Monday, November 22, 2010

T-Minus 5 days

Well 5 days until I am off to N.Y. Getting things ready as I write this. We are driving up this time. Being that I am not sure how I will be on such a long trip we are leaving plenty of time. Have to be up there Monday, get a good nights sleep and it all starts on Tuesday.

Tuesday     11/30
8:15 am  Research Consent 
8:50 am   Ultrasound
9:30 am   Appointment Dr. Siskin

Wednesday     12/1
 8:45 am  Appointment (neurology)

From there I would guess we schedule the date for the venogram and the treatment (real or not).

Starting sometime on Saturday I will keep a running report and will touch base as often as I can keeping you all up to date with news, pictures, and what ever else may come up.

Thanks again for all the support and well wishes along the way. It means a lot. we go!

Thursday, November 11, 2010


As most of you know I have been researching as much information on CCSVI and the liberation treatment as I can and how it relates to MS. I was so blown way by everything I saw, the videos, talking with people and what I read about that on the second week of June I decided to move ahead and get the treatment. I called and got on Dr. Siskin's waiting list  and I put up I have been waiting for news and my date ever since.

During my months of waiting and with my resolve intact a few new things came up involving CCSVI and MS. First was the HUGE snowball of what this treatment was doing for a lot of people with MS. Then all the great videos people have continued to put up. Some of the before and afters involving treatment are truly unbelievable. People are getting help even while the neurologists, pharmaceutical and others fight against CCSVI, its correlation to MS and the people getting treated. Please keep in mind not everyone with MS has CCSVI and not everyone is helped with the angio treatment. The percentages though speak for themselves…..

I was really disheartened by what I saw the US doing because of what I will call the "medical business influences"  Very little, to no press coverage to speak of and then out of no where things have started to take off. Press coverage, newspapers, TV news, and of course the internet. While not huge public push via the news a great start. Then the US entered into double blind studies seeking out people with MS to participate to help determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency.

After a serious look at everything about the trials, bouncing all the pros and cons off my wife, I have decided to take part in the trials that Dr. Siskin is undertaking in Albany N.Y. While it does have the possibility of putting off the actual treatment for me for a year or so,  I personally think this is bigger than just me and it's the right thing to do. These trials have to happen, they have to have the volunteers and they have to be done yesterday so everyone suffering can be helped and can get what they need. So with the help of my Facebook family and the information supplied here (Click Here) I got involved and signed up.

On Thursday November 4th I got a call from Dr. Siskin and we went over all the preliminaries, information on the trials and my history with MS. After we talked I was even more eager to get involved and take part. Tuesday the 9th was when I first talked with Barbara and started to schedule dates and times of what will happen and when.

I will be starting everything on the week of November 29th. There will be several appointments, evaluations and the test(s) over that week. Barbara wanted to talk with Dr.Siskin about the specifics and to see if we can fit the procedure in with all the other stuff with one trip. I should know more about that by the end of this week. Once I have all the specific times and dates I will get you all my plans. I also plan to have updates and pics of everything as it happens for everyone so keep an eye out as things get closer.

Very exciting! 

A couple notes:
Congrats go out to Bill for winning the Sedona Auction. 

If you have an extra $5.00 please take the time to donate to the trials. Denise is doing a great job at keeping this organized and we are getting closer to our goal. Click Here