At last...

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

At last...

Postby costumenastional » Wed Mar 24, 2010 12:25 am

My non ccsvi specialist radiologist told me that i am a serious ccsvi case, if that makes sense.
Both my jugulars seem to be totaly stenosed and he told me that it was just too obvious for one to miss.
I will take it to a vasc surgeon somehow cause a venogram is needed in order for the azygos to be checked too.
I personally think that the problem is only in the jugs cause my "MS" lesions are in the cervical spinal cord. Dr Sclafani told me BEFORE i had the doppler that jugular vein problems can lead to MS lesions in the cervical area.
Surprise surprise, he was right!

Anyway, take it localy if possible. You might get lucky.

Good luck to us all.

Zamboni, i love you for ever.
Last edited by costumenastional on Wed Mar 24, 2010 3:32 am, edited 1 time in total.
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Postby lucky125 » Wed Mar 24, 2010 3:23 am

Congratulations on your obviously stenosed veins! Did you ever think that a diagnosis would be worth cheering about?!?

My ultrasound showed significant reflux in the IJVs. That was enough to buy me the venogram + angioplasty. They checked the azygos once they were in there. It was clear. Remember, venogram is the gold standard!

Good luck!
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby costumenastional » Wed Mar 24, 2010 3:31 am

Nicole thank you. Venogram is what i wanted to say :)
I ll fix it right away. I am having trouble keeping my mind straight today...
In fact there is simply no point for MR Venography.

Well, in my case there was no reflux since he just couldnt see ANY flow in the middle part of the veins. NADA. This is why he didn't make the exam last over 10 mins i guess...
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Postby whyRwehere » Wed Mar 24, 2010 3:46 am

I look forward to hearing the results of your venogram...is it possible to ask them to check as much as possible and not just the azygous and jugulars?
Good Luck,
Why
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Postby costumenastional » Wed Mar 24, 2010 4:25 am

Hey Why, i ll take what i can get for starters since i haven't spoke with a vasc yet. But i can promise you this: i will wait until i can do it in Greece. There are some great docs around and i trust that they will at least check my azygous and hemiazugous along with the jugs.
Dr Sclafani has already seen various problems in smaller veins but he doesnt know what to do with them whatsoever. A baloon angio would probably not last and there is no stent available. So, it s gonna be baby steps for me this time. First time was bombing my poor self with campath upon dx. No more mistakes for me.
Last edited by costumenastional on Wed Mar 24, 2010 4:35 am, edited 1 time in total.
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Postby whyRwehere » Wed Mar 24, 2010 4:28 am

yes, anything helps (except drugs it seems). Good Luck again. I'll be watching this space...
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Postby sbr487 » Wed Mar 24, 2010 5:34 am

vein stenosis?

time for you to bloat with happiness :D
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Postby fernando » Wed Mar 24, 2010 5:40 am

Congratulations my friend!

And thanks, because we all learn from these experiences.

Fernando
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Postby Donnchadh » Wed Mar 24, 2010 7:50 am

Can you get the liberation procedure in Greece?

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Postby costumenastional » Thu Mar 25, 2010 9:43 am

I will try to do it here. I dont know anything for sure. I only know that i do not want to travel abroad for follow up and this needs to be done asap.

I am convinced that everything can be done here.
I will let you know when i make it.

Everyone, please try to go local. IT CAN BE DONE.
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Re:

Postby drsclafani » Fri Feb 24, 2012 10:28 pm

costumenastional wrote:I will try to do it here. I dont know anything for sure. I only know that i do not want to travel abroad for follow up and this needs to be done asap.

I am convinced that everything can be done here.
I will let you know when i make it.

Everyone, please try to go local. IT CAN BE DONE.


About five per cent of my patients are coming from Greece. I must say i am not pleased with what i have seen so far. Of course most of my patients have not had a satisfying outcome and there have been some brutal problems.

Fortunately, i have a wonderful colleague in Dr liasis who is supporting me
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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