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!