This Is MS Multiple Sclerosis Community: Knowledge & Support

Brave, your post did cause me some concern, but I am very happy for you and wish you all the best.

I will wait patiently for a fellow Canadian to post on this thread to get an idea where they are on the list. Are there any Canadians out there who recently got a call ?

Bruce.

Finally, a date for the procedure and sorry but I've been too busy to watch the forum and give my time log. Mornings here in Alaska have been pretty frosty and I've been trying to finish up a bunch of projects around the house & barn so that my horses and I will be ready for freeze-up. And I don't move very fast anymore!

My first call to Community Care in Albany was June 15. They called back to get sign-up information on June 23 and sent an email confirmation on June 28. I emailed them on August 29 to see if they could give me a ballpark timeframe; then got an email back from Dr. S saying maybe April, 2011.

That about made me give up on them and I began to look into other options. Then in the middle of making other arrangements, my call from Albany came on September 7! They offered me a scheduling date for October 20! I did ask why Dr. S had just (the week before) told me probably April, and the lady said he must have thought I didn't have insurance.

Insurance or self-pay seems to be the big difference. I'll be treated at Albany Medical Center since I have insurance, and my understanding is that the longer list is for those who have no insurance and will be treated at the clinic.

I feel for those who are still waiting, but hopefully this backlog will be processed soon so we will all have our chance to see if this will help us. I'm trying to keep my expectations in check since I have PPMS and have had symptoms for about 30 years, but I'm at the very least excited to see what they will find. And hey, if I can ease the burden of a few vexing symptoms, I'll take that too.

Best of luck to those still on the list and remember - the experience they're gaining will be a bonus to you.

Thanks for sharing Siduri. Good luck.
Bobbi

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"A journey of a thousand miles begins with a single step." Lao-Tzu

Best of luck siduri!

I received an email back from Community Care yesterday that they have just finished scheduling the November appts and will be beginning the Dec appts. I assume this is for the non-US residents (the uninsured). They said that hopefully we'll hear from them shortly.

I get the impression from comments made here that the clinic appts are moving more slowly than originally anticipated.

This CCSVI thread was started by Bruce123 to keep track of appointment times for the Albany Community Care Clinic with Dr. Siskin and his team.
People can post when they make their first contact with Albany, and when they got their call to schedule the actual appointment. This will help those who are waiting and wondering when they may get their call.
Please distinguish whether you are Canadian or American as there seems to be two wait lists with two procedure areas, the clinic and the hospital.
Thank you, Bobbi

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"A journey of a thousand miles begins with a single step." Lao-Tzu

-Waitlist early June
-They called today
-Appointment november 8th, 2010
-american

are you from the us or canada

Sue, it appears that he's American.

Have any Canadians been called by Dr. Siskin's office lately?

I was treated at the clinic in Albany, NY on Oct. 6th. They found problems in the azygous and both internal jugular veins. They checked for May-Thurner but didn't find any problem. They are back to entering the right femoral vein and they "cross over" to check for May-Thurner. The doctor said that entry into one of the jugular veins is so much easier when they go in on the right side. I was surprised that they did a full trans-cranial doppler exam before the procedure... I knew they do one the day after the procedure. We arrived at the clinic, picked up the prescription for diazepam they had waiting for me at the Walgreens in the mall where the clinic is located, and waited a short while before getting the initial doppler scan. After the scan I was moved across the hall to where I got into a hospital gown and transferred to the bed. They took a blood sample to check kidney function. They gave me the diazepam and then I waited for it to kick in and then they rolled me into the room that they did the procedure. The actual procedure took about 70 minutes, after which I stayed laying down for a couple of hours. During this time I noticed that my vision was remarkably improved - everything seemed so much sharper, brighter, clearer and colors were so vibrant. I hadn't realized that my vision was so diminished! They offered to do the follow-up doppler scan that same day so I wouldn't have to come back the next day. The doctors and staff were wonderful. Since then I have noticed that I have more mobility in my left side and my fatigue is gone! I was diagnosed with PPMS in 1997 and have been in wheelchair since 2001. We stayed at the Marriott on Wolf Rd. in a handicap room and used Tri-City Ambulette as our taxi service - both were excellent!!!

Wow - thank you Greg, for the great description. I'm going to have the procedure by Dr. Siskin at the hospital next Wednesday and I needed to hear a good outcome for someone with ppms. I've been trying to keep my expectations down so that I might only bounce UP, but I'm not sure it's working! Getting there isn't something I'm looking forward to, but I can't wait to see what they will find. Sounds like it was worth it for you and that makes me happy.

This is all wonderful news ... I'm so excited even though I don't have a date!
Keep the thread alive.
Bobbi

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"A journey of a thousand miles begins with a single step." Lao-Tzu

FINALLY! We just got the call!

We originally called Albany on May 26th.
We got the appointment call on Oct. 18.
We are now booked for December 1.

We are Canadian so are booked for the clinic. The current pricing is $400 for the Doppler, $3,000 for the venogram, $3,000 for the angioplasty, and $400 for the follow-up Doppler, for a total of $6,800. If stents are needed there is an additional cost.

Now we just have to decide if we will go for stents if they are required. We have been of the opinion that we would get them if needed. If you don't get them then the whole procedure is for nothing. But lately we've been having second thoughts.

The knowledge base is advancing so fast and the risks, while not high, are significantly higher with stents. Maybe if stents are required it would be best to wait a year or so.
Then again, waiting is crazy since my wife's MS is progressing quickly.
Then again, stents are for life. There is no going back if complications arise.
AHGGGGG! Maybe we should just flip a coin. I think I'll just pray that stents aren’t required.

It's a great day today. I hope you all get this opportunity soon.

Bruce.

This is great news. Was this a concellation? I'm trying to keep track of who goes when. I get so excited for everyone.
Stents?? I need to think about that also. I see your wife will be getting the doppler before hand. What made you make that decision? Is that step necessary?
December will be here sooner than you think. Keep in touch.
Bobbi

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"A journey of a thousand miles begins with a single step." Lao-Tzu

Congratulations Bruce
I'm so gla for you and wish you and your wife the best.

brave

Bobbi,
Our appointment on Dec. 1st is not a cancelation as far as I can tell. TFau reported on Oct. 13 that Dr. Siskin's office told him that they were just starting the December appointments. I guess we got one of the first ones. I figured we were near the top of the list based on what other Canadians had posted.

For non-Americans who will be treated in the clinic rather than the hospital in Albany, it seems they are calling those who were put on the waiting list at the end of May. We called May 26th.

You asked about the Doppler before. Since we haven't had any imaging done I assumed that the Doppler was required. They did say that if the Doppler didn't show anything then they would still do the venogram since it was the "gold standard". This makes me wonder why we should pay for the Doppler before if we are getting the venogram anyway. I assume it is so they have something to compare to when they do the post-op Doppler and any followup Dopplers.

After watching the Dr. Haacke video (http://www.ccsvi.org/) I wish that MRV imaging was available.

Bruce.