veins leading to my brain and being a nervous and shaky person I am, he thought it would be good to reassure me that it's the MS and nothing in addition to it, SO now I have an appointment to diagnose THE veins by MRI on next week. "Brain MRI angiography" that's what he wrote, is that it? will it show CCSVI? at least I'll know if I have that blocked vein, I'll worry about operation later.


I want to know what's the problem why shouldn't anyone act on his/her own, I mean for all I found out there's one or more blockage in the veins and any blockage in any vein in human body should be removed, right? why does it matter if it's related to MS or not? (of course I'm really happy, and DO believe it's a big step if not the cure) anyway what's all th fuss about "Known Risks" or "The dangers of false hope " or "This is experimental" ... etc. ????

NO VEIN SHOULD BE BLOCKED IN HUMAN BODY, MS OR NO MS


sorry if I shouldn't have created a new topic, I just couldn't figure out what keyword to search for

PS: MS 8 years, avonex 5 years
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Postby magoo » Tue Mar 02, 2010 6:46 am

I would print out the protocols and get them to the imaging dept. prior to your scans. I think you also need the MRI to cover your neck to detect CCSVI. Now that you have the go ahead, I'd make sure the doctors know more about CCSVI and what they are really looking for. Get the info to them ASAP. I'm sure you will get some replies from some others who are more informed than I am. Best of luck:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mht220 » Tue Mar 02, 2010 7:51 am

I've asked an other doctor as a anonymous person who's only curious, they said "Brain MRI angiography" will cover the whole veins from heart to brain so I assumed it includes neck too (is that right?).

I will tell them more about CCSVI and show them all PDFs, Videos but after the result, I'm afraid mentioning "it's a cure to ms" or something like that be too much and face stupid problems I have been reading all over Internet, so I'll tell them after the results
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Postby magoo » Tue Mar 02, 2010 8:08 am

I don't know the answer to your first question.
If the techs don't know the protocol and/or what they are looking for it will probably be missed. I would recommend telling them. But, you certainly don't have to tell them it's a cure for MS! That has not been proven.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mht220 » Tue Mar 02, 2010 9:12 am

why missed? they would be looking for a blockage, that shouldn't be so hard,... I don't know, I'm afraid relating it to MS be bad, make situation complicated and not quite welcome, ... I'm confused

thanks for your answers
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Postby sou » Tue Mar 02, 2010 10:39 am

Mine were both missed on MRV because simply the radiologists had no experience or they didn't want to see them. After the operation, since I knew where the problems were, I saw them both. It is complicated...

I presented the blockages as a symptom/result of my MS. You need a little diplomacy. I told my vasc surgeon that I want him to scientifically answer whether my MS has caused CCSVI or not. Be it negative or positive, the answer should be 100% supported by EVIDENCE.

The evidence showed 2 severe stenoses and since found, why not fix them? Of course, he had studied all papers beforehand and he said that it was more likely an additional causative factor, rather than a result of MS.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby mht220 » Tue Mar 02, 2010 12:55 pm

So I guess have to somehow tell them to focus on the neck, not to miss them

or persuade a doctor or a radiologists or anyone (who can do it) for an MRI specifically on my neck, because I'm beginning to think maybe "Brain MR angiography" isn't quite right for my CCSVI and might not show it

Either way I'm not going to tell them the reality or maybe even it's relation to my MS, it makes things complicated. Not before I have the proof about my stenoses, then I'll have something to say!

If I only was sure about this "Brain MR angiography" thing.
I am determined about it and I will not be stop easily

thanks, hope you'd be ok
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Postby thisisalex » Tue Mar 02, 2010 1:07 pm

MRA (MR angiography) shows only arteries, but not veins. and only in your skull but not in your neck. (in Europe at least)
What you need is an MRV (MR venography) in your skull and in your neck

And its not enough. It must be looked for the flow in your veins (called flow quantification)

please give them the protocol, they have to know what to look for
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Postby mht220 » Tue Mar 02, 2010 10:15 pm

thisisalex wrote:MRA (MR angiography) shows only arteries, but not veins. and only in your skull but not in your neck. (in Europe at least)
What you need is an MRV (MR venography) in your skull and in your neck

And its not enough. It must be looked for the flow in your veins (called flow quantification)

please give them the protocol, they have to know what to look for


thanks, it was quite a clarification, I have to go to my doctor and see what I can do

thanks
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Postby mht220 » Wed Mar 03, 2010 10:01 am

hi,
Again, I went to a doctor (an old friend) and said I want to check my jugular veins (IJV) in my neck and my SVC, and I did briefly told him about IJV narrowing in MS patients.
So he gave me a piece of paper (MRI center won't do it without a doctor note): "MRV on my neck and SVC" apparently flow quantification is also done when it's MRV, so he said. Is that the right thing? (I'm paying for it, since it's nothing official, no insurance) so will it show it? will CCSVI be shown in the images?
I mean will images using "MRV on my neck and SVC" have CCSVI in them? and next would be finding THE narrowing(s) in those images?

thanks
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