Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Cece » Thu Dec 02, 2010 8:25 am

Lydia_S wrote:Hi,

I am Lydia I’m from Greece and my boyfriend has MS. I’ve been reading this forum for quite a long time. I haven’t joined you sooner, because my English aren’t very good.

We’ve been trying to understand ms and after a lot of reading and talking to people we were both convinced that ccsvi must really have something to do with ms. So he did the ultrasound. Left and right IJV are OK. The doctor suspects there might be something wrong with the azygous vein so he asked him to do an angiography. We’ve scheduled to do so within this month.

My boyfriend has lesions mostly in his spine and I think that he would be categorized to the Primary Progressive. I’ve read Dr’s Zamboni protocol and I’m afraid that he belongs to pattern D. That he will have problem with the azygos and lumbar veins which can’t be fixable, at least until now.

I was wondering if there is someone who had problems only with the azygous vein, because almost all of the cases I’ve been reading had also problems with the IJV. I would really appreciate your opinions and your experience.

Thank you all.

(I think my English are coming back to me…it took me a while to write this…but I did it!!!)

Welcome Lydia. I can't recall if we've seen anyone with azygous only issues but we've seen nearly everything, so I think probably yes. It's also possible that there would be something in the jugulars that the ultrasound missed. A lot of times when the doctor gets in the veins it is not the same as when the imaging beforehand led him to expect.

Best wishes and let us know how it goes when he gets the angioplasty done! :)
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Postby Lydia_S » Thu Dec 02, 2010 8:37 am

Thank you cece so much for your immediate response.

I hope you are right..

But please tell me if i have understand it correctly. Cases that are categorized to pattern D are the cases that have problem only with the azygous and for those cases ccsvi surgery doesn't really help... :?
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Postby Cece » Thu Dec 02, 2010 9:43 am

Lydia_S wrote:Thank you cece so much for your immediate response.

I hope you are right..

But please tell me if i have understand it correctly. Cases that are categorized to pattern D are the cases that have problem only with the azygous and for those cases ccsvi surgery doesn't really help... :?

No, that's incorrect.

If there is a problem with the azygous, it can be ballooned. Proper blood flow can be restored. You'll want to make sure the doctor he is seeing is one of the ones who seems successful at treating the azygous.

Zamboni found that the azygous was least likely to restenose, so that is in your favor as well. :)
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Postby Lydia_S » Thu Dec 02, 2010 10:53 am

Thanks again!

The worst scenarios where in my head from the moment i heard the doctor's diagnosis

I hope that's the case :) I'll write as soon as I have news

(any way i believe that there are more at the subject of veins, maybe in the near future more veins will be checked ..)
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Postby cheerleader » Mon Dec 13, 2010 10:49 am

HAPPY 2 YEAR ANNIVERSARY to this thread and to all who've been along on the journey.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby newlywed4ever » Mon Dec 13, 2010 7:05 pm

And, THANK YOU, Joan!! It's scary to think where we'd be without YOU!
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Postby L » Fri Dec 24, 2010 8:45 am

Lydia_S wrote:Thanks again!

The worst scenarios where in my head from the moment i heard the doctor's diagnosis

I hope that's the case :) I'll write as soon as I have news

(any way i believe that there are more at the subject of veins, maybe in the near future more veins will be checked ..)


Lydia - does this doctor have experience with CCSVI? If not then this may well be the reason that no problems were found with the jugular veins. It seems to be very important to find a doctor with plenty of experience or one who has trained with a doctor with plenty of experience. Like Cece said, a doctor must also be specifically experienced with treating the azygous vein - it seems that many doctors treating CCSVI are under treating here.
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Postby L » Fri Dec 24, 2010 8:45 am

newlywed4ever wrote:And, THANK YOU, Joan!! It's scary to think where we'd be without YOU!


Yes, thanks Joan, thanks so much.
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Postby Lydia_S » Tue Dec 28, 2010 1:37 am

He hasn't done the procedure yet, just the ultrasound. The doctor we addressed for the ultrasound is the most experienced at this time. In Greece, such and in other countries I suppose, there aren't many doctors from which you can choose. We've heard that there is 1 good doctor for the ultrasound and 2 that do the procedure. The choices are narrowed...and I am not convinced for their experience. I can't say that they are very experienced or furthermore experts in azygos or CCSVI in general (I guess nobody is at this time). I'm not blaming them, at least they are trying to find out something new and help...
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Postby arabia » Mon Mar 14, 2011 1:45 am

there is usefull information for arabic reader in this source



www.arabia-ms.com [url][/url]
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Postby pauly » Thu May 05, 2011 4:31 am

Hi all,

I'm new here on this forum. My name is Paul and I'm 39. I have MS since 2006. I am living in the Netherlands with my wife and two children.
I had some trouble with my legs and I was extremely tired the whole time, had no energie left.

On the 26 of April I had my scan in Bruges ( Belgium ) and on the 27 of April I had already my treatment performed by Jan de Letter MD. The waitinglist was 3 weeks. After the treatment my wife noticed that the spasmen in my legs are gone. And a few days after the treatment my energie level was rising.

Now after one week I still have the idee that things are getting better.
I will let you know.

greetings Paul
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Postby Cece » Thu May 05, 2011 9:38 am

Welcome, Paul, and yes please keep us updated. The procedure made a difference for me too. :)
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ccsvi

Postby shucks » Sat May 07, 2011 7:06 am

I am a complete newbie, and read the newbie sticky, and don't want to do anything wrong, but this is the first ms group I've joined.
I had ON in 2004, and an neuro-optimoligist told me it was a ad case, but it should resolve its self without treatment. I was a first year law student and didnt have insurance, so nothing was cool with me. Fast forward to a couple months before my 30th birthday, december 2010 I get up to go duck hunting one morning and though it's cold, my left foot never thaws out. With in a week or two, it was in my right foot, and has now climbed my trunk to my mid chest. I notice lherrmitte's too. As an avid outdoorsman, my dr. tells me at that time that it has to be spinal, but to rule out ms I need to have an MRI of my brain. It comes back clear. He decides to get the entire spine a couple months later, and that one comes back as a single lesion "characteristic of MS". My doc sends me to a spinal specialist, who sends me to a neuro that he deals with a lot. This has been a six month process and now my fingers are numb too. This neuro tells me that it is ms, but only in my spine. He sees what he believes to be 3 or 4 other lesions throughout my spine, and none on my brain. My ON eye still bothers me for a week or so a year, but I still seem to have all of my strength on the numb limbs. My NMO test has been out for 2 weeks and i'm scared to death.
Are there any studies in relation to NMO and CCSVI? and if what I have is MS, that has progressed steadily over 6months, is now the time to get treated and tested for ccsvi if it's going to happen?
I know this is long, but I'm in the middle of freaking out and I am not confident in any local neuros, and am scheduled to leave my home in Mytle Beach to go to Duke for a second opinion at the end of the month.
Any advice as to this procedure from those who had it early would be really appreciated. I have lurked around here for a little while, and read this thread, but didnt see anything on point.

Thanks guys.
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Postby Cece » Sat May 07, 2011 7:16 am

You might get more responses if you post in the main area, not on this sticky.

I know there was a patient, TMRox, who had transverse myelitiis that was improved after CCSVI. I am not sure about NMO.

My opinion is that if you've read and understand the research and pluses/minuses to CCSVI treatment, it's better to get treated sooner than later. Lesions of the spine have a big impact. If insurance stops covering this, it might be a wait of years before it is proven and is covered again. It's simple enough to get tested and then, once you know you have a malformation, it was fairly simple (for me at least) to want that malformation fixed.

In my case it was two bilateral jugular stenoses (one 100%, one 80%). My worst MS symptoms were fatigue, cogfog, and vision issues. I can say anecdotally that I have had significant improvement and am so glad I did this.
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CCSVI Information Day

Postby emholtzman26 » Mon May 23, 2011 9:19 am

If you live in or around NYC there is an opportunity for MS patients and their caregivers to attend a free day of education on the CCSIV procedure as well as meet other patients who have gone through the procedure, and the doctors involved. Here is a link with further information and to RSVP: www.ccsvisymposium.com/ms-patients
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