That's it! my CCSVI journey is over.

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

Postby htribe74 » Fri Jan 14, 2011 11:47 am

Thank you so much for putting your frustration out there. Bottom line is that all patients respond so differently to treatment. One thing that struck me as I was reading vivavie-- just as each patient is different, such is each doctor. The fact that you were seen by the same doctor 4 times with declining results, or rather lack of "results", but, you experienced a somewhat positive outcome when treated by the first, would lead me to question, as I'm sure you have, WHY?
If the relief was there in Poland, then obviously your body has the capacity to respond positively to the increased blood flow. I would just be curious to wonder results if treated by another Dr.? Disclaimer: I know nothing of your provider and in no way am knocking his ability....Just thinking aloud....
Wish you all the best!!!
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Postby LR1234 » Fri Jan 14, 2011 11:59 am

Viv: What blood thinners were you on for the first procedure? Were you on the same for all the others? and for how long?

Sorry to hear of your journey and that it has not ended with a good result.
I would stop as well if I were you. I have decided to stop after 2 treatments although I feel better than I have in years (but I think it might be cause of the blood thinners which is why I am interested to see what you were prescribed)
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Postby vivavie » Fri Jan 14, 2011 12:25 pm

htrib,
Not getting back the improvements from Poland IS one of my big question?!!?
I had 4 venos from the same IR but 2 of those were to correct complications; 1st one was to open up the stent this led to my jug collapsing, 2nd stented to keep jug open, day after thrombosis hence another veno. They were not all CCSVI treatment per say.

LR, starting Monday it is the 1st time since April that I am not on any blood thinners, I was hoping for a relief but no change yet.
Poland (stent): clexane + Plavix + aspirin
2nd: continue Plavix + aspirin
3th (+3 stents): Lovenox + Coumadin
4th (angio only): Lovenox + Plavix
Since Monday: aspirin only
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Postby LR1234 » Fri Jan 14, 2011 12:40 pm

mmmm so maybe its not the blood thinners then.
Do you know what doses you were on for the clexane and lovenox?
Are they the same? (just different names?)
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Postby vivavie » Fri Jan 14, 2011 3:21 pm

LR, I bought the Clexane in Poland, I have no idea if it is the same as Lovenox.

Lovenox dosage 60mg.

Personnally blood thinners and anti-coagulants did not improve the way i feel, quite the contrary. When I stop the Clexane in the spring I felt much better. I had a Jello brain while on it. I am still hoping to feel a bit better when my blood returns to normal, Dr S mentionned 7 days to get ride of it all.

Dania, when my jug collapse I felt Horrible, I got the veno to correct it 3 weeks after. It help, I don't ever want to return to that place so I can imagine how you are feeling... and it's been a long time for you. I often think about you and will be sending positive energy your way on the 19! I know if you get just that relief from the procedure it will be great but I do wish you more! Just the trip will be a lot, good luck. Courage, you are so brave. Sylvie
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