check out some of my pics

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

check out some of my pics

Postby costumenastional » Thu May 13, 2010 12:13 am

http://www.fightforccsvi.blogspot.com/

these are only some captions from my operation's cds. i wanted people to see what abnormal flow is. this is me you see.
click on the pics and they ll get bigger.

i am so sad that some people are still claiming ccsvi is not important.

PEOPLE, FIX YOUR VEINS.
Last edited by costumenastional on Mon May 17, 2010 4:49 am, edited 2 times in total.
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Postby pmouse » Thu May 13, 2010 5:19 am

I guess you spent some time fixing great pictures.

I am for the fight. Nevrologists in my country are almoust the same as Colin Rose. They ene dont want to see our veins. I know that the donations to clinics is pressuring them not to SEE. But they see and they have bound hands.

I have another plan. I will let them determine the improvements after CCSVI and write it in their clearance. But they wont know about my procedure. So then I would have formal recognition that CCSVI is the point.
Than fight begins.
Last edited by pmouse on Thu May 13, 2010 8:20 am, edited 1 time in total.
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Postby Rokkit » Thu May 13, 2010 7:28 am

Costumenastional, great pics and descriptions! That must have taken a lot of time.

And I read your blog. I love you, man.
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Postby shye » Thu May 13, 2010 1:08 pm

pmouse-
great idea :lol: Let us know the results!
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Postby shye » Thu May 13, 2010 1:10 pm

costumenastional--
nice work
But how are your veins doing now???
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Postby costumenastional » Fri May 14, 2010 2:52 am

Rokkit wrote:Costumenastional, great pics and descriptions! That must have taken a lot of time.

And I read your blog. I love you, man.


I love you too. And i hope you are not a man :)
I love all of you great people.

It wasnt so difficult actually. To be honest i was bored to show everything that went down during op. You can tell by the spelling :)
This is only an example of what could be going on inside us 24/7.
So, people can see and have something done REGARDLESS OF MS.

Shye, i dont have a clue how my veins are at the moment. How could i friend.I am planning to have another dangerous and lethal flebography in a few months time WHATSOEVER. Dopplers are a joke comparing to this.
For me, this is the way to go. No risk, HUGE BENEFIT.

Pmouse, i think you should punch your neuro in his mouth whenever you feel strong enough my man. I think of you everyday. You are a great guy indeed.

I know i will try to make a tv appereance, once i am sure that some improvements i am starting to see are for real ;)

Good luck to all of us.
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Postby thisisalex » Fri May 14, 2010 5:19 am

hey
great pictures!
... but ...
you want to say that your jugular has a circle in it??? thats awesome man!
Is it your opinion, or the doctors'?
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Postby sbr487 » Fri May 14, 2010 5:32 am

costumenastional wrote:some improvements i am starting to see are for real ;)


You made my day!!!!!!
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Postby costumenastional » Fri May 14, 2010 5:38 am

ThisisAlex,
what you see is the flow going down inside the jugular. then it meets some obstacles and then it goes up from a colateral vein which apparently became wider than the actual jugular vein throughout the years. if there was a significant obstacle higher, the blood would flow down from the colateral vein/s. in my case it uses the colateral vein in the opposite direction...
there are some veins all around that drain some blood eventually but the main volume (if one can say that the dye represents the actual blood flow) turns around and hits the upper jugular at the colaterals entrance (or should i say exit?). it s a shity situation of you ask me.

there is no need for a doctor's opinion once you see the actual flow in real time... except if one is blind. not that i wont show this to a vascular surgeon asap....

the problem is that it looks like the jugular is not well formed under the twisting and i really wonder if the ballooning solved the whole mess. i know it was painful enough to do something but there is no after ballooning video in my cd or at least not one i can understand. i was stupid enough not to ask dr Petrov post op since my focus was on identifying some improvements.

he told me without asking him that there was a twisting above an annulus and i think that this captions you see are great. he turned the machine round and round to get it. he is a very cool dude and he knows what he is searching for. when i came home i understood what he ment by seeing all these crap in the cds.

i will undergo another venogram in a few months just to make sure. watching the dye doing all this crazy stuff in my neck was scary. i dont want this to happen again. EVER.

i can only imagine of what others could show to us. while i was there stents were placed simply cause balloons wouldnt open the vein. can you imagine seeing the before and after pics of those patients?

my pics are kind of prototypes i mayst admit. there is flow alright, but crazy flow.
when i get the confirmation from a doc i ll let you know. for now i only know that Petrov ballooned down there. hope he made it all perfect...
Last edited by costumenastional on Fri May 14, 2010 6:54 am, edited 2 times in total.
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Postby costumenastional » Fri May 14, 2010 5:42 am

sbr :)

once i am sure that some improvements i am starting to see are for real...

let s wait a bit longer my dear friend.

Aw, i d really like to notice something that i consider of great importance:

pre op, i could FEEL something to tremble(?) in my lower neck, like little spasms every now and then. i started to notice after i read about ccsvi. wishfull thinking though it was... i was telling to a friend of mine about that weird sensation. like a pulpitation maybe? is this the correct word to use in English?
i asked the radiologist who dxed me with ccsvi in Greece before my trip to Bulgaria. he didnt think it had anything to do with my veins even that it was like bubbles exploding...
guess what? Petrov ballooned my jugulars down there. both of them at the exact same places.
also the balloon dilation high in ear level felt like breaking something i use to feel for many years at the back of my head. it was so familiar it made me smile while i was crying from pain.
anecdotal shit many will say and i agree. but it s MY anecdotal shit ;)
Last edited by costumenastional on Fri May 14, 2010 6:15 am, edited 2 times in total.
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Postby bluesky63 » Fri May 14, 2010 5:55 am

This is great -- your big greek liberation! Love the blog. :-)
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Postby costumenastional » Fri May 14, 2010 6:10 am

thanks friend :) saddly, one has to be bold these days to make a point...

i should say that anyone who doesnt have a blog can send me pics of his/her operation. i ll be happy to host them in that blog of mine for everyone to see.
Just press pause to capture the image, right click and export. This will save the image as a jpg.

Send them to my email whenever you want and i ll upload them.
You can edit the pics using the most simple program ever. Microsoft paint.
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Postby ndwannabe » Fri May 14, 2010 10:15 am

Thank you very much for posting. Hoping for great and sustainable improvements!

I did not catch it - did you have ballooning or stenting or combination?
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Postby vivavie » Fri May 14, 2010 11:16 am

WOW ! You must be exhausted after writing all that! Nice pictures.

When I had the procedure done they could not go into my azigos (3 attempts). I have a stent in the left jug. I feel better but not fantastic. (pain and energy are same as before)

I won only half of my battle. Wish I could find a specialist to look at my MRV without another trip to Europe and a lot of money...

When in Poland the only comment from the MRV doctor was : "it is very similar to what we see in MS people". OUF! I was glad I could have the procedure done the next day and did not ask more questions.

I feel for you!
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Postby cheerleader » Fri May 14, 2010 2:34 pm

...amazing pics. Truly incredible. And your words are powerful...I know you're angry, and believe me, I understand 100%. You're right, I can't say all that I think and feel, because I have to be careful--especially working with a new non-for-profit group that will be taking the CCSVI cause forward. But you go ahead and vent!!! As an MS patient who has venous obstruction and malformation, you have every right. I truly hope you receive more and more health and relief from MS symptoms. Keep healing and keep blogging...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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