Friday, October 22, 2010

Back to the Starting Point

Well I’m pretty much back to where I was before going to Poland for the venoplasty procedure. My symptoms are the same as they were pre-Poland.

It has been quite an adventure with twists and turns at unexpected moments. Despite my best efforts to stay equally content with any outcome, I certainly felt excited when I had improvements and confused when I experienced a couple steps forward followed by a step backward.

I’m trying to not get discouraged because I think my improvements, although short-lived, indicate that there’s hope. Since the procedure helped me for a few months I’d like to find a way to have another treatment that makes the positive changes permanent.

Slowly the reality is setting in that I’m back to the baseline of where I started from. Sure I’m bummed that improvements didn’t stay longer. It was nice living with more cognitive abilities, more energy and not feeling overwhelmed when there more than two people in the room with me. I even went to a museum and wasn’t over-stimulated by the masses of people there!

I went into this saying that as long as it didn’t make me worse, and hopefully would stop progression of the illness, I’d be okay. So I’m sticking to my beginning premise just as my symptoms have returned to their original starting point.

Tuesday, October 5, 2010

Dissolvable Stents!

Abbott Labs is enrolling patients in Europe for Phase 2 trials of a dissolvable stent for arteries. I mention this because this stent could be quite useful for people with CCSVI (and MS).

The resorbable (yes, that's a word) stents are made of corn starch and after two to three years will biodegrade completely. At least that's what the manufacturer intends, and the trials will confirm if the stents disappear in fact.

Since my improvements are slipping away I've begun to read more and more about the options available to me. In particular, I'm trying to get as much information on the potential risks and benefits. There isn't a lot of data to pore over, and I'm constantly reminded of my status as "guinea pig."

Unless I would prefer to take on the role of tortoise and slowly crawl down the path as I grow older and rabbits hurry past me. I could watch as the world around me moves forward with CCSVI treatments. I don't have anything against tortoises mind you, but moving at their speed can be as painful as living with a chronic illness.

So dissolvable stents would take maybe five or six years to get through trials if things go smoothly and would then need FDA approval. Did I forget to mention that the current trials involve stents placed in arteries, not veins? But perhaps using the stents off-label would ensue after a period of time if all goes well.

Alternative options for my second procedure could involve venoplasty with a large size balloon. Dr. Tariq Sinan has had some success with this procedure and may share some clinical data about his work in Kuwait. My concern is about over stretching veins that have thin walls (unlike arteries that have thick walls).

I'm publishing this post without leaving it to marinate in juice overnight and then edit the words after a good night's sleep. True, you caught me feeling cynical about the attractiveness of any potential options for me right now. I try not to write when I'm not feeling optimistic, but sometimes I just need to break my own rules.