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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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whyRwehere
PostPosted: Fri May 22, 2009 9:13 am 
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I was at the vein doctor today, getting my spider veins done, when my husband's GP phoned to have her do an "echodoppler couleur de veine jugulaire interne et de la veine vertebrale" on my huband. She said after looking at that, the doctor (specialty:angéiologie, médecine vasculaire)could decide whether we should go ahead with the MRV....I hope this is a good first step, and the doctor also printed out the paper of Dr Zamboni first and perused it, so she wasn't just handing the referal over...
Hopefully, she will see something!!
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cheerleader
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PostPosted: Fri May 22, 2009 9:26 am 
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Just a quick warning on the dopplers....both Jeff and Marie's dopplers looked OK because the transducer wand could not get up high enough to see their areas of blockage and reflux. The doppler test is done from the front of the neck and only goes up under the chin...the internal jugulars run all the way up to the base of the brain, and the area of stenosis and reflux in both Jeff and Marie could only be seen on MRV. I'm afraid dopplers may give some false results...
just an fyi-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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whyRwehere
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PostPosted: Fri May 22, 2009 10:31 am 
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Thanks Cheer,
I was thinking it might not show anything, but that is useful information about the other two patients, and I'll point that out to the doctor when my husband goes. At least she might know who to see after her...
(is anyone else having trouble with this form for posting a reply...it doesn't show what I'm writing sometimes).
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whyRwehere
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PostPosted: Tue May 26, 2009 3:56 am 
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I emailed Dr Zamboni and asked him if he knew a doctor in Paris to do the doppler, as I was a bit worried that it needed someone looking for the right signs; someone interested in the research. He suggested a Dr, as he is "one of the best in the world" for this, and I emailed the DR , but have not received a reply. I will try to get my husband's GP to refer my husband to him if 1, the woman performing the doppler a week from now, finds nothing, 2, if she finds something and my husband needs further tests.


Last edited by whyRwehere on Tue Jun 09, 2009 10:59 am, edited 1 time in total.

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whyRwehere
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PostPosted: Tue May 26, 2009 4:09 am 
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UPDATE
Perhaps he is reading this or is on his lunch break, but the Dr just emailed me with the info on how to book an appointment, so that is good news! :D


Last edited by whyRwehere on Tue Jun 09, 2009 11:00 am, edited 1 time in total.

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peekaboo
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PostPosted: Tue May 26, 2009 5:23 am 
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Congrats and best of luck...my thoughts & prayers are with you. holly
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mrhodes40
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PostPosted: Tue May 26, 2009 6:10 am 
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Oh wow.

Please see the "Maries long stanford story" thread. Dr Simka made a commnet on dopplers I pasted in it yesterday...
marie

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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


Last edited by mrhodes40 on Tue Jun 09, 2009 3:57 pm, edited 1 time in total.

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whyRwehere
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PostPosted: Tue May 26, 2009 6:43 am 
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Ohhhhh, frustrating.
We have planned a 2 month long visit home for the summer, and will be leaving just before the Dr's next available appointment. So I have booked for September.
I am tempted to call off the holiday, but my family is very excited about our coming and we would lose the cost of our tickets ( a lot). I am thinking we will have to wait 3 months, but then I'm not the one who is ill.
I have emailed the good doctor, to let us know if he has anything sooner...


Last edited by whyRwehere on Wed Jun 10, 2009 11:40 am, edited 1 time in total.

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mrhodes40
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PostPosted: Tue May 26, 2009 7:01 am 
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why "life is what happens on the way to something else" .... Enjoy the holiday, more will be known by then also. But I HOPE he gets a cancellation and you get to go....
marie :D

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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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whyRwehere
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PostPosted: Tue May 26, 2009 7:07 am 
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Fingers crossed...we may have an appointment on the 8th of June!!! :D :D
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cheerleader
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PostPosted: Tue May 26, 2009 7:34 am 
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whyRwehere wrote:
Fingers crossed...we may have an appointment on the 8th of June!!! :D :D


Wonderful news!!! As Marie and Dr. Zamboni have said, Dr. F is the best in France! His paper on Dr. Z's research is terrific, and he understands what to look for. Great work! Maybe another doc on board...much needed. Hope June 8 works out-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Last edited by cheerleader on Tue Jun 09, 2009 4:21 pm, edited 1 time in total.

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whyRwehere
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PostPosted: Wed Jun 03, 2009 10:35 pm 
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Just an Update:

Went to the vein doctor yesterday and she spent about 20 minutes looking at my husband with the colour doppler, but found nothing unusual. We were not surprised, but we left her with Dr Zamboni's paper and she will send the report to my husband's GP. Fortunately we have the back up plan of seeing the Dr and we are waiting impatiently for Monday (if he still can meet with us). Probably nothing will really happen until September, if the Dr does find anything, but at least we will know more.
Will update again after the next appointment.


Last edited by whyRwehere on Tue Jun 09, 2009 11:03 am, edited 2 times in total.

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whyRwehere
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PostPosted: Mon Jun 08, 2009 8:56 am 
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Further Update:
Got to see the Dr today (he was very kind to find some time to see us!!). So, the "good" news is, that my husband has a problem with his left Jug, and is likely to have a problem with the Azygos as well.
The bad news is that this new "theory" is not recognized in France yet, so until then, it would be unlikely to have anything done. He thinks in about a year, when Zamboni's reports are in, etc, it will probably start to be treated.
We are happy to know the problem is there (he says the left Jug is not even visible), but frustrated by the inability to take action. Can't do anything for the next 2.5 months anyhow, as we are going away, but will be happy to do something as soon as we get back. :!:
Got to go make dinner now...


Last edited by whyRwehere on Tue Jun 09, 2009 11:04 am, edited 1 time in total.

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cheerleader
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PostPosted: Mon Jun 08, 2009 9:06 am 
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whyRwehere wrote:
Further Update:
Got to see Dr F today (he was very kind to find some time to see us!!). So, the "good" news is, that my husband has a problem with his left Jug, and is likely to have a problem with the Azygos as well.
The bad news is that this new "theory" is not recognized in France yet, so until then, it would be unlikely to have anything done. He thinks in about a year, when Zamboni's reports are in, etc, it will probably start to be treated.
We are happy to know the problem is there (he says the left Jug is not even visible), but frustrated by the inability to take action. Can't do anything for the next 2.5 months anyhow, as we are going away, but will be happy to do something as soon as we get back. :!:
Got to go make dinner now...


Why...
thank you for your diligence in following thru w/Dr. F and reporting back to us. I'm not surprised to hear about your husband's blockages. He will be in my prayers.

Go have a wonderful family vacation. Enjoy yourselves, and do everything to keep his blood flowing...mediterranean foods, seafood, olive oil and spices. Fresh air and sunshine, laughter, making love, exercise, and hope. All good vasodilators until he can be treated. This research will continue-
all the best,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Last edited by cheerleader on Tue Jun 09, 2009 4:22 pm, edited 1 time in total.

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peekaboo
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PostPosted: Mon Jun 08, 2009 9:19 am 
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Can't Dr xxxx stent or balloon the Jug using a headache dx and not MS? This is what we are doing in the US. Isn't a collasped Jug dangerous? should it not be repaired? the Azygos is another major player too. it is supposed to return O2 depleted blood from the abdomen up to the venas cava to the heart....To me that is a big deal :(


Last edited by peekaboo on Tue Jun 09, 2009 11:20 am, edited 1 time in total.

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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