Re-growth (after 10 years) is not cool

[LCT]

Hi everyone.  I am a 33 year old male from Houston.  This is my first post here.  I have read posts by others many times, just never felt compelled to register and post myself – until now.  First, let me give some history.  In 1996 (I was 23) I was diagnosed with a 4.5cm AN on my left side (only symptom was my fading hearing).  My tumor was surgically removed here in Houston 1 month later.  The surgery was 14.5 hours, and what I would consider extremely successful.  Of course I have no hearing on my left side, and I have partial facial paralysis, but the facial tone that I do have left allows me to have a very high quality of life (just lots of Celluvisc eye drops).  Post-op I have had MRI’s every 1-2 years with absolutely no regrowth whatsoever.  I went and had an MRI in July 2005 for a life insurance company.  Much to my surprise, I have another small AN growing on my left side again.  LESSON:  Don’t stop getting post-op MRI’s ever!!!!  I met with my surgeon here in Houston (I really trust him after my first surgery), and he suggested that I not rush to a decision and monitor its growth for 6 months.  Well, it has been 6 months and I just had another MRI.  The tumor has grown just a little bit, and is now approximately 11mm.  My surgeon says if it was in his head (and if he was my age), he would wait another 9 months and have another MRI.  I have opted to do this.  I would like some opinions on my situation.  Here are the concerns and ideas I have “kicked around� with my surgeon.

The new tumor itself would be very easy to remove surgically.  However, due to my weakened facial nerve I am at a very high risk for complete loss of facial nerve function on that side following another surgery.  My surgeon is very open to radiation treatments,  I can’t believe there are surgeons that won’t consider both alternatives.  Anyway, here in Houston they use the Novalis machine.  There is also a CyberKnife machine in San Antonio I believe.  The doctors I have spoken to feel that either would do the trick for my tumor.  Again, my surgeon is open to all my opinions.  Our concern with radiation is also the facial nerve.  I never see any posts on this, but I have been told that because my facial nerve is already damaged, that there is a possibility that radiation could further damage the nerve as well.  Basically, I am trying to avoid a facial reanimation surgery.  For now I am leaning towards waiting it out as long as possible, and then requesting the Novalis machine.  Any thoughts would be appreciated. 

[Mark]

LCT,

I'm very sorry to hear about your AN regrowth and I can imagine how disappointing that news was. It is certainly something that all of us who have been treated worry about to some degree , whether we went the surgical or radiation route. The lesson about maintaining a consistent schedule of MRI follow up is an excellent one and something everyone needs to do.

In terms of your concern about radiation and the facial nerve, the statistics are pretty compelling that radiosurgery presents far less risk to the facial nerve than surgery in initial treatment. I would assume that would hold true in the case of one that was previously resected and regrown, but I've never seen any study that specifically isolated that category. You might want to post that specific question over on the Cyberknife support group message board for doctors and see if one of the physicians that monitor it will respond.

 In general, radiosurgery using a fractionated or staged approach displays a 99% facial nerve preservation and I believe it is slightly less for one dose protocols such as with GK. Both Novalis and CK can do FSR and I would agree that either would work well, but would favor the CK for it's greater level of accuracy which would limit collateral exposure to the facial nerve.

Hope that helps

Mark

[Kathleen_Mc]

LCT: like yourself I had a 15 hour surgery to remove a large left A.N. when I was 23, I lost my hearing, balance and facial functioning. I was told it was only necessary to have CAT scans for follow up and thus didn't have another MRI until 7 years later (it was done for another reason), I wasn't told until after another MRI a year after that of my "new" A.N., and that it had grown some in the year inbetween. I had just had my son and wanted another child so I went into the "watch and wait" programme. I stayed in that mode until things at home were such that I could "be sick" and this past fall I had the tumor removed surgically. I was offered gamma knife but declined. I can understand your concern to preserve your facial nerve but watch that you don't wait beyond the size that they can still use gamma knife.
Part of my worry was the growth rate, although the "regrowth" was growing very slowly and the average rate of growth is 1-2 mm per year I have difficulty with that stat., I was told at 23 that they couldn't understand how an AN got so big in someone so young given what they know about it's growth rates so I was really concerned that the regrowth would be an "exceller" too!
I guess it all depends on what we each are comfortable with what we will do. My surgeon advised me to stay in the watch and wait mode longer but I couldn't stand the stress and worry anymore, some people can easily cope with knowing there's something growing in thier head, I couldn't. If you can that's great 'cause although the second time around was much easier, with the tumor being so much smaller this time and already having lost the balance, hearing etc., who really want to have brain surgery if they don't "have too". Psychologically I had to, the worry was killing me.
Kathleen

[okiesandy]

Hi,

I agree with Mark. The doctors on the Cyberknife msg. board will answer any question quickley. You can even email them privately. Later they will ask to see your MRI's Most will present them to a board with several kinds of doctors and they will make a group decision as to the best treatment for you. There will be at least one neuro-surgeon that dose surgery and radiation on the board. It costs nothing to ask.

Sandy