This Is MS Multiple Sclerosis Community: Knowledge & Support

does the center accept medicare? is it for testing, as well as liberation procedure?

Glad to hear of these small contacts with Holly & that she is not entirely lost under the workload.

Patrice, early January? Good luck!!!

Patrice - sending you good thoughts and hopes for improvements after your Jan. appt with Dr Sclafani! I am scheduled for the end of Jan. and would be very interested in hearing about the details (hotel, taxi, airport, good places to eat, and of course - the procedure!

Hi Patrice, I'm assuming you are the same Patrice that I was in Poland with. Although our improvements didn't last, it was a fun time with everyone in our Tychy group!

Wishing you a good trip and lasting improvements. If you are staying at Hotel LeBleu, the staff is great and breakfast is included. They bring breakfast to your room every morning, you pick the time. There is also a place nearby called Brooklyn Bread that is phenomenal. The hotel have take out menus in your room for nearby restaurants and we had a great meal at the restaurant there one night.

Keep us updated!

Sue

Has anyone going to Chicago received an appt date yet? I live in Indiana and have not heard anything from Holly. Thanks.

I sent in all the required info on 12/14 but have not heard anything back yet.

Now that Christmas is over, I can concentrate on my trip to Brooklyn... Can anyone tell me which airport I should be flying in to (Laguardia, JFK, Newark)? Thanks!

This amused me, it's from TripAdvisor, "Brooklyn Forum: Best airport to use to get to Park Slope." Each airport was suggested a few times, no real consensus, but maybe it depends on if you're taking a taxi or the subway. http://tinyurl.com/36hhxue

I_Hate_MS, you'll have to verify with Holly, but yes they're set up to take Medicare. Testing is the doppler ultrasound done at King's County Hospital. Are you close enough that you might want testing only and then waiting on the procedure itself?

Anamishguy, yes, I know someone who is set to be treated by Dr. Makris of AAC in Chicago, in fact I am on pins-and-needles to hear how it goes!

I was tested and treated for CCSVI by Dr. Sclafani at AAC in Brooklyn, in November.

Myself and two attendants rented an accessible van and drove to Brooklyn. The drive to and within Brooklyn was much more harrowing than the procedure itself!

I stayed at the Best Western Gregory Hotel on 4th Ave because they had a fully accessible room with a role in shower. I paid about $130 Canadian dollars per night. I would recommend it if you need an accessible room. Once you're there you can walk to dozens of restaurants and even a liquor store which we needed badly after the drive! They also have valet parking for $25 a day. Well worth it as you don't want to drive unless you have to.

The day before the procedure, I had my ultrasound at Kings County Hospital. Dr. Zinn, who did the scan was great! He explained the entire scan to my attendant. She was just thrilled to see the images! I was impressed, but not surprised, at his willingness and ability to be teacher and doctor.

I arrived at the AAC clinic in Brooklyn on Saturday morning. I immediately met with the receptionist who promptly took my credit card. It was good to get the payment out of the way at the beginning. It was a great relief to know my credit card had cleared!
I then met with one of the nurses who gave me a gown and a lovely hat. Once changed I met with another nurse who's spent about 45 minutes with me explaining the procedure, discussing my medication and postop procedure. She also gave me my first injection of antithrombotic medication. I would take this once a day for three weeks.

I got the prescription filled at home and brought several syringes with me.

I then met with Dr. Sclafani for about another 45 minutes or so. We discussed the consent form, the procedure, my medical history and postop care.

I was then escorted into the treatment room which looks a lot like an operating room. Two or three of the nurses helped me on to the table. Everyone was very helpful and supportive. I was strangely very calm. I felt 100% secure and confident in the hands of these professionals. Anyway, I don't think anyone needs to worry about the competence of this group in Brooklyn.

The procedure itself, venogram and venoplasty took two hours. They told me it would probably be between one and four hours.

There was always at least two nurses, Dr. Sclafani and another doctor in the room during the procedure. I don't remember anyone's name. Once the treatment was over, Dr. Sclafani showed me some of the images on the monitor. I was then taken to another room for another hour or so were my vital signs were monitored. My attendants were allowed to keep me company. Again, a nurse was always with me. They gave me some juice and a sandwich as I was famished!
I felt perfectly fine after the treatment and went back to the hotel to rest. About two hours later I felt as if I had been run over by a bus! No pain just exhaustion! The next day was the same. As per Dr. Sclafani's orders, I stayed at the hotel for an extra night to rest and to make sure there was no bleeding at the insertion site.

We went home the following afternoon. I was exhausted for about two weeks once home. I was not expecting to need so much recovery time.

For anyone going to see Dr. Sclafani, in Brooklyn, I would say you will be in very good hands. They are a very competent and caring bunch!
I was not expecting the team to be so professional and organized so early in the game. There was no sign of any fumbling at all.

If anyone has any specific questions you may PM me.

A very big thanks to you Dr. Sclafani, and to all of your colleagues!

Sincerely,
Lisa

Thought I'd let Dr. Sclafani weigh in here for awhile (plus, yes, I'm swamped) but I'm back. Thank you for the kind words and please, anyone who hasn't heard back from me, feel free to PM me if you haven't already. Particularly PM me if you're a self-paying or Medicare patient interested in being treated by Dr. Sclafani January 11th or 12th, since these two new dates have just recently become available and January is otherwise booked solid at this point. (Unfortunately you would need to be either self-paying or Medicare for these two particular dates for reasons I won't bother you with here.)

Quick, someone snatch up the 11th or 12th! Those are a Tuesday and a Wednesday, not the usual M/F/S.

Dear Holly, I know you are perhaps toxically overworked (!) and in dire need of that assistant. The status of my insurance company must be low on the list of priorities and I don't think you have an answer yet. But when you do, shoot me an email, ok? Day or night....

Hi Sue, Cece, newlywed4ever, Holly and anyone who I've left out: I'll post info about Brooklyn when I have new stuff to add. Sue gave some good tips that sound really helpful (yes Sue I'm the Patrice you met in Tychy Poland)!

At the moment all I have to add is that my doppler ultrasound is due to happen at the AAC clinic in Brooklyn and not King's County Hospital. I'm not sure why that is (maybe scheduling issues).

I'm bringing gloves, scarf, parka but I'm borrowing a friend's cold weather hat---brrr. It looks like it's colder there than the SF Bay Area!

Patrice

i'll be in brooklyn 2/3 -2/5. anyone else scheduled then?

i am interested in towson, md... about a five hour drive... ny is too far, i can't fly anymore

So, for those that are having/have had a 2nd procedure with Dr. Sclafani, is it $10K as well? And that includes everything? Or is it less for subsequent procedures? Or does it depend whether Dr. Sclafani did the first procedure himself?

Does anyone know if all the doctors in the AAC network are charging the same amount?