CCSVI treatment available in the U.S.!

[AlmostClever]

Got my follow-up call! It took a few weeks to get it so everyone should be patient!!!!

Doc. Siskin works the phone himself and seems extremely nice and down to earth!!! It was a great conversation!!!

He told me they're looking at September now.

A/C

[BooBear]

Clever, when did you make the initial call? Just trying to gauge how far off I may be from mine.

[AlmostClever]

Clever, when did you make the initial call? Just trying to gauge how far off I may be from mine.

Initial call: 5/12 (518) 262-5149

Call Back 1: 5/19 (nurse)

Call Back 2: 6/2 (Dr. Siskin)

[SandyK]

I received my follow-up call, as well. For weeks everything had been silent for me. Today I received Dr. Siskin's call, a date for Poland, and something for Cabo. Bam! I opted out of Poland and am waiting to get my answers about Cabo before I decide about New York.

It's been a great day!

[bmk1234]

Hi bmk

When u spoke to Dr. Siskin's nurse was it to book an apptmnt date, if so what date are they booking for today ?

Thank you
T

I just got off the phone with one of Dr. Siskin's nurses.
They have now completed 50 procedures, with very good outcomes.
She stated 2 had restenos'd, they then used stents.
A handful tested negative for CCSVI.
She was very positive about their treatment.
bmk

[/quote]

The discussion was to gather medical history. I call on the first day in the AM and I am scheduled for June 16.
bmk

[jr5646]

Found a map of Albany Medical Center... Page 5 = Radiology


http://www.amc.edu/Expansion/documents/ ... packet.pdf


20 Days to go... WooHoo!!!!!!!!

[jay123]

If you get a good price the Hilton garden Inn is located right across the street and connects to the hospital with a walkway. There are other hotels 5-10 mins away on Western Avenue which are a lot cheaper. Parking is validated at the hospital.
I'm sure there is stuff to see in Albany, but we just went in the night before and left right after the procedure. If you only get angio you will be fine to start heading home right away, if stents you might want another night.
Cooperstown (baseball hall of fame) is an hour away.

[bmk1234]

If you get a good price the Hilton garden Inn is located right across the street and connects to the hospital with a walkway. There are other hotels 5-10 mins away on Western Avenue which are a lot cheaper. Parking is validated at the hospital.
I'm sure there is stuff to see in Albany, but we just went in the night before and left right after the procedure. If you only get angio you will be fine to start heading home right away, if stents you might want another night.
Cooperstown (baseball hall of fame) is an hour away.

We are at the Hilton for $129/night. You need to book this through the clinic to get the reduced rate.

Dr. Siskin has told me the following for us that are flying in: Procedure is performed on day 1. You need to stay in the area for 24 hours after the procedure. On day 2 an ultrasound will be performed. If the Ultrasound looks good, you can then leave town.
bmk

[jay123]

Gary is always improving, he didn't do the follow-up ultrasounds when I was there.
The first time I got the $129 rate, my second visit the best rate was $179 (I think it was graduation week) which is when we booked a western ave hotel.

[Cece]

Hilton offers a pretty good best rate guarantee: if you can find the same room type for sale on another site for less than what they're selling on their site, they match the price and send you a $50 American Express gift card. You can check here: http://www.kayak.com to see if prices are cheaper somewhere else... If you find a lower price, you go back to the Hilton website and book there and then fill out the claim form within 24 hours of booking: http://hiltonworldwide.hilton.com/en/ww ... form.jhtml

[Trish317]

Hilton offers a pretty good best rate guarantee: if you can find the same room type for sale on another site for less than what they're selling on their site, they match the price and send you a $50 American Express gift card. You can check here: http://www.kayak.com to see if prices are cheaper somewhere else... If you find a lower price, you go back to the Hilton website and book there and then fill out the claim form within 24 hours of booking: http://hiltonworldwide.hilton.com/en/ww ... form.jhtml

I just left my job working for a hotel group for almost two years. One of the things that I learned is that, very often, online sites like Expedia or Hotels.com do not offer the best deals. Most of the time, the rate is the same as the rack rate offered directly through the hotel. Before I would ever book a hotel or airfare with an online site, I'd check directly with the hotel or the airline.

The hotels that I worked for would match the Expedia, Hotels.com, etc. rates as long as it can be verified. The only one we wouldn't match is Priceline because those rates can't be verified.

Having learned that, I always advise people to do some research before committing to an online deal. They aren't always deals.

[jenf]

Hi FlashHack,
I had an MRV done first; took the scan to Dr. Siskin. He reviewed it, thought there "may" be an area that showed stenosis, but also advised me that the MRV's are notoriously false. We scheduled a venogram/angioplasty for the following week, and during the surgery, it was discovered that there was no stenosis. This forced me to reexamine my diagnosis, so i signed up for a Natural History study at the National Institutes of Health. Two weeks ago I received a call form the doctor assigned to my case with a "most likely MS" diagnosis. My understanding is the venogram/angoplasty is the gold standard diagnostic tool for CCSVI. I've believed since the beginning of my illness that something else was at play. I still don't know what that is. I don't believe CCSVI is the answer for everyone diagnosed with MS; I'm a prime example of that.

[BooBear]

Got my call today!!!!!!!

Very good conversation with the doctor. Explained my MS history and current symptoms; received a full understanding of the procedure and protocol they will use.

Next step is to expect a call from the scheduler sometime in late summer. We appear to be set for a fall timeframe!

I did inform the doctor of my pending IR visit; she said if it turned out that something could be done here, just to let her know. She did state that they had a lot of procedures under their belt in Albany and are tracking the patients as well post-surgery.

Woohoo! Trish, I hope you are next!

[Trish317]

Got my call today!!!!!!!

Very good conversation with the doctor. Explained my MS history and current symptoms; received a full understanding of the procedure and protocol they will use.

Next step is to expect a call from the scheduler sometime in late summer. We appear to be set for a fall timeframe!

I did inform the doctor of my pending IR visit; she said if it turned out that something could be done here, just to let her know. She did state that they had a lot of procedures under their belt in Albany and are tracking the patients as well post-surgery.

Woohoo! Trish, I hope you are next!

From your lips to God's ears, BB! It was a week ago yesterday that he got the first call back. He originally called on May 18 but never heard back. So, on the 24th, I told him to call again. Then he got the first call back, finally, on the 26th. So, hopefully, he's going to get the call from the doctor soon. He's more patient than I am. To me, every day seems like an eternity.

[mshusband]

It can be found folks (treatment in the US) ... doctors are doing this procedure every day (yes, we still have to hide it ... but not for much longer) ...

I know for a fact of at least two treatments in cities where the procedure has been performed for the first time, just this week.

As Cheer says ... go local. It IS possible here in the US. Maybe not Canada (yet) but that's coming as well.