And Behind Door #3 We Have...........?

First let me start by telling you that we are going to play "Pop your balloon and then fill your bucket". LOL Seriously it is a technique I learned in my young college/leadership days while serving as a resident adviser in housing and residence life at Northern Michigan University. We practiced it in learning how to give and accept constructive criticism and feedback for self and team improvement. I am going to use it on you to lay out the facts/updates which one may find disturbing at times but then I will also share with you something that may lift you up.

Behind the mystery doors........synopsis of the 3 opinions so far

3 neurosurgeons have been asked for their opinion. The first in May, the second at the beginning of July, and the third yesterday. Two are from prestigious centers in California and one from a top center here.

Surgeon 1: (words via email)

There is certainly significant narrowing of the brainstem, but the distance between the two ANs differs from slice to slice on the various MRI scans. While the tumors could be "unchanged" in size, this really means that there has been no significant measurable change in the tumors of more than 1 to 2 mm, since this is within the range of measuring error. Thus a tumor that is 1mm larger may be called "unchanged", but could be impinging more on the brainstem. I agree that you should be concerned about brainstem compression, and if you did become sympotmatic, then you would likely require debulking of the left acoustic neuroma. We could do radiosurgery on the left AN, but if it did swell and you became symptomatic, then you would require surgery for the left AN.

The main symptoms would be weakness or numbness in the arms or legs or face, balance problems, or potentially some speech and swallowing difficulty. If that occurs either from tumor growth or swelling after radiosurgery, then surgery would be required.

You could do surgery for a debulking followed by radiosurgery for the resiudal tumor, and that is my preferences in NF2 patients such as yourself. The hope of the debulking as opposed to a complete resection would be that a debulking followed by radiosurgery would have a better chance, in my opinion, of preserving facial function.

As far as timing, the obvious choices would be to
1) wait until the tumor caused symptoms, and then treat,
or
2) treat now before symptoms would occur.

Number 2 may be lower risk since it is often easier to operate before the symptoms are severe, but there is a risk that the surgery would cause problems that would not otherwise occur for several years if we chose to observe the tumor instead. There is no perfect answer, and I would be willing to go either way based upon your decision.

Surgeon #2: (my synopsis based on the captioned dialogue in the appointment)

Yes. I should not fool myself into thinking I can escape surgery and the present situation. Surgery should be done at a convenient time but not wait until next year or the winter (2008). He agreed that the fall (October or November) would be a good time.

His proposition is to do a "debulking" of the tumor. This means removing only a portion and not the whole thing. His plan is to remove the supposedly "dead" necrotic center (hollow it out) and to stay away from the nerves and brainstem. In addition, he would remove the meningiomas (different tumors next to the big one) and part of the cerebellum to allow the brainstem more room so it is not as compressed (keep in mind that the tumor on the left is still there and there would be some of the right tumor remaining).

His approach he feels is less aggressive where (although not a guarantee) it is safer in regards to preserving the functions I have with facial, vestibular, and the brainstem. The surgery would be 3-4 hours.

At a later date, I could consider radiosurgery on the left tumor as there would be more room to allow any possible swelling of the left tumor after treatment. Or I could get surgery on the left tumor when it became necessary.

Surgeon #3: (spoke to Harley on the phone and the following is what Harley related to me)

The surgeon looked at my MRI and asked Harley if I had any sort of vision problems. Harley told him I had and the surgeon inquired further. I have had optic nerve swelling which was diagnosed in February 2005. I discovered in the reports that we received in the mail on Monday that the ophthalmalogist documented this condition as Papilledema (although I was never told that by him) and I have been prescribed and taking a medication known as Diamox since that time to keep this swelling at bay.

The surgeon told Harley that if I do not get surgery soon, I am in danger of going blind or dying. Lovely news, eh?

I was very upset. I think the blind part is what really upset me and created a new panic or fear (or at least deeply ripped open an old wound).

This surgeon's recommendation is to not address the tumor on the left but to address the tumor on the right as surgeon #2 proposed. However, surgeon #3 feels the tumor on the right (the larger one) should have a "COMPLETE REMOVAL" instead of a debulking. This would mean scraping (peeling) the tumor off the facial and vestibular nerve and the brainstem. I am not comfortable with this plan.

The reason for this is that the surgeon feels the tumor will grow back within 4 years and I would have to get surgery again. Although I have referred to this tumor as "dead" or "dying" really we don't know that. We are just basing it on the fact that it was the goal with the first treatment, it has stopped growing and has been stable for 2 years, it is showing signs of cell death on the MRI from the very center, and I have made many improvements and not been having the symptoms I had the first year when I could not function off of steroids.

The surgery would take 6-7 hours from what I understand.

Ok. Now I have to fill the bucket.

Truthfully I do not have much time to write all the glorious things I have experienced, been thinking about, and wanted to share with you. So I will just tell you a few quick ones. Perhaps when I leave out of town to visit family on Thursday I will be able to write out some of this to type later if the ride is not too bumpy. ;o)

Good news: I am really fit and have continued to make remarkable improvements!

As some of you may recall, I took a bad fall in the driveway last April and sprained my ankle. It has almost healed now so I have been able to commence running and water aerobics. In fact I went to water aerobics just yesterday and thoroughly enjoyed it! It is a great sensation for me because I can do moves in the water that I would not be able to on land! Also, I really like the water and it is comfortable to be able to do this in clear water not over my head. If I am swimming I have to wear a mask because without touching bottom and if my eyes are closed, I get the disoriented feeling of vertigo.

I restarted running in the end of June. I actually ran the furthest I have run for the year and quite possibly since before treatment! (I am not sure as I went on a long run in March 2006 but succumbed to a horrible migrane as the optic nerve swelling returned when we tried a taper. I can't remember exactly how far I ran back then as the headache won over my memory of distance). However, little Katie had a hard time after that run as she had surgery in 2005. Her leg was sore so I had to give her a few days off and then it got too hot to take the dogs running. Therefore I took a break from running due to the hot weather but have since gone for another run last week.

The BIG NEWS..........my hard work, endurance training for the marathon last fall, weight lifting this year, and training on the BOSE ball balance device has paid off! Harley and I celebrated our 7th anniversary on July 16th by doing something I would have thought ordinary years ago but was really special to me now. I really wanted to know if I could hike my old stomping ground Tiger Mountain. It is the closest mountain/elevation hike to the Seattle area.

I did it! It was not that hard either and I was not that sore afterward (just a little the day after). In fact I hiked up with no poles and then used the poles on the way back down. At the top it was steep with loose gravel so it was really challenging for the small part of that going down even with poles. I had worn the tread off of my Keens already so Harley had to hold on to the hydropack on my back for the section going down.

My good friend Yumi (who I actually met years ago on top of Tiger Mountain) took me to Rattlesnake Ledge hiking trail last Saturday and it was fantastic! I had never been on it and it is now my favorite closest mountain hiking trail! The Pacific NW woodland on the way up is so magical and enchanting and the view at the top is phenomenal!!!! It totally surpasses the views from Tiger (before the trees grew at the top!!), Little Si, and Big Si all put together.

One can see the big guy from a perspective directly across (4000 foot Mt. Si which has been one of my favorite challenging hikes over the years). I still do want to do Big Si again (hoping I can fit it in before this surgery). I have not been on that mountain since spring/summer 2003.

Since I am talking about hiking and my friend Yumi, I again want to congratulate her and share the good news of her recent feat and accomplishment with you. On the weekend of July 6th-7th, Yumi conquered our highest peak and glory Mt. Rainier. Yay!!!! Woohoo! Way to Go! She has been seriously training for 2 years now and her hard work has paid off. She has some great photos so if we ask really nice maybe she will share her link with us for posting on here.

My consultation with neurosurgeon #4 will be on Monday August 6th. So until then, have a happy remaining July and happy summer!

- Beck :o)

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.
AND
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)