Dr. Siskin - patient information

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Sharon
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Dr. Siskin - patient information

Post by Sharon »

All -
To all patients who have contacted Dr. Siskin in the past - this is important information:
IMPORTANT MESSAGE FROM DR. GARY SISKIN, DR. KEN MANDATO, AND DR. MERIDITH ENGLANDER FROM COMMUNITY CARE PHYSICIANS IN ALBANY, NEW YORK

I would like to take this opportunity to thank everyone who has come to Albany to undergo their venogram and angioplasty procedure with our practice. It has truly been a privilege to have played a role in the care that many of you have received. During this past year, we have learned a lot about CCSVI. As many of you know, treatment of CCSVI can potentially lead to significant symptomatic improvement and we know that we have positively impacted the lives of many people who have been treated with angioplasty and stent placement. Others of you know that symptoms do not improve in everyone. The role that treatment plays in altering disease progression remains uncertain. However, we are committed to moving forward with both research and treatment, and look forward to continue sharing information about this exciting advance with you in the future.
I would also like to thank the patients who have been waiting for an appointment with our practice. Your exceptional patience is recognized and appreciated. As I have said to many of you on the phone and through e-mail, we have been putting many things into place in order to increase the number of people that we are able to treat and that is exactly what we have done. We have been revising our estimates and are actually months ahead of where we thought we would be just a few months ago. To date, we have treated more than 530 patients, and we expect that number to grow as we continue to offer our procedural expertise, our familiarity with ongoing research through our own active participation, and our enthusiasm and commitment to treating patients with CCSVI.
I have prepared this post today to announce a change in the way our CCSVI practice is going to be working. Next week, we will be unveiling a new web-based portal for patients wishing to register for this procedure. Links from our website will be set up to this new portal, which can be found at www.ccsvialbany.com. New patients will be able to register and place their name on our waiting list through this system. Importantly, all patients who have registered through this system will be able to check in regularly to monitor waiting times, to read patient testimonials, and to communicate with our providers. In addition, we will be posting information about our CCSVI practice on a blog that will be an important part of this password-protected portal.
Here is the important part. All patients who have registered with us in the past will need to register with us again through this portal. We will be sending e-mails over the course of the next week to everyone on our list with the information they will need to access the portal. After a certain amount of time has passed, we will assume that those of you who do not register through the portal are no longer interested in undergoing this procedure with our practice. We will try multiple times to contact people who do not respond to this request by e-mail. I give you my word that we will not be disregarding the list we have right now. As patients register through the portal, they will be placed on our waiting list based on when they originally contacted our office…not when they re-register with us through the portal. If you do not wish to remain on our waiting list, please do not create an account. We wish that we could take care of this for you, but we cannot due to patient-privacy issues. It is not our intention to inconvenience anyone. We have given a great deal of thought to this and believe that this change is one that will ultimately make it easier for anyone who registers with our practice in the future. Since it will be impossible to work under two separate systems, we have decided to consolidate our “past” system into our “future” system. Therefore, I would like every patient who has registered with our practice and is now waiting for an appointment to be on the lookout for e-mails from us regarding this new system. Once you receive that e-mail, please take a few minutes to register with us again if you are still interested in being on our list. There will be a direct link from the e-mail to the registration page. We will be continuously monitoring our progress with this and will make phone calls to patients who do not register on the portal to make sure that the e-mails were received and to find out if there is still a desire to remain on our list. Therefore, if your contact information has changed since you registered with us or if you just want to make sure we have it right, please send us an e-mail to ccsvi@communitycare.com.
Patients who have been treated by us already do not need to register with this system. All of you know how to contact us if you have questions or concerns. For those of you have been treated elsewhere and are looking to be treated for possible restenosis, we ask that you register on this site as well. Your cases will be reviewed on an individual basis by one of our physicians to determine the appropriateness of repeat treatment. Therefore, please include as much information about your previous treatment as possible when you register.
Once again, thank you very much for entrusting your care with our practice. Our entire practice is looking forward to meeting many of you in the future.
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Doodles
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Post by Doodles »

Sharon, thank you so much for posting this information.
Cece
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Post by Cece »

I hope they're able to keep people from getting lost in the transition. There are people who have been waiting on Siskin's group since summer.

If you are on Siskin's list, you'll lose your place if you do not register fresh in the online system!!!
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gsiskin
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Post by gsiskin »

True, but not for a long time. We will not take anyone off of our list and will keep them right where they are now until we get in touch with them and hear ourselves that they are no longer interested in being on our list. Yes, it's a big endeavor but we think it will ultimately be better for everyone this way.

Gary
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Post by Cece »

That is good to know. I can be an alarmist at times..... :oops:

Welcome to the site!
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Quest56
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Post by Quest56 »

Cece wrote:Welcome to the site!
Cece, Sharon is one of the original Stanford CCSVI pioneers, has been an inspiration to many of us here at TIMS, myself included, and is current president of CCSVI Alliance.


edit: Oops, sorry, you were no doubt responding to gsiskin.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
Cece
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Post by Cece »

questor, yes, the welcome was to Dr. Siskin, and I agree that Sharon is an inspiration and a valued member of the community!
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Sharon
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Post by Sharon »

Questor and Cece,

Thank you for the kind words.

It has been an amazing journey since we first started researching Dr. Zamboni's theory in December 2008 on TIMS. The friendships that I made on the forum are special and I remain in contact with so many.

CCSVI Alliance is where I spend my time now - 2011 is going to be great -in January we hosted our first free patient educational symposium in Boston; March 5th is the first participant fundraiser in Tampa; we represented the patients at the Town Hall Meeting at ISET in January....more to come in the next few months!

Sharon
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