Sunday, June 28, 2009


NIH website

It is set! Over a week ago I was contacted by the NIH NF2 study research nurse I had been cooresponding with via email. She invited me to become a participant in the study and this weekend I received my packet of information and consent form delivered by FEDEX. A schedule of appointments and tests have been finalized and we will be flying out to Bethesda, Maryland on August 16th.

All I need to do now is sign my consent form to send back, confirm the flight arrangments, and get together all the records I have had since 1999 which were not sent out already - only my most recent MRI images since 2004 were reviewed. (that is quite a job as I have been seen by many specialists at several facilities. Hence, my records are housed all over the place and it is quite a bit of work to get it all organized and together.)

So what does it mean that I am in this study?

There is not a direct benefit to being part of the study and nothing magical will be going on with the hope of shriveling the tumors. This is simply my contribution to medical science in regards to understanding the nature of the disorder NF2 - how fast do tumors grow and what factors may trigger growth?

However, the benefit to me as a patient of NF2 is that there are researchers and a team within the country focused on this one disorder. I am an interesting case with many issues/side effects caused by the tumors of which are permanant. I will have medical doctors trying to determine the cause of these issues and a way to prevent them for future generations. Also, I will have a full battery of tests to understand my system as a whole done in one facility instead of all over the place. Further, it has been several years since I had some of the tests performed so it will be nice to know what my status is and to understand the progress I have made.

I will keep you posted on how the study goes.

P.S. - I have been taking the Bio Propolis 30 supplement from New Zealand for 4 months as of June 20th. By the time I have my next MRI during my visit to the NIH, it will be almost 6 months since my last MRI which revealed growth. While the Propolis is not expected to shrink tumors (at least in such a short period of time), it IS known to show tumor stability. So that is the results I am hoping to see when I go to the NIH - NO NEW GROWTH.

From there, we will see what direction I will be moving in. In my doctor visits in March and April, I was told I need another brain surgery as on the MRI we could see that a tumor near the brainstem grew significantly and merged with another one already causing significant brainstem compression.

Really it is quite amazing I am the same person as is reflected by the MRI images. The pictures of my brain look pretty scary. Instead of dwelling on that, as it can really emotionally get to you, I like to pride myself on being a medical marvel!

So let's see what news the NIH visit brings.


Jamie said...

Right on, Beck! Exceptions are the rule with NF2!

Sarah said...

Great! Enjoy some of the NIH cartoons on VADLO search engine!