Thursday, July 12, 2007

Want to see my brain?

I am going to forget who I am sending what to. So to make it easier, I am going to try posting the updates here. I promised you all many months ago (or is it over a year now?) that I was going to post a picture of my MRI. This a slice of the latest scan from April 2007. I had not been brave enough to look at the cd for over a year. This image was made possible by Harley who loaded it onto the computer for me.

As you can see (all the white are tumors), I am in a tight spot (or a pickle). That thin dark spot squished between the two white blobs is my brainstem. So there REALLY is NOT room for any more growth. Therefore brain surgery is in the forecast within a few months (the fall....probably October).

I am getting confused looking at the image now as the tumor on the right is the one I had treated and should be the larger one with the dark center. Whoa! Is my mind tripping or did the image somehow get flipped around wrong?

Anyhow, the latest proposed plan of action is to scoop out the black center of the one that was treated with radiosurgery (which is the larger tumor). The reason only part of it will be removed (referred to as a debulking procedure) is that -

a) the tumor has been stable and showing necrosis (cell death) for a couple years now. Therefore, hopefully it really is dead and we do not have to worry about a regrowth from tumor cells left behind.
b) trying to peel the tumor away from the nerves (facial and balance) and brainstem can result in permanent damage to those structures and their function which is what we want to try to avoid.

Oh yeah, and it has been proposed to also pluck out the other tumors (smaller white blobs) on the same side that are touching the big fella. Those are a different kind of tumor called "meningiomas" which should be in the lining of the brain and not in the brain tissue itself. To access all this, a small chunk of my cerebellum may be cut out.

Seriously though, I experience many good things and natural "wonders". After the appointment Monday we went to one of my favorite places in Seattle (the Volunteer Park Conservatory) and I was tickled by tantilizing visual wonder! I was in such awe over the colors, shapes, patterns, and textures of all the plants and flowers there. I felt as if I were in a fantasy dream!

I have many more of these type of experiences but I just have not had a chance to write and post about them. I am busy researching, preparing, and taking this all in.

On a positive note I am in really good shape/health. Heck if I did not have this dang NF2 maybe I could train and climb Mt. Rainier! Alas my balance will not allow me to do so but given the picture above, the doctors are pretty amazed that I walked a dang marathon and climbed the city's tallest skyscraper!

My focus starting in 2007 has been to work on my balance and regaining my muscle. My plan really has been to prepare to return to scuba diving and also to become more of an avid runner. Well the diving is going to have to be on hold again but at least I have been heading in the right direction. I will not be able to lift weights and do strenous things until the surgical area heals. Thus I am trying to do all that now in preparation for the recovery phase.

Honestly it cannot be predicted with guarantee what will happen as far as complications and side effects. Everyone and every situation with NF2 and these tumors are different. I really only expected to go deaf after radiosurgery and did not imagine I would not ride a motorcycle anymore, not rollerblade anymore, not hike like I used to, not jump into a lake or pool with my eyes closed, hold off diving for now 3 years, drink out of a straw for a year, have half my face freeze up, have visual problems, and yada yada.

Anyhow, with any sort of illness and surgery it is always a better recovery and outcome if one is healthy and fit. It makes sense! So this is my strategy and what I am working on in 2007.

Feel free to ask me any questions! :o)

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