There are three possible paths to the tumor site, two start behind the ear, and one above; which one is used is up to the surgeons involved and whether there is an attempt to preserve hearing, that is save the nerves from the ear to the brain. For a brief description of the surgical routes See: http://anausa.org/treat.htm

The opening will be about the size of a half dollar. The tumor is removed by scooping it out in small pieces, kind of like scooping out a melon to the rind. However, unlike a melon, the tumor has a very thin and delicate skin (if any at all), and the tricky part is how much it is adhered (which is actually micro-invasiveness) to nerves and brain tissue. For drawings of the technique, see: http://itsa.ucsf.edu/~rkj/Illustrations/ANSurg.html

Can Val's hearing be saved in that ear?

No. Because so much damage has been done to the nerves due to the pressure of the tumor, no attempt is made to save the nerves when the tumor is this large. It is much more important to remove as much of the tumor as possible to prevent regrowth, so the nerve fibers are removed with the tumor. Since the nerve sheath within the bony canal is the location of the origin of the tumor, there is no way to actually separate the tumor from the nerves in that location.

Will the extreme size of the tumor cause problems in the surgery?
Have the surgeons ever seen/done one this large?

Well, no and maybe. The surgical technique is no different nor is the opening larger, it just takes longer. The difficulty with it being so large is that pressure on and deflection of brain tissue and vascularization is much higher, and the adjacent facial nerve is more stretched and frayed, and therefore more difficult to salvage. See: http://itsa.ucsf.edu/~rkj/Illustrations/FNillus.html

Apparently this surgical team has not seen one this large, but again, the technique is no different. An MD in Italy that Val knows writes that his hospital has operated on ones that are much larger than Val's.

How long is the surgery?
How long will Val be in the hospital?

The neuro-otologist said he expects the operation to last about 12 hours. (This is brain surgery after all!) About four hours will be preparation, anesthesia and entry into the skull, so the neurosurgeon will probably start his work about noon. Toward the end of his part is the most delicate work, after the bulk of the tumor has been removed and he is separating the last of it from the brainstem. The last two hours or so the neurotologist will return and close the opening. Please include both surgeons, the anesthesiologist, and operating room staff in your love and prayers.

Barring any complications, Val will be in in intensive care for a day after the surgery, and remain in the hospital for another five days. (She has a friendly bet with the neurotologist she can get out in three. He said "Well, maybe four.")

I thought you said ANs are slow growing. How can it be this large?

ANs seem to grow more slowly when they are small and somewhat faster as they get larger. But at an estimated 2mm growth year, the neurotologist said Val's has been there for at least 25 years, possibly a lot longer than that.

So for those of you who suggested that if Val had been eating meat she could have prevented this tumor, back when it started growing she was eating meat; McDonalds hamburgers in fact! 

What causes ANs?
What caused the recent increase in symptoms?

They don't know what causes ANs. This type is called "spontaneous" AN.

The size of the tumor may have reached a critical point in it's pressure on the brainstem, and as noted above, the larger it gets the faster it grows, so symptoms would increase at a more rapid rate. Also, in the MRI images there appears to be a dark area in the center of the tumor; the doctor said there may have been an internal hemorrhage in the tumor that caused it to balloon in size recently.

Will/can the tumor regrow?

Anything is possible. The likelihood of it depends on how complete the removal is, and that depends on how much the tumor adheres to the brain tissue. Those of you who are meditating for assistance to Valerie please envision the tumor separating easily and completely from all surrounding tissues.

In the medical literature I see mention of possible difficulty with neck muscles and other tissue as the entry site heals and scar tissue fills in.  Can something be done about that?

This surgical team, unlike many others, takes care to save the bone that is removed and replaces it during closing. This helps greatly with proper re-attachment of tendons, and sealing of the skull against the pressure of cerebro-spinal fluid.

Are you going to do an "after" MRI series?

We'd love to, but at $1600 a set it's not something we'll do for amusement. With no health insurance we're going to have enough problems paying off the tens of thousands of dollars this will cost already. A follow-up MRI is necessary sometime within one to five years. If the website is still here and you still are interested, we'll put the images up here.

How handicapped will Val be after the operation?

Barring serious long-term complications, less than she is now. She will be totally deaf in her left ear, but the hearing in it is already well below anything useful. Her dysequilibrium, and reduced motor control on her left side should disappear with the elimination of the pressure on the brainstem. We (humans) can get along fine with balance signals from one ear. The numbness in her face should also disappear if the facial nerve can be salvaged during surgery, or rebuilt with nerve fibers from elsewhere.

How is Joe doing?

Oh boy, how do I answer that? On one level, I'm doing fine.
Doing what I have done most of my life - whitewater rafting in the wilderness, flying paragliders, climbing, caving, high angle and river search and rescue work, flying in helicopters, driving fast - I have come to an acceptance of the risks, and made my peace with the fact that I could be injured or killed. I know that there is a chance that Valerie may not come out of the hospital alive, or come out seriously ill or handicapped. On that level I accept that as well and am OK with it. After all, our lives are the currency we play with in this world - the chips that are on the table; our time and how we spend it is really all that we have. I try to live so that I am complete with my life at any given moment (although I certainly am not always successful in that!), and our spirits have set up this lesson for both of us however it turns out. Researching the information and doing this web page is good therapy as well; it helps bring to light things that have been long hidden.

On another level, it feels pretty bizarre, a "discontinuous event" I believe is the terminology. I'm not sleeping as well; waking up at 6:30 or 6AM (pretty tough after going to bed at 1AM) and not being able to get back to sleep. Those who know me well know I'm a night owl, and how unusual it is for me to be up and around at 6AM.

I am very concerned about Valerie and her physical and spiritual struggles. This is not a procedure that she will come home from and feel fine in a few days; she may have a long difficult rehabilitation. There is little I can do about her surgery and its direct outcome, so I do my best not to spend time thinking about that.

I will support her as best I can in her rehabilitation, so I can have some effect there. There is some selfish worry on my part that my friend and lover and partner may no longer be quite the same person I so love to be with, but that is my lesson alone to learn. Val has the same concern herself, both for herself and for me. We do know, however, that many other people have gone through this same operation and are doing fine.

My biggest concern is probably the tab for all this. I know that financial difficulties can be hard on a relationship, and may in fact be the largest single cause of divorces. At what I earn, it would take several years of giving the doctors and hospital every single cent of my wages to pay the bill, not counting the interest that will be accumulating, and of course we cannot live on nothing for those years. So here again the lesson is to not worry (it's worse than useless!) and to trust the universe that we will be provided for.

How can we communicate with you and Valerie?

You can send an e-mail to joenval@raccoonhouse.com Feel free to ask questions that are not been addressed here. I'll post them here with answers so keep checking back here and on the Updates page.