kimful,
We can always hope they'll be cancellations as more come onboard or better yet we get lucky & find one close to home. I think once the trial results come in & hopefully are positive we will see more Drs. willing to perform the procedure. Keep our fingers crossed.
CCSVI treatment available in the U.S.!
-
Vivianne766
- Family Elder
- Posts: 190
- Joined: Sun Mar 07, 2010 3:00 pm
- Location: WNY
- Contact:
Re: Off to Albany
[quote=" I don't always remember what I saw where. Maybe someone can confirm or tell me I need new glasses. 
[/quote]
Hey Trish,
I'm confirming that Dr. Siskins office has IRB approval. I was told by Beth yesterday when she called with a date for me. I'm not going to have Dr. Siskin. He told me he was booked until about April 2011. I am going to have Dr. Englander instead.[/quote]
Me too. I'll have my procedure w/ Dr. E. She seems great. They all work
together as a team I think.
Does their approval for IRB makes any changes to the payment.
My insurance is not covering it cz it's done by a doc. out side their network and it's not an ER thing.
[/quote]Hey Trish,
I'm confirming that Dr. Siskins office has IRB approval. I was told by Beth yesterday when she called with a date for me. I'm not going to have Dr. Siskin. He told me he was booked until about April 2011. I am going to have Dr. Englander instead.[/quote]
Me too. I'll have my procedure w/ Dr. E.
She seems great. They all work together as a team I think.
Does their approval for IRB makes any changes to the payment.
My insurance is not covering it cz it's done by a doc. out side their network and it's not an ER thing.
nellie,nellie wrote:kimful,
We can always hope they'll be cancellations as more come onboard or better yet we get lucky & find one close to home. I think once the trial results come in & hopefully are positive we will see more Drs. willing to perform the procedure. Keep our fingers crossed.
I'm in Ontario, Canada so Albany is actually the closest treatment option for me right now. Based on our federal government's announcement this week that they wouldn't be funding trials in Canada I can't hope for treatment here. I'm on the waiting list for Sofia, Bulgaria but would much rather go to Albany. So yes let's keep our fingers crossed that we get in much sooner than mid 2011!!
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Vivianne766
- Family Elder
- Posts: 190
- Joined: Sun Mar 07, 2010 3:00 pm
- Location: WNY
- Contact:
I think things are moving faster now. Look at all the dates that are offered. I hope everyone on the list will get a date soon.kimful wrote:nellie,nellie wrote:kimful,
We can always hope they'll be cancellations as more come onboard or better yet we get lucky & find one close to home. I think once the trial results come in & hopefully are positive we will see more Drs. willing to perform the procedure. Keep our fingers crossed.
I'm in Ontario, Canada so Albany is actually the closest treatment option for me right now. Based on our federal government's announcement this week that they wouldn't be funding trials in Canada I can't hope for treatment here. I'm on the waiting list for Sofia, Bulgaria but would much rather go to Albany. So yes let's keep our fingers crossed that we get in much sooner than mid 2011!!
Kimful,
I feel so badly for the Canadians as they have the highest count with the ms diagnois & yet have had to fight the hardiest for treatment. Seems noone should have to leave the country or state for treatment. I did find a vascular surgeon in my town to see me but after arriving for the appt. and getting my hopes up he declined. His respose was I'd go home & get my name on a list elsewhere. He, also, said someday after we get to heaven we will know the real answer. What a strange comment! I told him I would proceed elsewhere with hopes of finding an answer before I am gone.
I feel so badly for the Canadians as they have the highest count with the ms diagnois & yet have had to fight the hardiest for treatment. Seems noone should have to leave the country or state for treatment. I did find a vascular surgeon in my town to see me but after arriving for the appt. and getting my hopes up he declined. His respose was I'd go home & get my name on a list elsewhere. He, also, said someday after we get to heaven we will know the real answer. What a strange comment! I told him I would proceed elsewhere with hopes of finding an answer before I am gone.
You're right it is hard navigating through all of this without the support of our government, MS Societies and our neurologists. But wow, to have a vascular surgeon go all freaky super religious on you, that' gotta be tough too!nellie wrote:Kimful,
I feel so badly for the Canadians as they have the highest count with the ms diagnois & yet have had to fight the hardiest for treatment. Seems noone should have to leave the country or state for treatment. I did find a vascular surgeon in my town to see me but after arriving for the appt. and getting my hopes up he declined. His respose was I'd go home & get my name on a list elsewhere. He, also, said someday after we get to heaven we will know the real answer. What a strange comment! I told him I would proceed elsewhere with hopes of finding an answer before I am gone.
ONE MORE!!!
This is a quote from an email of my "new local" IR when I asked permission to share with others looking to be treated:
"I have now publicly updated my profile on SIR site indicating interest in CCSVI-no need to feel like you can't tell others! We plan to emulate Albany model-IRB for those eligible (hopefully in Oct)-these folks will need to be very local for FU. Those ineligible (including for geographic reasons) we will diagnose and treat at RIVI. I have started contacting those on list to begin moving forward with CCSVI evaluations at RIVI! "
Gregory M Soares, MD
Director Vascular & Interventional Radiology, RIH
Medical Director RIVI
Providence, RI
401 421 1924
rivascularinstitute.com
I had my stent "unblock" and thorough venoplasty there 2 weeks ago.
He is a nice, competent and enthusiaste IR.
Everybody from reception to discharge were all nice and caring people.
Like Albany they have the possibility to treat at the hospital and at the clinic.
I have only good things to say about my experience at the clinic!
For me it is a 7hrs drive including customs and pit stops (ms obliges...) much less than the 2 days trip to Poland during the volcano irruption in April.
Albany may be an hour less but the wait list is monstruously loooong and the beaches are better in RI (lol)
My follow up is already schedule.
Cece once posted:"These docs are all heroes. We are fortunate that they've taken CCSVI on. They could be on the sidelines waiting for someone else to prove or disprove it."
This is a quote from an email of my "new local" IR when I asked permission to share with others looking to be treated:
"I have now publicly updated my profile on SIR site indicating interest in CCSVI-no need to feel like you can't tell others! We plan to emulate Albany model-IRB for those eligible (hopefully in Oct)-these folks will need to be very local for FU. Those ineligible (including for geographic reasons) we will diagnose and treat at RIVI. I have started contacting those on list to begin moving forward with CCSVI evaluations at RIVI! "
Gregory M Soares, MD
Director Vascular & Interventional Radiology, RIH
Medical Director RIVI
Providence, RI
401 421 1924
rivascularinstitute.com
I had my stent "unblock" and thorough venoplasty there 2 weeks ago.
He is a nice, competent and enthusiaste IR.
Everybody from reception to discharge were all nice and caring people.
Like Albany they have the possibility to treat at the hospital and at the clinic.
I have only good things to say about my experience at the clinic!
For me it is a 7hrs drive including customs and pit stops (ms obliges...) much less than the 2 days trip to Poland during the volcano irruption in April.
Albany may be an hour less but the wait list is monstruously loooong and the beaches are better in RI (lol)
My follow up is already schedule.
Cece once posted:"These docs are all heroes. We are fortunate that they've taken CCSVI on. They could be on the sidelines waiting for someone else to prove or disprove it."
This is wonderful news!!!! I live in Rhode Island, about 45 minutes from Providence. I contacted a doctor here back in April or May when I was searching for someone to treat my darling man. The doctor was willing to see him but did not guarantee that he would treat him. Since he'd be traveling all the way from Iowa just for a consultation, it seemed pointless. So, we went with the guarantee in Albany. His appointment for the procedure is Sept. 14.vivavie wrote:ONE MORE!!!
This is a quote from an email of my "new local" IR when I asked permission to share with others looking to be treated:
"I have now publicly updated my profile on SIR site indicating interest in CCSVI-no need to feel like you can't tell others! We plan to emulate Albany model-IRB for those eligible (hopefully in Oct)-these folks will need to be very local for FU. Those ineligible (including for geographic reasons) we will diagnose and treat at RIVI. I have started contacting those on list to begin moving forward with CCSVI evaluations at RIVI! "
Gregory M Soares, MD
Director Vascular & Interventional Radiology, RIH
Medical Director RIVI
Providence, RI
401 421 1924
rivascularinstitute.com
I had my stent "unblock" and thorough venoplasty there 2 weeks ago.
He is a nice, competent and enthusiaste IR.
Everybody from reception to discharge were all nice and caring people.
Like Albany they have the possibility to treat at the hospital and at the clinic.
I have only good things to say about my experience at the clinic!
For me it is a 7hrs drive including customs and pit stops (ms obliges...) much less than the 2 days trip to Poland during the volcano irruption in April.
Albany may be an hour less but the wait list is monstruously loooong and the beaches are better in RI (lol)
My follow up is already schedule.
Cece once posted:"These docs are all heroes. We are fortunate that they've taken CCSVI on. They could be on the sidelines waiting for someone else to prove or disprove it."
But I'm so happy and proud that there's a doctor onboard in my little home state! And you're right, vivavie, the beaches in RI are better than the ones in New York! lol!
Vivavie: Thanks for the info about Dr. Soares in Rhode Island. I phoned this morning and reached a real person on my first try! She took my details and said Dr. Soares would call me probably this week.
I told the receptionist "You're probably going to be pretty busy today." She laughed and replied "Oh,yes."
Thanks again.
I told the receptionist "You're probably going to be pretty busy today." She laughed and replied "Oh,yes."
Thanks again.
Get a requisition from your family doctor.
Guider wrote:As Cheer says ... go local. It IS possible here in the US. Maybe not Canada (yet) but that's coming as well.
In Newfoundland the neurologists won't even sign a requisition for the doppler ultrasound testing. Very frustrating. But I know that as more people leave the country and go elsewhere for treatment the neurologists will have to acknowledge and document the results.
Guider[/i]
Titah: Get a referral from your family physician for a Doppler if your neurologist won't make the referral. Then, your next challenge will be to find someone to do it.
I don't know if anyone is doing Dopplers in Newfoundland. In Ontario, they are being done at Barrie Vascular Imaging (which now has a very long waiting list) and Toronto Centre for Medical Imaging (http://www.tcfmi.com/) TCFMI has one location in downtown Toronto and one in Port Perrry Ontario (which is east of Toronto). Someone posted here last week that TCFMI now has a waiting list of about 100. With a physician referral, they accept health cards from all provinces except Quebec. I think there is now someplace in Montreal also doing Dopplers.
Good Luck.
I don't know if anyone is doing Dopplers in Newfoundland. In Ontario, they are being done at Barrie Vascular Imaging (which now has a very long waiting list) and Toronto Centre for Medical Imaging (http://www.tcfmi.com/) TCFMI has one location in downtown Toronto and one in Port Perrry Ontario (which is east of Toronto). Someone posted here last week that TCFMI now has a waiting list of about 100. With a physician referral, they accept health cards from all provinces except Quebec. I think there is now someplace in Montreal also doing Dopplers.
Good Luck.
Be careful with those Doppler results. Unless the technician is trained with Zamboni protocole I would not trust it. I had a stent installed in April in Poland. 6 weeks after I lost my improvements. I had a Doppler done in Montreal in July. They told me my veins were 100% NORMAL!!! Since then I had a venogram: stent stenosis, right jug 50% and left jug 70%. The tech had done many many Doppler before they were shut down this spring. I was tested only because I have a stent. He was arrogant enough to tell me that his procedure was better than Zamboni!?!?? Those results than fuel the neuros amunitions against CCSVI...
I would have my test done at the same place they do the procedure.
I would have my test done at the same place they do the procedure.
Vivavie: No, they didn't mention a possible date. She said Dr. Soares would discuss that with me, along with several other points. Do you know what the cost is?
What did you think of Dr. Soares and the treatment in Rhode Island? How are you doing post-liberation (the second one?) How did the ublock the stent from Poland? How did the two locations and treatments compare?
Also, in terms of your caution to Titah about Doppler results, the information about testing in Montreal is good for people to know. Staff at Barrie Vascular Imaging were trained in Italy by Dr. Zamboni. I was tested in Barrie two months ago. The staff there are superb. One of Barrie techs (Angie) was the first trained in North America by Dr. Zamboni. Angie is now the only tech in North America considered qualified by Dr.Z to train other techs. Angie trained the techs at Toronto Centre for Vascular Imaging, so I understand both locations are testing according to Zamboni protocol.
Live Life, Vivavie! Merci.
What did you think of Dr. Soares and the treatment in Rhode Island? How are you doing post-liberation (the second one?) How did the ublock the stent from Poland? How did the two locations and treatments compare?
Also, in terms of your caution to Titah about Doppler results, the information about testing in Montreal is good for people to know. Staff at Barrie Vascular Imaging were trained in Italy by Dr. Zamboni. I was tested in Barrie two months ago. The staff there are superb. One of Barrie techs (Angie) was the first trained in North America by Dr. Zamboni. Angie is now the only tech in North America considered qualified by Dr.Z to train other techs. Angie trained the techs at Toronto Centre for Vascular Imaging, so I understand both locations are testing according to Zamboni protocol.
Live Life, Vivavie! Merci.
Blaze:
In Poland I had a stent in my left jug to fix a faulty valve and they could not enter my Azygos. I had mild improvements that disapeared after 6 weeks. I was sure my stent was block. In RI dr Soares did a thorough job (21/2hrs); he checked iliac, lombar and cleared my stent. I had stenosis left (70%) + right (50%), he did angio with different balloon sizes and also angio Azygos for a kink. I was sure that I was totally Liberated this time but NO. I did not regain my improvements (sleep, saliva, speech, bladder, bowel, no more headache) My main symptoms fatigue - pain - brain fog are unchanged.
The stenosis are probably from all the radiation and treatments I received when I had a tongue cancer 5 years before ms/ccsvi. My veins are pretty small now (left 6mm) and probably not very flexible. I have another appointment with Dr Soares for the next step.
CCSVI looks like an easy plumbing problem but it is still in its infancy. everybody are learning at the same time. But just between April and August a lot has changed. Poland, bulgaria, Koweit, etc are gaining experience with all the procedures and Dr Sclafani symposium help a lot to transfert the knowledge between all the IR.
I have not given up yet and I hope your experience in RI is as good as mine was.
S
In Poland I had a stent in my left jug to fix a faulty valve and they could not enter my Azygos. I had mild improvements that disapeared after 6 weeks. I was sure my stent was block. In RI dr Soares did a thorough job (21/2hrs); he checked iliac, lombar and cleared my stent. I had stenosis left (70%) + right (50%), he did angio with different balloon sizes and also angio Azygos for a kink. I was sure that I was totally Liberated this time but NO. I did not regain my improvements (sleep, saliva, speech, bladder, bowel, no more headache) My main symptoms fatigue - pain - brain fog are unchanged.
The stenosis are probably from all the radiation and treatments I received when I had a tongue cancer 5 years before ms/ccsvi. My veins are pretty small now (left 6mm) and probably not very flexible. I have another appointment with Dr Soares for the next step.
CCSVI looks like an easy plumbing problem but it is still in its infancy. everybody are learning at the same time. But just between April and August a lot has changed. Poland, bulgaria, Koweit, etc are gaining experience with all the procedures and Dr Sclafani symposium help a lot to transfert the knowledge between all the IR.
I have not given up yet and I hope your experience in RI is as good as mine was.
S