I am getting anxious, David, to find out how the procedure works for you. From what you said in the other thread, you don't have some of the traditional CCSVI symptoms. (And that's a good thing! Cogfog is awful, fatigue is awful, memory impairment is awful, etc.) I've posted many quotes from people in the improvement reports talking about improvements in walking so that is what I've got my fingers crossed for you. Even staying the same would be an improvement, if getting worse is the trajectory? I was a member here at TiMS for over a year before I ended up getting treated, and that's unusual these days, so we are similar in that. Keep asking the questions, I wish there were more answers coming. Does Dr. Arslan have a facebook page?
There are many Dr. Arslans on facebook but as far as I can tell none of them is this Dr. Arslan. I've seen videos pre and post ccsvi for two of his patients. Both seemed to do well, but the videos are both old. It's hard to find recent videos on CCSVI at all now.
Dr. Arslan has done over 250 CCSVI procedures. He said only two have gotten worse. (that's good news)
He said restenosis rate is about 50% in 18 months.
His estimate of the likelyhood that the procedure would help me was higher than what I had mentioned. ( also good news)
I've decided that it's time to stop fooling around and just do it!
I'm about 1/2 notch from the wheelchair on the EDSS scale so if I want to walk into the clinic now is the time.
Thank you for your kind thoughts.
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You would find them on CCSVI FLORIDA Facebbok. Go to youtube and put in "ccsvi Barbara"
I think he is a very good choice with good experience. I am an RN and the mom of someone with MS (35) who had CCSVI treated. So I think I am a fairly good judge. Dr Arslen seems to be very knowledgable and keeps abreast of the research. He cares about his patients and he keeps in touch with other pioneers of CCSVI and its treatment. I was sad to hear that he left Tampa FL .
My daughter was treated at Shand's in Gainesville. She was newly diagnosed with MS at the time.
That was in Oct 2010 ....she remains virtually MS symptom free with 20/15 vision. And no evidence of MS on physical exam. Her MRIs are the only thing that gives it away.
I hope you have a similar experience!
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
Thank you for the info and the words of encouragement. Yes I'm seeing Dr. Arslan the week of 4/23. I've seen the Barbara video and also Wendy's. I think things turned out very well for both of them.
I hope your daughter remains free from this monster forever.
I'll let everyone know how it turns out.
My prayer is that one day this site will be called "This Was MS."
I've met Dr. Arslan and he's great. He worked under Dake in VA and as been plugged into CCSVI since the beginning. He's warm and friendly and genuine.
I personally know Barbara Garcia, Nicki Beagle Watts and several others treated by him (most more than once), and they've had impovements. None are "cured" but I think they'd all agree they did the right thing. They're all on facebook, and love to share.
i am disapointed with Dr Arslan as there was no support , follow up when my MS did get worse i could live with the negative result, but being afterwards ignored is just unprofessional, as the saying goes 'success has many fathers, failure is an orphan;