Appointment dates for Albany Community Care

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

Appointment dates for Albany Community Care

Postby bruce123 » Sat Sep 18, 2010 11:13 am

This thread is to keep track of appointment times for the Albany Community Care Clinic with Dr. Siskin and his team. There is a thread titled "CCSVI treatment available in the US" Many people were posting their call dates and appointment dates there. Now that there are a number of treatment locations in the US the posts in that thread are getting quite varied.

This thread is where people can post when they get their call to schedule the actual appointment. This will help those who are waiting and wondering when they may get their call.

The situation at this time seems to be that if you called in late May then you should be treated before the end of this year. If you called in early June you should be treated in early 2011. If you called in mid June then it should be mid 2011.

This can change as people leave the list to go elsewhere. Also, the doctors may change how they are doing things, possibly speeding things up or maybe slowing things down. That's why it's good to have a thread that keeps track of what we know.

Canadian and other foreign patents seem to be a bit slower since they are treated in the clinic so that costs can be kept down. American patients who are covered by insurance are treated in the hospital as well but this is much more expensive.

My situation is that I called on May 26 and got my call back on June 3. I have not been scheduled for an appointment yet but I expect a call very soon.

Here are a few posts from the other thread just to give people some background. They start back about a month ago.


Siduri
I was rather disappointed to hear how slowly the list for Dr. S in Albany seems to be moving. They have me down for having called on June 15 and was told this morning that I'd probably get a call around the first of the year to schedule an appointment!


Millertime
I finally broke down and emailed Albany on the general timeframe I could expect an appointment. I did this as I can get into 2 facilities in Europe one the first week in Dec and the other probably sooner. I was wanting to go to Albany but not if it is a couple of months longer to wait.
I initially called the end of June (forget exact date but within last 2 daysof June) and was told during the followup return phone call that it would be late fall before I could have the procedure.
In the email just recieved I was told:
At this point, all we are telling people who called us at that time is that we will have an appointment for them well into 2011. Every month, we are revising our estimates and expect to do so again in a week or so.
Not what I was really expecting.
Figured I better report this as many others are probably wondering who called during this timeframe too.
Note : this was for procedure in clinic without insurance.


Tfau
Just wanted to share a little information, although I don't think it adds to what we already know from this thread.
I finally broke down and emailed Dr. S's office in Albany to ask where we were on the list (I didn't record the date of our initial call). I put in the Re line "please answer only if you have a spare minute".
Dr. S wrote back today (Sunday) and let me know that our call was May 28th and said that they are just finishing up the Oct appts and we should expect to get a date in Nov or Dec at the latest.
We're in Canada so would be going to the clinic, but Dr. S didn't make a distinction between hospital and clinic treatment in his email. However, in my email to him, I mentioned that we are Canadian and do not have insurance for the procedure in the States, so he must have been talking about scheduling for the clinic.


Brave
I called Alany June28 and last week e-mailed Dr S to ask if they can tell me any tentative date.
He replied today saying that my turn will be around mid 2011


Nellie
Just a little info! I emailed Dr. Siskin yesterday as I was wondering where I was on the list. I rcvd. my initial call in July saying they would call when they had an appt. I was told the appt. would most likely be Dec. Yesterday Dr. Siskin replied it would be mid 2011. I was so disappointed & am having trouble understanding how there could be a 6 mos. difference. Not sure what is going on there with the scheduling.


Kimful
Call in July said I would likely have an appointment in Dec/Jan. I emailed Dr. Siskin August 29 and he said I wouldn't have an appointment now until well into 2011. I'm disappointed too.


Bruce
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Timeline for procedure

Postby NormB » Sat Sep 18, 2010 1:00 pm

Thanks Bruce for this thread although it seems not too indicative for a timeline as people with different call dates seems to receive well into 2011 as I when my call date was July 09.
Just keeping hopes up is as much one can do.
Good Luck
Take Care All

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby Bobbi » Sat Sep 18, 2010 1:14 pm

NEW: 2nd Clinical Trial for angioplasty treatment of CCSVI announced. Dr. Gary Siskin in Albany, NY, is recruiting Evaluation of Angioplasty in the Treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) ...
http://clinicaltrials.gov/ct2/show?term=ccsvi&rank=1

Maybe this is why they are moving slowly.
I called July 19th ... no appointment yet.
This thread is a good idea.
Bobbi
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Postby KikiT » Sun Sep 19, 2010 8:58 am

I have an appt. for testing and consult Nov 9...I was to be treated by Dr. Sclafani the Tues after he was shut down. I must have called Albany in May...not sure. Could have had appt, in Sept, but not with Siskin, with associate. No date for procedure yet. Maybe it will be my Christmas present!
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Postby bruce123 » Tue Sep 21, 2010 4:56 am

Hey KikiT,

Do I understand correctly that you were offered an appointment in September but turned it down because it was not with Dr. Siskin?

I too hope that my wife will be treated by Dr. Siskin himself but now that it has been announced that he will be conducting a double blinded study of CCSVI I have a feeling that he will not be doing too many procedures outside the study. Actually, I'm concerned that the Community Care Clinic may slow down significantly due to this study. I noticed that nobody seems to be getting phone calls lately, at least they aren't posting.

This CCSVI study is fantastic and it will go a long way in advancing CCSVI treatment, but for those waiting for the Community Care Clinic to call it is a two edged sword.

Does anyone have any information on how this study will affect the rate at which patients are treated ?

Bruce
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Postby Bobbi » Tue Sep 21, 2010 7:20 am

I'm hoping that this does not effect the schedule of the procedures.
They have been training new doctors at Community Care to meet the need. Last week (on FB) there were many (3 or 4) who were getting appointments in November due to cancelations. Seems that people book in at 3 or 4 appointments (at various clinics) and take the one that comes up first, and then cancel only once they have the procedure. Can't really blame them.
My friend TD got back from Albany three weeks ago and said to be patient and that they are very busy.
Try to get your body and mind ready ... It will be here before you know it.
Bobbi
Last edited by Bobbi on Sat Sep 25, 2010 7:10 am, edited 1 time in total.
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treatment in Albany

Postby suebaiden » Tue Sep 21, 2010 7:29 am

thanks this info is reassuring.
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Postby naychergirl » Thu Sep 23, 2010 1:10 pm

I recieved my date of Oct. 8th and myinsurance is covering it! Who would have thought? Maybe the insurance companies are getting hip to the possible benefits!
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Postby Bobbi » Thu Sep 23, 2010 2:31 pm

Hello naychergirl ... Congratulations on getting a date
Could you please let us know when you first contacted Albany (Community Home Care) and were placed on the wait list? We are trying to get a feel for where they may be in regards to scheduling.
I am assuming that you are from the US?
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Postby TFau » Fri Sep 24, 2010 5:13 am

Hi Everyone:

We're still waiting for a call. Our place on the list is from our call on May 28th and we're from Canada. Has anyone who is around the same place on the list been called?

Thanks.
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Postby naychergirl » Fri Sep 24, 2010 7:13 am

Hey Bobbi and Tfal!
I think I contacted them late May early June. I emailed Dr. Siskin a few weeks ago to find out if he could give me a "round about date". He wrote me back saying he was booked until April 2011. But a few days later, I get a call with a date with another doctor in his practice. So, you may want to touch base with them. You just never know!
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Postby Shueywho » Fri Sep 24, 2010 7:50 am

Hi TFAU, we called around May 20th and my partner has an appointment for Oct. 7th. We were only given about 6 weeks notice, so it could happen quick when it does. I don't know if it was a cancellation though.

doesn't hurt to check, you could email them also.
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Postby naychergirl » Sat Sep 25, 2010 6:16 am

Shueywho wrote:Hi TFAU, we called around May 20th and my partner has an appointment for Oct. 7th. We were only given about 6 weeks notice, so it could happen quick when it does. I don't know if it was a cancellation though.
doesn't hurt to check, you could email them also.


Hi Shueywho! I am going to have the proceedure on Oct. 8th. I'll try to look for you, maybe we could hve dinner together.
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Postby 1eye » Sat Sep 25, 2010 10:28 pm

I hope it gives anybody confidence to go ahead with Dr. Siskin's lab to know that I was retested yesterday at Dr. MacDonald's place in Barrie. I passed. They even looked at deep cerebrals. They can't do azygous with Doppler, but I understand the restenosis rate is much higher with them. Dr. Gary did a great job, and he rescans you the next day, but the 1-month retest was a real confidence-builder for me.

Sorry again about the snoring. Just thought you might enjoy a little mood music while you worked...
"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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Postby bruce123 » Sun Sep 26, 2010 10:21 am

Congrats 1eye. It's good to hear that everything is still flowing as it should.

Restenosis is a real concern for us. It seems that it is much more common than we first thought. I'm sure they will have procedures that will minimize this problem within a few years but until then we're the ones providing the data.

I have been wondering about follow-ups. The Albany clinic does a scan the next day but I assume we are left on our own after that. Do they offer followup scans at 6 months? Can you book them in advance so that you are not on a long wait list? Is it difficult getting in for a scan at Dr. McDonald's clinic in Barrie?

I would like some information from fellow Canadians regarding how they plan to have followup scans done.

Bruce.
called Albany May 26. Still waiting for an appointment.
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