I hope a doppler will be a good first step

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

Postby whyRwehere » Mon Jun 08, 2009 10:23 am

Yes, I am considering the headache angle...because he DOES have headaches, but since I can't do anything till we get back, we'll wait for now. When we are back, I will start pushing for some action. Meanwhile, I am still reading about everyone else....the more people who bother to get tested, the more proof, and maybe the sooner for things to happen here!
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Postby whyRwehere » Mon Jun 08, 2009 1:18 pm

Just for the curious, here is the conclusion of the test as translated by google:
Lack of internal jugulire hypoplastic left high and 2 veins SPINAL highly proboables.
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Postby mrhodes40 » Mon Jun 08, 2009 5:00 pm

Why
COngrats!! I'd do as Cheer said and make an effort to keep the blood a little thing and flowing well with supplements and vasodilators until the treatment is approved. CHeck with your won doc on that. ANd also practice good deep breathing --open the chest and get good cleansing breaths regularly, the thoracic pump is part of how the veins drain the head. When you breath in it helps pull the blood through essentially.

can I make sure I understand this thread? You got a yes to see Dr X , a specialist, but at a later date, so you got dopplers from the GP, the dopplers looked like no big deal, but when you did finally see Dr X he saw a jug problem and an azygos one? Is that right?

If so, wow on the dopplers- they don't seem to work that great unless you get a person who understand this interpreting them and looking for the right things. Why if I understand this correctly maybe you should add your story to the treatment thread so we have a record of one more person showing the model to be true............ even though you did not get treated yet? Cheer think so?
Last edited by mrhodes40 on Tue Jun 09, 2009 3:58 pm, edited 1 time in total.
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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Postby cheerleader » Mon Jun 08, 2009 5:18 pm

mrhodes40 wrote: Why if I understand this correctly maybe you should add your story to the treatment thread so we have a record of one more person showing the model to be true............ even though you did not get treated yet? Cheer think so?


Great idea, Marie.
Why- I have edited the thread to say "CCSVI patients' log" Please go ahead and enter your husband's information, so we can have it for the records.

That makes 5 diagnosed at Stanford, and one in Paris. Cure's MRV is tomorrow.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Tue Jun 09, 2009 4:59 am

I'm just waiting to get an okay from the Dr to use his name and the report on the forum...if he says no, I may have to edit his name out.
He's a very nice man, by the way. he seems amazed by the theory, which is why he agreed to start looking at people.
(By the way, i kind of wonder if the other Dr saw something, but used her judgement to say it wasn't important, because it seems to be the accepted idea still that there may be a problem, but that's perfectly fine....which it isn't) :evil:
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Postby mrhodes40 » Tue Jun 09, 2009 5:49 am

i kind of wonder if the other Dr saw something, but used her judgement to say it wasn't important, because it seems to be the accepted idea still that there may be a problem, but that's perfectly fine....which it isn't


Oh my. That could certainly describe the situation with my sonographer too. That is very sad.

*sigh*
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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Postby CureOrBust » Tue Jun 09, 2009 6:30 am

cheerleader wrote:Cure's MRV is tomorrow.
DOH! I should of read that post, before I drove out to the hospital this afternoon. :oops:
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Postby CureOrBust » Tue Jun 09, 2009 6:33 am

cheerleader wrote:... and one in Paris.
Correct me if I am wrong, the one diagnosed in Paris was a doppler was it not?
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Postby Sharon » Tue Jun 09, 2009 7:16 am

Oh, Cure, did you really go to the hospital on the wrong day? I'm sorry, but I was LOL when I saw your post. How many times have we done something stupid like that - thankfully, it is just not us MS'ers, the "others" do it to.

Anyway, good luck today - can't wait to hear your about your test results.

Sharon
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Postby cheerleader » Tue Jun 09, 2009 7:48 am

CureOrBust wrote:
cheerleader wrote:... and one in Paris.
Correct me if I am wrong, the one diagnosed in Paris was a doppler was it not?


Correct...Dr. F in Paris was recommended to Why and her husband by Dr. Zamboni, since Dr. F understands CCSVI (written a paper on it), where to look, and how to utilize the dopplers. Oh, and by the way, go get your MRV today, Cure :wink:
Hang in there, don't worry...keep us posted.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Tue Jun 09, 2009 7:49 am

Cure - have a successful day at the hospital...anxiously waiting to hear what happened.

Holly
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Postby javaneen » Tue Jun 09, 2009 8:40 am

Good luck at your MRV cure! I will be waiting to hear your results!
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Postby whyRwehere » Tue Jun 09, 2009 11:20 am

Yes, Cure, good luck and important update: I would like to make it clear that this is still an unproven theory (although I personally believe it makes a lot of sense and think it is also the way forward), the doctor who saw my husband was not making any promises and is simply helping along the research....a work in progress he says.... so please do not refer to him by name until we have more info...thanks
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Postby cheerleader » Tue Jun 09, 2009 4:30 pm

whyRwehere wrote:Yes, Cure, good luck and important update: I would like to make it clear that this is still an unproven theory (although I personally believe it makes a lot of sense and think it is also the way forward), the doctor who saw my husband was not making any promises and is simply helping along the research....a work in progress he says.... so please do not refer to him by name until we have more info...thanks


Why,
I'm sorry...but I must take issue. At this point it is not an "unproven theory." We have 100% of all MS patients with azygos and jugular vein stenosis. This is all Dr. Zamboni has asserted in his research, and this is a proven theory. He has made no claims as to what happens if these blockages are removed. That is the unknown part. I hope your doctor comes around and continues to test patients for CCSVI. He need not treat them if he is not comfortable with that part of the equation, but he has the expertise to diagnose the problem. And we need doctors able to diagnose this in MS patients in order to document the research. That is how theorum become fact.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Tue Jun 09, 2009 5:33 pm

Beware that Dr D had some issues and skeptism w/ his (dr Z ) doppler procedures...he thought that there were gaps in his doppler scans that could leave speculation...he believes that from the ear level down his doppler were not including this data.

some ms'rs would not be diagnosed and then some "healthy people' would not be dx as well.. so 100% was an issue w/him
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