CCSVI in Greece

[sou]

Hi.

Yes, he is willing to do it, but first, his team have to overcome some bureaucratic procedures.

This time, we have used the equipment of a private clinic in Athens. Fortunately, they accepted to "help" us, because of some close relations of the surgeon with the owners. But now, we have to find some permanent solution, because I doubt we can take over their equipment again.

I am seeing a former MEP tomorrow, and we will have the opportunity to discuss what will be the next step to make this operation available to anybody, using equipment of the greek public hospitals, which is better and the procedure will be safer for everybody. I was a little worried, because the clinic where I was operated at had no chest surgery department in case a vein broke down.

Thank you all!

sou

[sou]

Hi.

Sotiris, I think you have been checked for stenoses. How did it go, my friend? I have been thinking of you. Please keep us posted about your results.

Once again, I thank you all for having me in your thoughts this longest week of my life.

sou

[Sotiris]

Hi.

Sotiris, I think you have been checked for stenoses. How did it go, my friend? I have been thinking of you. Please keep us posted about your results.

Once again, I thank you all for having me in your thoughts this longest week of my life.

sou

Hallo sou.
I was checked with a CT-venogram and a triplex of the jugulars. I have not received the official results yet. I expect to receive them on Monday evening and discuss them later on with my doctor. The triplex of the jugulars has not shown a problem according to the sonographer. However I think that they were not collapsing on the upright position, which according to Dr. Simka's protocol is a sign of a potential problem.
I'm sure you understand how anxious I'm right now about the outcome of the tests. I keep hoping that they are going to show something and yes, I will keep you posted. And don't forget that we all would like to know more about your improvements

[Annette]

Oh....OH! I'm sorry I'm skidding in late to your thread.

Just wanted to add my delight at your procedure going so smoothly.

You know how I feel about this.

Wishing you many MANY continued improvements.

[sou]

Hi Sotiris.

Do not take it all very seriously. I have had an MRV of the chest , where the occlusions I had were located at, and they came up "normal". But if you look at the venogram, you will see the blood running in turbulence and the paint going upwards, away from the heart, instead of returning to the heart.

Don't give up. If you are 100% sure you have MS, you can't but suffer from CCSVI.

Good luck, man! Please keep us posted and don't take a negative very serious. Try to look for indication, not proof. The real proof would be a venogram or else, an MRV/CTA or Doppler from somebody that knows how to read them.

sou

[costumenastional]

Sotiris, i sent a pm to you, i m sure you ll get it friend.
Appart from that i wanted to ask you openly if the triplex (which i dont know how ot works, given the fact only very few have mentioned it for ccsvi) checked your azygos as well. Maybe you mean ultrasound doppler? The azygos question goes for the ct scan too.

I am 100% with the above post by Sou, like i wrote in my pm, try to not worry so much if possible. I am trying too...

Wish you my very best for today as i am sure all others do also.

[Sotiris]

[...]Appart from that i wanted to ask you openly if the triplex (which i dont know how ot works, given the fact only very few have mentioned it for ccsvi) checked your azygos as well. Maybe you mean ultrasound doppler? The azygos question goes for the ct scan too.[...]

Triplex is nothing more thatn a nickname for concurrent color flow imaging and pulsed wave Doppler. As far as I know it cannot directly check the azygous but from the haemodynamics of the jugular system one can sometimes conceive if a problem with the azygous vein is present. (At least if this one is Dr. Simka)

[costumenastional]

I see. So, it should take a ccsvi trained eye to diagnose. Thanks for replying. Hope today you have more news when they "read" your CT venography. And you ll take it from there friend.

[costumenastional]

I found Sou's cds VERY useful and i ll take them to a vasc in 2 days time along with some papers. Let's hope he ll get the idea... I sure did. Both ijv and azygos problems are sooo visible.

Thanks Sou. Fantastic job.

[Sotiris]

After a long wait, I finally got the official results. From the CT-scan both internal jugulars as well as the azygos vein look quite normal, i.e. without occlusions or narrowings. The only potential problem that I could locate, is the one I already mentioned in a previous post, i.e. that during the triplex the jugulars were not collapsing in the upright position; they were however about 30% narrower. Any suggestions about how to proceed now?
As a first step, I plan to revisit my MS diagnosis to see if all other possibilities have been taken into account and properly excluded.

[mangio]

Sotiris,
I have a really good paper I found last nite with great MRI's that somehow
I think relate to this story. It's a Neuroradiology publication so I think
it has some relevance. The pictures were really good.

[sou]

Hi Sotiri.

Maybe the best solution would be a classic venogram, to see the flow in realtime, along with the structure. CCSVI is all about flow alterations. Stenoses are relevant just because they induce flow disturbances. I am in favour of a "functional" scan, not just structural.

I had a chest MRV, where both my stenoses were. It came up normal. After having been operated and knew the exact loci of the stenoses, I managed to see them as blur spots. I can't blame the radiologist. it was tough to see and understand the problem. But doppler is a good indication to justify undergoing a venogram. Guess what! That 's what Zamboni did...

Do not ever give up until the answer is backed by sufficient evidence.

sou

[ErikaSlovakia]

After a long wait, I finally got the official results. From the CT-scan both internal jugulars as well as the azygos vein look quite normal, i.e. without occlusions or narrowings. The only potential problem that I could locate, is the one I already mentioned in a previous post, i.e. that during the triplex the jugulars were not collapsing in the upright position; they were however about 30% narrower. Any suggestions about how to proceed now?
As a first step, I plan to revisit my MS diagnosis to see if all other possibilities have been taken into account and properly excluded.

Hi Sotiris, I had 2 negative CTs in Slovakia and 1 negative MRV in Slovakia and couple of negative Dopplers in Slovakia and they knew what they were looking for because I had the "paper" from Dr. Simka from my Doppler in hands.
At the end of story I have one stent in my left jugular.
Good luck!!!
Erika

[costumenastional]

Yes, i d say that Sou is 100% right whatsoever. Do not go down the wrong diagnosis road just yet. Eliminate the ccsvi possibility first with any means possible and take it from there.
I for one, am not 100% i have MS. I only hope i do, cause i really dont like the alternatives. Even so, i ll try as hard as i can to have a 100% correct ccsvi or not diag before i start searching about other diseases. This is why i d say try to get a venogram. I know, it's not easy but i hope will both get there friend.

Also, Erika is the living proof for wrong ccsvi diagnostics. Thank God we have all these people helping...

Hang in there.

[Sotiris]

Thanks for the feedback friends. Actually, I want to revisit my MS diagnosis, only to be reassured that I should be checked again for CCSVI. My doctor proposed me to do a selective venography (if I really wanted to do it), but without a hint towards CCSVI from the tests, I'm yet reluctant to proceed with an invasive technique. However, I am ready to do it even without a positive test if
a) I will be reassured that I do have MS, and
b) the correlation of MS and CCSVI will be confirmed this Sunday