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Posted: Fri Feb 11, 2011 10:23 am
by vivavie
Thank you Cece, I thought here we go again and I did not have it in me to explain... you did it perfectly! I had 5 catheter venograms but I did not have ALL my veins angio (ballooned) every time!!!

Are you planning on typing DURING your procedure!?!!
Sending positive energy your way

Posted: Fri Feb 11, 2011 11:35 am
by Cece
maybe vivavie :D

Posted: Fri Feb 11, 2011 1:23 pm
by jacksonsmommy
Hi Java,

Just my $0.02 here.....

If I were you, for now I'd stop at the two procedures. Give the science a year (or three) to develop and then re-evaluate.

My advice would be different if you were MUCH older or much more progressive. But for now, I'd concentrate on trying to manage the symptoms and enjoy your infant.

Posted: Sat Feb 12, 2011 2:44 am
by CindyCB
I would be interested to know how many MSers/CCSVI sufferers have thyroid problems too?

I had a vein collapse in my hand after a cannula at the age of 28 (quite unusual) and had a really hard time getting blood drawn until I started on thyroid meds.

Also the internal jugulars drain the thyroid veins... just a thought.

Posted: Sat Feb 12, 2011 5:16 am
by bigfoot14
Cindy

There's a thread on that somewhere....use the search feature

Posted: Sat Feb 12, 2011 6:23 am
by Cece
cindy, there has to be a connection, the thyroid is right there in the neck in the danger zone, it's very vascular rich, when the jugulars are blocked, the collateral flow goes right through the thyroid, we can talk more about this another day as I find it very interesting but I have a big day today (in two hours...for anyone counting with me!)

Posted: Sat Feb 12, 2011 11:35 am
by NZer1
I was looking at this link to thyroid yesterday.
http://www.facebook.com/note.php?note_i ... 2832983940

Posted: Sat Feb 12, 2011 1:11 pm
by CindyCB
Really interesting piece.

I have autoimmune thyroid disease so have fairly high antithyroid antibodies (and it runs in my family) but I am sure CCSVI hasn't helped things.

I know that having low thyroid function can make it harder to draw blood - a lot of the people I talk to on a thyroid forum have had problems with finding the veins before medication.

I wonder if this in turn effects the jugular veins too? Perhaps compounds a pre-existing condition.

Posted: Mon Feb 21, 2011 5:46 pm
by javabean
Just wanted to say thanks for the responses and to also that I went for the ultrasound today and Dr. Makris found a blockage on the right side. I plan to go for the procedure this Friday. Once again I'm faced with the unertainty of this but also feel like what the hell. I have nothing more to lose...

Posted: Mon Feb 21, 2011 6:11 pm
by Donnchadh
javabean wrote:Just wanted to say thanks for the responses and to also that I went for the ultrasound today and Dr. Makris found a blockage on the right side. I plan to go for the procedure this Friday. Once again I'm faced with the unertainty of this but also feel like what the hell. I have nothing more to lose...
Please let us know how it goes for you....wishing you the best of luck!
ETA: did you have stents implanted in the two previous procedures?

Donnchadh

Posted: Mon Feb 21, 2011 6:44 pm
by Vivianne766
javabean wrote:Just wanted to say thanks for the responses and to also that I went for the ultrasound today and Dr. Makris found a blockage on the right side. I plan to go for the procedure this Friday. Once again I'm faced with the unertainty of this but also feel like what the hell. I have nothing more to lose...
wishing u best results my friend.
:)

Posted: Mon Feb 21, 2011 6:44 pm
by javabean
No stents in either of the previous two procedures.

Posted: Thu Feb 24, 2011 4:48 pm
by javabean
So, I go for my third and hopefully last procedure tomorrow. What is the difference between this and the previous two? Well, the doctorsaid he will use a stent but he cautioned that don't alwayd hold the veins open. He seems to think he can keep the veins open by holding them open longer. I guess we'll see. Here's to hoping three time's a charm

ccsvi

Posted: Thu Feb 24, 2011 8:05 pm
by blossom
wishing you well and much success.

Posted: Thu Feb 24, 2011 8:16 pm
by CD
javabean wrote:So, I go for my third and hopefully last procedure tomorrow. What is the difference between this and the previous two? Well, the doctorsaid he will use a stent but he cautioned that don't alwayd hold the veins open. He seems to think he can keep the veins open by holding them open longer. I guess we'll see. Here's to hoping three time's a charm
Good luck to you. I hope you don't have to go back for anymore maintenance. :)