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)