Must decide Radio or surgery

[luciacarmen]

Hello, 

I  agree  with  Tumbleweed  - 
I  am  a  new  member  to  the  Forum.  My  name  is  Carmen  and  I  have  the  same  dilemma  as  Tamar.
I  was  diagnosed  with  an  acoustic  neuroma  in  August,  2009.  The  initial  measurement  of  my  left  side  nuroma  was  originally  1  cm  and  my  hearing  test  had  great  results.  I  was  watched  and  had  serial  MRI's,  every  3  months,  and  the  last  MRI  showed  a  growth,  likely  1-3  mm  in  size  and  the  audiogram  showed  a  40%  decline  in  hearing  on  the  left  ear.  I  am  almost  56  years  old.
I  have  since  end  of  April  to  now  been  researching  on  best  options  available  and  I  have  not  been  more  confused  on  the  best  option  to  take.
I  was  seen  at  MD  Anderson  Cancer  Center  in  Houston  (I  am  from  Houston)  and  advised  Gamma  Knife.  I  sent  my  records  to  House  Ear  Clinic  &  advised  rectosigmoid  approach  microsurgery.  I  sent  my  records  to  UPMC  in  Pittsburgh  &  they  advised  Gamma  Knife.
My  research  tells  me  this:  gamma  knife  is  great  because  of  minimal  to  no  recovery  time  but  one  runs  the  risk  of  regrowth  and  the  concern  for  not  having  an optimal  surgical  field  if  you  need  surgery  down  the  line.  Also,  it  would  be  more  difficult  to  avoid  injury  to  the  facial  nerve  after  gamma  knife  surgery.  Moreover,  the  complications  from  gamma  knife  are  delayed  &  I am worried about facial paralysis. The dilemma is the best option & where is the best center for the best option chosen?

[rm516]

Tamar,
I have same condition like you. No bothersome symptoms (occasional tinnitus & clogging in ear) and that's it.
2 Radiologist think it is  Meningioma and one think's its AN.  2 nuero- surgeons
2 surgeons recommend retro-surgery over GK and one surgeon recommended W &W. ^There has been no growth for 1.5+ years & no change in hearing (nearly perfect).
My AN/Meningioma is 2.7 cm diameter (slightly higher then yours). May be, new discoveries in medicine field are close and there is hope of minimum damage during removal/shrinkage.
Good Luck !

[sgerrard]

Hi Carmen,

It is not so surprising that a surgery center would recommend surgery, while two radiation centers recommend radiation. That's the American Way.

Is there a chance that "you will have regrowth and then need surgery and then the field won't be so clear and then the risk of facial nerve damage will be higher and..." ? 

Yes there is, but the important question is how big a chance. At Pittsburgh, Kondziolka reports that 98% of their AN patients treated with GK need no further treatment. Even if post radiation surgery guaranteed facial paralysis (which it doesn't), you would still have only a 2% chance of getting it. That is better than surgery can offer. As far as I know, facial paralysis after GK alone is quite rare, especially in smaller tumors less than 2 cm.

Welcome to the forum.

Steve

[nanramone]

To all who are making a decision, and to Carmen in particular, who mentioned Pittsburgh - it was most helpful to me when people who had been there stressed that it is important to trust our own guts (thanks to Jan, who wrote before others) - I was initially petrified of the idea of radiation, but after research, and communication with doctors, became comfortable with the idea of GK. So by all means - ask questions - as many as you need to ask - and study this issue until you feel comfortable with your decision. I almost chose surgery - but in the end, chose radiation. So make sure you feel good about your choice.

To Carmen - if you do consider Pittsburgh, I will say I had the best experience possible - the nurses especially were tremendously professional, and the entire staff treated me like I was the only patient they had - and I found out it was a very busy day for them! This experience could not have been made easier for me. Though it has nothing to do with deciding whether radiation is a good choice for you, Dr. Lundsford was surprisingly personable and unassuming, considering his stature, regarding GK in this country. That really put me at ease.

Best of luck to you all~

Nancy

[leapyrtwins]

What Steve said (docs who do surgery, tend to recommend surgery; docs who do radiation, tend to recommend radiation) is absolutely true.  Sometimes it can be very helpful to consult with a doctor who does both procedures.  But that won't necessarily let you "off the hook".  My doc does both, but insisted the choice was mine (VERY wise man  )

Choosing your AN treatment is a very personal choice.  One size does not fit all.

You need to go with what is best for you - after you've consulted with one or more qualified, experienced doctors, and educated yourself about the possible side-effects of each type of treatment.

It can be an extremely tough choice, but you should do what feels right for you.  You don't want to second-guess yourself after treatment.

There are many reasons people make the choice they do.  Some are very basic - like just wanting the tumor removed from their head; some are more complicated - like not wanting to be hospitalized and spend time away from work and/or family.

Go with your "gut"; follow your heart.  In my experience, when you find the doctor(s) and medical facility that is right for you, you'll know it.

Jan