Tuesday, August 24, 2010


I have come across a bit of information on some venous stents that I wanted to forward to everyone. While not a solid solution yet for CCSVI it's obvious things are moving tin the right direction.

WALLSTENT® Venous Endoprosthesis with Unistep™ Plus Delivery System
What is it? The WALLSTENT Venous Endoprosthesis (WALLSTENT) is an implantable stent, an expandable, tube-like scaffold that is mounted on a flexible wire called the Unistep™ Plus Delivery Catheter. It is used in hemodialysis patients who have a blockage in a major vein near the heart called a central vein. This blockage could lead to failure of the graft that allows the patient to be connected to the dialysis equipment. The WALLSTENT is threaded into the narrowed portion of the vein, where it expands and holds open the vein's inner walls. The larger opening allows an increased flow.
From Boston Scientific on this stent: 
Wallstent® Venous Endoprosthesis with Unistep™ Plus Delivery System 
The Wallstent Venous Endoprosthesis is indicated for improving central venous luminal diameter following unsuccessful angioplasty in patients on chronic hemodialysis with stenosis of the venous outflow tract. Unsuccessful angioplasty is defined as residual stenosis ≥ 30& for a vein ≤ 10mm in diameter or ≥ 50& for a vein > 10 mm in diameter, a tear which interrupts the integrity of the intima or lumen, abrupt lesion site occlusion, or refractory spasm. The vessels that can be treated with the Wallstent Venous Endoprosthesis are the innominate and subclavian veins, ranging from 8.0 mm to 15 mm in diameter. 

This particular stent has been in use for years. This recent FDA approval was only for two very specific veins at the subclavian level. 

Wallstents are made of stainless steel, meaning that any patient getting them would not be able to undergo MRI studies after implantation, not a good thing for people with CNS problems. Article: http://radiology.rsna.org/content/204/2/343.short

Additional information: Summary of Safety and Effectiveness and labeling are available at: http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cftopic/pma/pma.cfm?num=p980033
Stentys self-expanding stent Video: http://www.youtube.com/watch?v=D8bx99ZA-eU
Interventional Radiologists have recently reported to patients that there are even newer stents with even greater radial pressure. Reminding patients that stent placement is rare anyways.

Tuesday, August 17, 2010

CCSVI Touching Base

Well its August 17th, two months since my initial phone call to the "clinic". I still haven't heard anything from them. I have been keeping up on others making first contact, getting scheduled and having the treatment. It appears the line has gotten very LONG. On a bothersome note it also appears I may be waiting longer than I anticipated but no one really knows (UGHHHH). Waiting and not knowing is a real killer.

As far as my MS goes the summer has taken its toll on me. My heat and fatigue issues are what I will rate a 8 out of 10. Definitely the worst they have ever been. I have very limited energy these days and NO heat tolerance at all. 15-20 minutes in the heat and I am done. Everyday seems like a test these days.......can be a bit frustrating.

On the medical side of my life I am off to see my Atlas Orthogonist tomorrow (awesome) and I am going for my 6 month to my neuro next week. In addition blood will be taken this week so they can test all my levels.

The fund raising is moving ahead and I can't thank everyone enough that has gotten involved. Keep an eye out for information on the Sedona, AZ hotel auction. It will be going up very soon! It will be very similar to the NYC one but 4 days!

More soon keep the emails coming everyone its great to hear from everyone.

Monday, August 2, 2010


FarmvilleFreak.com has joined in to help me raise money for my treatment and well as raise awareness on CCSVI and Multiple Sclerosis. I can't thank them enough for the generosity and support!