Author Topic: Joining the Ranks of Watch and Wait  (Read 3865 times)

iluuvpups

  • Full Member
  • ***
  • Posts: 134
Joining the Ranks of Watch and Wait
« on: September 01, 2010, 11:22:09 am »
Hi everyone.  I was originally diagnosed with an AN back in February of this year.  When I had my translab surgery in May, they found I actually had a facial neuroma.  The surgeon debulked it, but left 5mm on the facial nerve so as not to cause facial paralysis.  I found this quite upsetting because I had hoped they would 'get it all' when I had my surgery.  My surgeon stated that he wants to do gamma knife radiation on the remaining tumor six months to a year after my surgery.  I started doing research and have yet to find another facial neuroma patient that has had radiation.  So I decided to get another opinion.  After consulting with Dr. Friedman of HEI, I've decided not to do anything for right now.  I'm just going to get MRIs (frequency to be determined) and watch it to see if it grows.  I can only hope that it doesn't.  And if it does, I'll have more decisions to make at that time.

So now that I've made this latest decision, I have to learn to live with this thing in me.  I've been reading the posts on tips for those in the watch and wait brigade and have found those helpful.  I think the hardest thing for me is dealing with this emotionally.  I have a lot of anxiety and play the 'what if' game all too often.  I'd love to hear from those of you in the watch and wait category as to how you get on with your lives knowing you have this thing in you. 

Thanks for listening and any advice!  --Carol Ann
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Joining the Ranks of Watch and Wait
« Reply #1 on: September 01, 2010, 11:26:25 am »
Carol Ann -

I wasn't one who chose watch & wait - don't have the type of personality that could have handled that  ::) - but wanted to say congrats on your decision.

There are many long-term W&Wers on the Forum and it's worked well for them.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

iluuvpups

  • Full Member
  • ***
  • Posts: 134
Re: Joining the Ranks of Watch and Wait
« Reply #2 on: September 01, 2010, 11:31:48 am »
Hey Jan.  I really don't have the personality for watch and wait either, which is why I originally chose surgery.  But I also don't see that I have any choice in the matter.  From what I understand, surgery is not recommended at this time since I have good facial function and the tumor is small and I've already had debulking surgery.  The only surgery they could do is to cut the facial nerve and then do a nerve graft.  This would surely cause at least some facial paralysis.  And radiation could perhaps cause permanent facial paralysis and other problems, and Dr. Friedman said that it's not been necessarily proven to help this. 
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Joining the Ranks of Watch and Wait
« Reply #3 on: September 01, 2010, 12:56:08 pm »
Hi, Carol Ann ~

I think you've made a logical decision by choosing to observe the remaining AN instead of going for more surgery or radiation, both of which have the possibility of generating problems with facial mobility.  That Dr. Friedman advised 'watch-and-wait' is the clincher.  Of course, I hope you won't see any growth in the remaining tumor and I do hope you can get control of your fears and stop playing 'what if'.  Frankly, I've learned that because tomorrow isn't guaranteed to anyone and we have very little control over such things as tumor re-growth, anyway, it simply isn't worth the time and stress it takes to keep worrying about something that may never happen.  Having a few sketched-out contingency plans 'just in case' is fine but fretting about 'what if' this and 'what if' that is futile, so I hope you can overcome the temptation to do that.   In any case, we support your decision to 'watch-and-wait' regarding future treatment for your tiny, remaining AN.  Now, try to enjoy the end of summer and the beginning of what I trust will be a beautiful autumn.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

yardtick

  • Hero Member
  • *****
  • Posts: 1321
  • I have to keep smiling, or else I WILL cry.
Re: Joining the Ranks of Watch and Wait
« Reply #4 on: September 01, 2010, 02:00:42 pm »
Carol Ann,

I have been watch and wait since I had my facial neuroma debulked Sept 2006 and I play the "what if" game all the time, must be my personality.  ::)  I know it can always be worse, my dearest friend in the world is terminal with lung cancer.  I only surround myself with people who I care about and who care about me, I've left the energy draining vampires by the roadside. 

As Phyl has said over and over "inch by inch and day by day" real words to live by.  You will do just fine and remember we are all here for you.

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Joining the Ranks of Watch and Wait
« Reply #5 on: September 01, 2010, 02:45:01 pm »
Carol Ann,
Well after being through one surgery I can totally understand why W&W is a good option.  Hopefully you won't see any growth and you can continue to W&W like some of the forumites here who been there for 9 or 10 years!
Good for you, it just proves...always get a second opinion!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt