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

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Postby atswc » Sun Jan 02, 2011 2:13 pm

Went to Sofia to have treatment all three vains were narrow and after treatment a day or two later I felt Better,
for one whole month. And then it went back to how it was not really worth

£5500 + £600 (meds) for a month of feeling better what to do i really like Sofia and i get it my vain must have closed but if i go back and have it done again thats plus £6000 and what if they close again
i dont print cash!! (though i wish i did)

what do to do anyone

someone?


help please
:)
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Postby Cece » Sun Jan 02, 2011 2:47 pm

I'm sorry to hear this. If you go to the same doctor who uses the same methods, it would seem to me likely that you'd get the same results (i.e. short-lived improvements). At least you know that you are a responder to this and that the CCSVI treatment does "work" for you.

I remember someone else joking about robbing a bank. I think they were joking....
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Postby soapdiva884 » Sun Jan 02, 2011 3:51 pm

Oh what a horrible choice you have, I am so sorry your in this position. Only YOU can make this decision though. I tend to agree with CeCe, if you go to the same Dr. you may get the same results. Who knows for sure though?
My bf went to Dr. Sclafani and so far so good. I hope we dont end up in your position, but if we do it will take alot of soul searching and finagiling of finances to be able to do this again.
I wish you all the luck in the world and like CeCe said at least you know the procedure works for you, however short lived it was. I am sorry, good luck!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby kc » Sun Jan 02, 2011 4:09 pm

Make sure you are still sleeping inclined. kc
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Postby patientx » Sun Jan 02, 2011 5:07 pm

Sorry to hear about your situation atswc. Unfortunately, your case illustrates the fact that there are just too many unknowns about CCSVI and its connection to MS. Of course, in this forum, mostly what you're going to hear are things like "CCSVI treatment worked for you for a month, so you must have re-stenosed."
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Postby Cece » Sun Jan 02, 2011 5:12 pm

No, only that restenosis needs to be ruled in or out, which could easily be done with a doppler ultrasound of the neck.

However, if she cannot afford a retreatment, this would only be needed for peace of mind and to see if it is clotting, which would require some immediate treatment (maybe coumadin,maybe thrombolysis, maybe a repeat procedure?).
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Postby Brainteaser » Sun Jan 02, 2011 5:23 pm

atswc - where do you live? You need someone nearby who is reputable. It is emerging that followup, aftercare and monitoring is critical with this procedure; perhaps even more important than the procedure itself.

We who have had the treatment know it works - the docs just need to do whatever it takes to keep the veins open.
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Postby soapdiva884 » Sun Jan 02, 2011 6:06 pm

patientx wrote:Sorry to hear about your situation atswc. Unfortunately, your case illustrates the fact that there are just too many unknowns about CCSVI and its connection to MS. Of course, in this forum, mostly what you're going to hear are things like "CCSVI treatment worked for you for a month, so you must have re-stenosed."


I don't believe one way or the other that this person re-stenosed. I do believe this person needs to find out via a doppler what exactly is going on. I too am wondering if this person has had any f/u or ongoing exams with an IR who knows what their doing. You should have had f/u dopplers and exams to make sure everything stays the way it should.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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thanks guys

Postby atswc » Thu Jan 27, 2011 4:13 am

im not sure if im gonna do this again though i'd like to. To see the out come
after all, this time it might work but who's knows? i could be rich tomorrow LOL
thanks for all your comments
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