MediTest
Submitted by alena on Tue, 2012-12-11 23:38

Have ppms for 10 years live inMelbourne.CCSVI MY STORYI discovered CCSVI known as ‘liberation treatment’ last year and I believed it would be my cure to rid MS. I found so many positive stories and couldn’t believe how active they were straight after their procedure.CSVI (Chronic cerebro-spinal venous insufficiency) is a chronic problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis, a narrowing in the veins that drain the spine and brain.First step was to have a Doppler ultrasound of my neck. Usually people don’t want to have negative results but I was hoping to find narrowing of my veins and they did.  Next step was to undergo balloon angioplasty – balloon dilation to widen vessels to     narrowed by stenosis or occlusions as I was told by the interventional radiologist‘I was an ideal candidate for this procedure’. I was so excited, I couldn’t sleep at night. I had to occupy my mind, so I was cleaning. Finally my procedure date was set and I couldn’t wait to be stenosis free. I left the private hospital with aspirin for 21 days and waited for results.I felt completely “normal” within a few hours of the procedure with no immediate changes. I have no improvements still tingling and weakness in my right weak leg, find it difficult to walk comfortably. It’s possible that the balloon angioplasty performed on me was only temporarily effective, and soon after treatment my veins reverted to their previous condition.I don’t believe everything that I read anymore because it doesn’t apply to everyone. This is hard to accept, as we don’t have many choices.  CCSVI is an easy concept to understand but difficult to treat and at least I have a clean house afterall!                  I still keep searching tried Fampyra drug also and didn’t work either.Abx? we will see.

Alena, since you live in Melbourne, I think you need to make an appointment to see Dr Thibault from the television show that I think you have seen.  He tends to think that C pn causes the venous malformations and now treats people with antibiotics as well as organizing venoplasty.......................Sarah

A Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi, just read your post, I had ccsvi procedure 3 times now - seem to have constant re stenosis problem - that led me to starting abx - it has never had any effect on my walking, but did improve quality of life things a lot, as long as the veins stayed open.  It seems that those who had the best ccsvi results were rrms - not heard of any great success stories from progressive patents - seems we both have to live in hope with the abx!  Good luck to you and post how you are doing, love Suzannex


diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2

Hi Suzanex,

thanks for your commnent,

maybe there is a  tendency  to think that C pn causes the venous malformations.I have never heard of anyone having good results with ppms and ccsvi.

Going to start abx (after my holiday in NZ) say mid March.Iam a bit scared never been on any abx in my life.Iam finding it difficult to walk now with severe R leg circumduction.I can't wait have to try something.It is very upseting I used to be very fit.

alena

 

I tried angioplasty twice with no possitive results.  I think my ms has been progressive from the get-go.  Can't wait to hear why some have such great results and others do not, in the mean time, I started the abx 6 weeks ago.  I really do feel this is the answer to my ms.  Best to you! 

Signed,

Impatiently waitingImage removed.