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Rhode Island or California
Posted: Tue Jun 07, 2011 1:39 pm
by mommyg
My husband was liberated in Bulgaria in September. He has restenosed and we're trying to decide whether to go to Rhode Island or California. Any opinions good or bad would be appreciated.
Halifax Yorkshire England ???
Posted: Wed Jun 08, 2011 7:35 am
by MarkW
Are you in Halifax Yorkshire England ??? Please follow CCSVI Alliance advice about staying local. Also best practice is not to fly immediately (10-20 days) after the procedure.
MarkW
Posted: Wed Jun 08, 2011 7:37 am
by mommyg
We're from Halifax Nova Scotia. This procedure isn't offered in Canada so unfortunately we can't have it done locally. We would also be driving, not flying.
Posted: Wed Jun 08, 2011 7:44 am
by Cece
Dr. Ponec in California or Dr. Arata or ... ?
I forget who the doctor in Rhode Island is.
What a long drive either way! Which is closer? There is also Dr. Cumming in Minneapolis, Dr. Siskin or Dr. Sclafani in NY, Dr. Torrance in Seattle, Dr. McGuckin ...
Did your husband have improvements after the first procedure, that have been lost? Was he on an anticoagulant or do you think there are any complications (thrombosis, excessive regrowth in a stent)?
Wishing you the best with this decision!
Posted: Wed Jun 08, 2011 7:56 am
by WeWillBeatMS
My money is on Dr Sclafani. I'm going to Brooklyn in a few days to be treated by him. He is a tireless advocate for people with CCSVI and even answers questions directly here in TIMS. I'm not sure who the IR is in Rhode Island but I would think it would be worth the extra gas money and time to keep driving and either see Dr Sclafani in Brooklyn or Dr Siskin (who also has a lot of experience treating CCSVI) in Albany.
WeWillBeatMS
Posted: Wed Jun 08, 2011 8:50 am
by mommyg
@cece...Rhode Island just called me back so we'll go there because the wait time is short. Only a month. It's about a 12 hour drive. My husband had great improvements the first time but some of his symptoms have returned. He didn't have stents the first time. Thanks for your responses.
Posted: Wed Jun 15, 2011 5:54 pm
by msgator
I had my procedure done last oct in RI, I believe i was patient number 20 for the practice and have been back for 3 follow up ultra sounds. The staff there is wonderful. I have good flow on both sides still and have seen wonderful improvements.
I did physical therapy after the procedure and went with my neuros blessing. He has been impressed with my improvements. Just two weeks ago he gave me his blessing to go off the disease modifying drugs, provided I don't have any flare ups.
Also had an MRI which showed no active lesions right now and no change since 2009. Good luck. You will be in good hands.
Ann