Hi all, Leetz asked me to post her MRV Pics

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

YES!!!!

Postby leetz » Tue Jan 12, 2010 5:47 pm

IT IS AMAZING AND I AM VERY EXCITED!!! YEP THE FLAT VEIN WAS BROUGHT UP...not too sure though YET!!hoping one day for a venogram...let us pray...funny how we are want stenosis....lol...for me MS is alot worse than alot of other things!!!SEE A SPECIALIST----NOT ONE THAT IS ONLY FAMILIAR WITH NERVES!!!THAT my friends is NOT going to help...VEINS VEINS VEINS....or just ask Mark lol......
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby dialed_in » Tue Jan 12, 2010 7:36 pm

Awesome! You're one HUGE step closer now.
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my neuro

Postby leetz » Wed Jan 13, 2010 11:56 am

neuro was infuriated that i went and got tested for this "experimental" treatment...

QUESTION: isn't being put in a clinical trial "experimental"???????

my feeling's were very hurt to say the LEAST....
what do you think???
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: my neuro

Postby CureIous » Wed Jan 13, 2010 12:05 pm

leetz wrote:neuro was infuriated that i went and got tested for this "experimental" treatment...

QUESTION: isn't being put in a clinical trial "experimental"???????

my feeling's were very hurt to say the LEAST....
what do you think???


Lol@ "infuriated". What, that you got scanned? Whoopee doo. You didn't get treated anyways, just scanned. Trust me, he'll get over it. Or she, either one. What, he's mad cause you got a vein problem that possibly needs fixing? Cry me a river. Seriously. Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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I know mark...

Postby leetz » Wed Jan 13, 2010 12:13 pm

GO figure.......imagine the response if i get treated!!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby ozarkcanoer » Wed Jan 13, 2010 12:15 pm

leetz,

I don't understand why your neuro thought getting tested for CCSVI is such a bad thing to do. MRI/MRVs are done on a regular basis. It is YOUR body and your money ! Your neuro is supposed to be working for you not getting mad at you.

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Postby alexth14 » Wed Jan 13, 2010 9:16 pm

Good for you Leetz....Your neuro maybe be even more upset down the road when your stensosis is treated and you no longer need his services. :D Good Luck!
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Postby Mechanicallyinclined » Wed Jan 13, 2010 11:28 pm

So your neuro thought it was okay that you have a vein that was shown to be too narrow? That sounds pretty stupid! If a vascular doctor tells you that your vein is too narrow and his/her recommendation is to correct the problem that sounds like a logical thing to do. What the heck does a neuro know about veins?
You see, once you have MS, it seems like the neuros want to own you. In this situation you could have some other health issue creeping up on you and the neuro's are the experts on your TOTAL health? I don't think so! We have specialists in different fields for a reason.
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hi all

Postby leetz » Thu Jan 14, 2010 1:58 pm

thanks for your support as usual...i will be on top of this in the long run i am going to do what i want to do!!!!!

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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TO THOSE

Postby leetz » Wed Jan 20, 2010 7:33 pm

hi everyone! left too narrow...right???unsure about flattening must wait for venogram...soon with updates...when i know so will you...bet...thank you everyone here...to support one another really help's us all through. well at the very least it gives us that can't do what we used too alot of reading....GOD BLESS!

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: TO THOSE

Postby CureIous » Wed Jan 20, 2010 10:59 pm

leetz wrote:hi everyone! left too narrow...right???unsure about flattening must wait for venogram...soon with updates...when i know so will you...bet...thank you everyone here...to support one another really help's us all through. well at the very least it gives us that can't do what we used too alot of reading....GOD BLESS!

LEETZ


Heya Leetz! So let me get this straight, they are giving you a venogram? That is great, they don't usually do that apart from a procedure but it really is the final say so on what is going on in there. If I could post mine right now it would blow you away. :) Keep us posted!!!

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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so sad...

Postby leetz » Thu Jan 21, 2010 6:15 pm

really does not make sense to me...had venogram from vascular radiologist who is the head radiology at a major hospital here in ny and they saw NOTHING...i just got released from the hospital...even worse my vascular doctor talked on the phone to Dr. Dake before the procedure...groin hurts neck sore...but no CCSVI here...i am devastated and do not know what to do next...my vasc. radiologist really wanted to find something but found NADA!!!too many tears today...i have cried all day/night...hopeless now...words cannot express how i feel...i really thought i had this...now i am in f.,k it mode...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Cece » Thu Jan 21, 2010 6:33 pm

leetz, you have my sympathies, here's hoping it's a false negative.
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Postby Lyon » Thu Jan 21, 2010 7:07 pm

.
Last edited by Lyon on Mon Nov 21, 2011 7:54 pm, edited 2 times in total.
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strange..

Postby leetz » Fri Jan 22, 2010 1:51 pm

it is just soo strange...the vascular guy was so into it...then he talks to dr.dake and then my infuriated neurologist and then he finds NOTHING/// even more odd is that he takes blood from jugular vein and azygo vein to check for iron depoist(s)...but my veins looked fine on venogram..sorry i am NOT going for it....conspiracy theory>>>>who knows...but i doubt highly that i am the only chick with ms (proven through spinal lumbar puncture) that does not have this CCSVI...personally my neuro did not want anything to do with it and even made threats about reporting the vascular guy to the meDICAL board for"experimental" surgery...just find it odd that neuro-guy spoke to vasc. guy who did veno gram and found nothing!!! Not to mention when vasc. guy looked at MRV he saw narrowing...it just blows my MIND!!!!PERIOD.......

LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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