Has anyone been treated for CCSVI at Dayton IR?

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

Has anyone been treated for CCSVI at Dayton IR?

Postby David1949 » Tue Mar 13, 2012 3:59 pm

Has anyone been treated for CCSVI at Dayton IR? This one is part of the Hubbard Foundation registry. And it's one of only a very few near Michigan.
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby euphoniaa » Tue Mar 13, 2012 4:47 pm

David1949 wrote:Has anyone been treated for CCSVI at Dayton IR? This one is part of the Hubbard Foundation registry. And it's one of only a very few near Michigan.


In the "List of Doctors" thread, they say they've done only 8-10 procedures so far. You might want to check out that discussion.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic7352.html
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby Cece » Tue Mar 13, 2012 8:23 pm

Keeping Dr. Ferral or Dr. Arslan on your short list too? Arslan is in Chicago now. Ferral uses IVUS and has always been described as conservative.

DIR has a youtube link to a patient testimonial in the other thread. I am not sure what to think about Dr. Syed of DIR. He has a lengthy list of publications in googlescholar. But most of them are on vertebroplasty, which is spinal injections of cement. (Info on vertebroplasty: http://www.painphysicianjournal.com/200 ... 67-380.pdf
and info on blinded sham trials of vertebroplasty that found no difference between vertebroplasty and placebo: http://en.wikipedia.org/wiki/Percutaneo ... ebroplasty )
Vertebroplasty has nothing to do with angioplasty, and is not the ideal background for a CCSVI IR. But then, digging further, here's a paper by Dr. Syed in which he treated nutcracker syndrome: http://pvs.sagepub.com/content/early/20 ... 4.abstract
And here he is doing carotid artery stenting: http://www.jevtonline.org/doi/abs/10.15 ... lCode=enth
And subclavian stenting with a hostile aortic arch: http://www.sciencedirect.com/science/ar ... 8911005008

So, yes, it would be good to hear from any actual patients of Dr. Syed's.
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby David1949 » Wed Mar 14, 2012 6:50 pm

Thanks for reminding me of Dr. Ferral and for the news on Dr. Arslan.
I think it's time for me to go ahead and do it. Waiting for the procedure to become available in Michigan is apparently hopeless.
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby PW5751 » Wed Mar 21, 2012 7:11 am

Yes, my wife had the CCSVI treatment at DIR. My wife has had MS since 1979. The treatment works! I have no economic stake in endorsing this. She had terrible pain in both wrists, both ankles including her achilies tendons, she was dead from her abdomen down (no feeling). She had a almost constant headache that she compared to an "ice cream freeze", blurred vision at times, balance problems, cognition fog, the list goes on. She would lay awake at night crying in pain trying to get to sleep. Very sensitive to heat, cold, and certain types of light.

We did some research and choose Dayton Interventional Radiology. Not knowing anything about the facility except in was in the Hubbard Registry and close to out daughter.
Chuck Haynes was very professional, going out of his way to make sure everything was taken care of by the time we got there. I don't know if I have ever had a medical facility go to that much trouble for a patient.
Dr. Syed had about a hour consultation before the procedure with my wife, and again, I've never seen a doctor show that much care for a patient
I don't think I've ever felt that comfortable talking about and understanding a procedure like the one my wife had at DIR.

I need to say this about the CCSVI treatment, it works!...excuse my expletives, but by God it works! Listen, everyone out there with MS do this procedure!, it works. Believe what they have proven.
Go to Dayton, meet with Dr. Syed, Chuck and the staff. If Dayton isn't close enough (we drove 1160 miles), then go to one of the facilities in the Hubbard Foundation...Don't let your Neuro doctors poor any others tell you it won't work, my wife is living proof it does. She had the procedure done on Mar. 12, and has been virtually symptom free for 9 days. Its just short of a miracle......whew!
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby Diana12 » Thu Mar 29, 2012 10:58 am

http://www.daytonir.com/LiberationTreatmentCCSVI.aspx

My surgeon, Dr Syed's video is at the top of this page, and the video with my opinion is at the lower portion of the page
http://www.daytonir.com/LiberationTreatmentCCSVI.aspx

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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby Cece » Thu Mar 29, 2012 12:02 pm

Thank you both for posting. PW5751, I'm glad to hear of your wife's improvement. Does DIR have a recommendation for follow-up ultrasounds? Some recommend them at 3 months but it may be that a 1 month ultrasound is the safest choice because if a clot happens to have formed, at 1 month there are more options of what to do about it, which might mean medical management with anticoagulants but, for the best treatment, might mean manual removal of the clot. An important thing to think about post-procedure!
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby DIR » Sun Apr 08, 2012 11:28 am

Cece: At this time, a follow-up ultrasound is not a part of the protocol we are following which is through the Hubbard Foundation. If the symptoms worsen or return, then an ultrasound would be recommended.
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Re: Has anyone been treated for CCSVI at Dayton IR?

Postby 1eye » Tue Apr 10, 2012 12:16 pm

IVUS?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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