Appointment dates for Albany Community Care

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

Postby TFau » Tue Oct 19, 2010 7:36 am

OMG - this is really happening! I'm so happy for you and your wife Bruce!

We're also wondering what to do about stents. My husband (who is the one being treated) hasn't been following this very closely, so I think that he will decide once Dr. Siskin or whomever describes the risks, and I'll chime in with questions about the bits I know anecdotally.

We don't have a call yet, but we were on the list as of May 28th. I had sort of given up the hope of going before Christmas but now, maybe, we'll receive a call soon. I have law school exams on Dec 7th and 8th - I wonder if we'll get a date around then.

I'll update if and when we hear!

Theresa
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Postby bruce123 » Tue Oct 19, 2010 1:00 pm

Thersa,
If the only days you can't go to Albany are Dec. 7-8, then you can be pretty that's when your appointment will be. That's the way these things go.

I'm just kidding. If that does happen I'm sure you can move the appointment back a day or two since they seem to make appointments in order.

We will be seeing Dr. Meridith Englander. We were told that Dr. Siskin doesn't do may procedures at this time since he is traveling to conferances and speaking about CCSVI most of the time. I am comfortable with Dr. Englander as I have read many posts about her and everyone seems happy. The person who called said that this clinic has done this procedure more than any other place in North America, which is true. We were on other waiting lists but Albany is where we really wanted to go.

We are expecting a call from Dr. Englander within the next two weeks to asnwer any questions. They will also be emailing us an information package.

Good luck on your law school exams and I hope you get your appointment call soon. It can't be too far away.

Bruce.
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Postby TFau » Thu Oct 21, 2010 7:52 am

Thanks for the reply Bruce!

We just got the call! My husband's appt is Dec. 14th at 8 am. We were on the waiting list as of May 28th. We are seeing Dr. Mandato.

After over a year of trying to find a place to go, and being so disappointed with Canada's approach to this, I can't believe that we have an appt!

I just don't know what else to say at the moment. I feel a little stunned, in an excited sort of way. We are not counting on any improvements, but just to have the chance to possibly improve something, or even to slow progression, warrants this level excitement, I think.
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Postby Bobbi » Thu Oct 21, 2010 8:58 am

This is great news TFau. An early Christmas present. Good luck and let us know how you made out.
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Postby bruce123 » Thu Oct 21, 2010 10:10 am

Great news TFau !

I know what you mean about feeling stunned. I feel like I should be doing something to prepare but there's really nothing to do. Just make sure our passports are in order.

Here's a summary of the latest appointments that I know about.

Americans:
rssugg called early June. Call back was Oct. 16. Appointment is Nov. 8.
Brave called June 28 and has an appointment for Nov. 24.

Canadians:
Trish317 called May 18. Had treatment Sept 14
Bruce123 called May 26. Call back was Oct. 18. Appointment is Dec. 1
TFau called May 28. Call back was Oct. 20. Appointment is Dec. 14

Hang in there everybody. A few months of waiting will get you treatment by doctors who can draw on the knowlege and experiance of a few hundred more procedures.

Bruce.
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Postby Bobbi » Thu Oct 21, 2010 11:33 am

I have placed this message on facebook ...
"If you are booked for the procedure in Albany, please have a look at www.thisisms.com under the thread "Appointment dates for Albany Community Care". We are trying to track appointments so we can give those who are on the wait list encouragement."
Hope this will help.
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Postby Athena » Thu Oct 21, 2010 12:23 pm

bruce123 wrote:Thersa,
If the only days you can't go to Albany are Dec. 7-8, then you can be pretty that's when your appointment will be. That's the way these things go.

I'm just kidding. If that does happen I'm sure you can move the appointment back a day or two since they seem to make appointments in order.

We will be seeing Dr. Meridith Englander. We were told that Dr. Siskin doesn't do may procedures at this time since he is traveling to conferances and speaking about CCSVI most of the time. I am comfortable with Dr. Englander as I have read many posts about her and everyone seems happy. The person who called said that this clinic has done this procedure more than any other place in North America, which is true. We were on other waiting lists but Albany is where we really wanted to go.

We are expecting a call from Dr. Englander within the next two weeks to asnwer any questions. They will also be emailing us an information package.

Good luck on your law school exams and I hope you get your appointment call soon. It can't be too far away.

Bruce.




Hi Bruce,
Thanks for all the work you are doing on this page to help us. Can you give us info. as to where you read info on people's impressions of Dr. Meredith Englander. I would like to read these. Thank you.
Regards, Athena
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Postby siduri » Thu Oct 21, 2010 6:21 pm

I really don't think it's Americans vs Canadians, but rather insured vs uninsured. Those with insurance are treated at Albany Medical Center hospital, and those without (including and maybe mostly - Canadians) are treated at the clinic to keep their out of pocket expenses lower.

My procedure was done yesterday at the hospital by Dr. Siskin. I found him to be very competent, informative, and likeable, and the two nurses who hung out with me while I fought myself out of sedation were just amazing with their kindness & care. They gave me way more sedation than I was expecting (possibly because my leg started jerking on the table before the sedation hit) and in the end I was left to the cleaning crew. Most procedures take about 4 hours but I was in the hospital for 10 ½!

The procedure caused no pain and I feel no soreness now. They ballooned both my internal jugular veins and my azygos vein in three places. I haven't noticed any dramatic changes but I'll be home by tomorrow night and then can start accessing whether this procedure has done me some good. I know better than to start putting stock in little, perceived changes that might be part of the usual roll or might be the beginnings of a more steady improvement. Many thanks to all who have wished me well and for those still in line, this group has performed around 300 of these now and that experience will be worth the wait, I think.
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Postby vivavie » Fri Oct 22, 2010 8:54 am

Now that Albany is doing the procedure for a while it would be interesting to know what is the re-stenosis rate. They must have a lot of follow up appointments done for the people treated in May/June/July. Dr Siskin talked about is 1/3, 1/3, 1/3 results at procedure, I wonder what are his finding after 3 to 6 months POST-procedure.

Can the next one treated there asked? Or was it posted and I missed it?
Thank you
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Postby rssugg » Fri Oct 22, 2010 11:51 am

here is the deal in Albany - Mehta and Siskin are working off the same wait list.

The good news - they are whittling it down (and i got called from both offices in about a 10 day span!!)
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Postby bruce123 » Fri Oct 22, 2010 12:50 pm

here is the deal in Albany - Mehta and Siskin are working off the same wait list.


Could you explain this further? Are they sharing their waiting lists for the people waiting for the procedure or are they sharing the list for their CCSVI studies? If someone is on the list at Commuity Care Clinic (Siskin) could they end up being treated at The Vascular Group Clinic (Metha)?

This seems a bit odd to me since these are private clinics. I would also think that there would be privacy issues with sharing patient's names. But I'm not complaining. I think that if these two clinincs are somehow working together it says a lot about how these doctors are putting the needs of their parients first.

Bruce.
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Postby rssugg » Fri Oct 22, 2010 1:20 pm

dont know about the studies. from my assessment - If someone is on the list at Commuity Care Clinic (Siskin) could they end up being treated at The Vascular Group Clinic (Metha).

what privacy? a name and a phone number? shouldnt be an issue - especially after you called an answering machine and left your name/number at a place you didnt know. - just saying :)
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Postby Cece » Fri Oct 22, 2010 1:25 pm

Could this be a confusion of Dr. Mehta with Dr. Mandato, who does work with Dr. Siskin?
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Postby rssugg » Sat Oct 23, 2010 1:58 pm

^nope
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Postby javabean » Tue Oct 26, 2010 9:57 am

I got my appointment for December 13th with Dr. Siskin. I also am due to deliver my baby November 16. Just asking for opinions...does anyone think this is too soon or will in any way endanger the procedure?
Last edited by javabean on Tue Oct 26, 2010 12:01 pm, edited 1 time in total.
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