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Hi, Just wondering if anyone was considering a port for the Tysabri infusions. Any long term infusion will be hard on the veins after time and I spoke to a vascular surgeon who recommends it. Any insight?

The nurse who did my infusion told me about the port and asked if I wanted one. I asked more about it, and she said it was only needed for people with hard-to-find veins or who got poked a lot. She said I had well-anchored veins (that don't move around a lot), and there were several long, straight stretches. She looked and tapped for a few minutes and was making me nervous, but she said she was just being careful to pick the best one available and that there were several good candidates. I was going to ask a doctor about a port. It would be nice if the port made it easier to do the home infusions, although I wondered if it had any components that would want to move around during an MRI. That would rule it out for sure. If I do have monthly infusions for the rest of my life, it would be good, but hopefully a cure or just-as-good oral method will surface during this decade.

I am. I have an appointment on January 7th to have one put in. I have been having a really hard time with my infusions the past 6 months at least, possibly longer. I have been on tysabri for over 2 years and my veins were small and roly poly to begin with. I am super nervous about having this thing in my chest.. but right now it seems like my only option.

NiftyBunny wrote:I am. I have an appointment on January 7th to have one put in. I have been having a really hard time with my infusions the past 6 months at least, possibly longer. I have been on tysabri for over 2 years and my veins were small and roly poly to begin with. I am super nervous about having this thing in my chest.. but right now it seems like my only option.

Having an infusion port installed long-term is not without consequence. Dr. Sclafani discussed a case where a woman had a chemotherapy port installed which had damaged the endothelium of the subclavian vein. Please see his case study from Aug 7, 2011 as well as the discussion that followed for several days afterwards. The port had been in place for an 18 month treatment with low dose cytoxan and then left installed for an additional 20 months.

Here are the three entries from the "Dr. Sclafani's Case Studies" post.

August 7, 2011
http://www.thisisms.com/forum/chronic-c ... ml#p172921
A case of a prominent emissary vein, a stenosed jugular vein, and an obstructed subclavian vein. The criticality of balloon positioning is discussed.

August 13, 2011
http://www.thisisms.com/forum/chronic-c ... ml#p173571
A continuation of the obstructed subclavian vein case.

August 18, 2011
http://www.thisisms.com/forum/chronic-c ... ml#p173925
The completion of the obstructed subclavian vein case, now referred to as the case of the port stenoses, and an azygos dilemma.