Archive for January, 2011

Third CCSVI Procedure

Here’s the summary on my 3rd CCSVI treatment, provided for all of you trying to make decisions.

The “unforeseen events” that kept me from attending the CCSVI Seattle event: my symptoms took a nose dive on Jan 17, so I decided it would be best to avoid any grueling travel, and booked an appointment with Dr McGuckin for 1/28 in Seattle. I didn’t have any expectations, and no first hand reports yet from anyone treated by him. Feeling like a failed case, maybe incurable even. But I knew there were a few veins that hadn’t been evaluated yet, like the iliac, so that was my slim hope. When I asked if he would investigate all possible blockage locations he said “I follow the Zamboni protocol to a T”. And he had an approach I hadn’t heard of before, doing an ateriogram to capture the entire blood flow picture, not just the venous return side. He has done over 70 ccsvi cases, but he is in familiar territory with the central veins involved in CCSVI (like the jugulars, azygos and illiac) because his practice focuses on diabetics whose central veins need repair.

The venogram + ateriogram took 2.15 hours. I had emailed the Hubbard Foundation Registry form to his clinic nurse, Pat Shaw, but I didn’t have time to ask him if he would do it. When he came to update us after recovery, he seemed very pleased to present me with the registry page, where he could quickly walk me through the procedure. He had found and ballooned blockages in every vein on the list, including all the spots ballooned or stented before, which had restenosed. The left stented IJV was collapsed too, and wouldn’t respond to a balloon, so he had to insert another stent inside the previous 2 stents. I wanted a bottom line assessment of my situtation, he said I am still going to be prone to restensosis. But the good news was I had full speed blood flow from this procedure, and the left side that had no flow before was now equal with the right. For some of us, restenosis is going to be a sword of Damocles over us, until new inventions the dissolving stents are here. I will just keep my attitude & hydration up. I am relieved I now have a local option, so it won’t seem like a monumental decision if something feels wrong, I can just go to Tukwila for a check up. He also gave me a referral for a naturopath he treated for CCSVI, who is up on all the supplements and healthy habits we need to follow. This is nice to see the CCSVI-aware medical people expanding, because after CCSVI I’ve felt a bit like a medical orphan in my own town.

The cost at VAC for CCSVI treatment is the lowest I’ve heard so far, even less than foreign clinics.

Normally I would wait a couple weeks to report, but this is the best recovery so far. I didn’t have any serious down time like before, maybe because I wasn’t hammered from travel stress. Immediately my energy is up, my legs don’t feel like they are filled with cement, I can lift my feet higher. The painful extensor spasms that froze my legs in the morning are gone after 3 days. My hands and face are also very pink. My nails look so white in contrast, it’s like a French manicure.

The Hubbard registry is nice and simple. There’s an immediate patient benefit, I know exactly what has been done. Secondly my results will be part of the research. Consider taking this to your doctor too. Instructions here: http://hubbardfoundation.org/CCSVI_patient_registry_intro.html
They are asking for a donation to help cover the cost of running the registry, but this is one way patients can make the research happen, by supporting it themselves!