New diagnosis in SF/Bay Area

[sbtom]

Hi  there,

I've been trolling this group for the last two weeks.  Last Wednesday I met with four specialists at Stanford Hospital after a MRI ordered by ENT showed a tumor.  They diagnosed it as an AN.  It looks like all three options are open to me (watch and wait, retrosigmoid surgery, or CyberKnife radiosurgery).  I'm leaning towards radiation but need to make a choice between Drs. Steve Chang or Nikolas Blevins. 

1) Both seem very competent so I was hoping poll this group on their actual experience or results with either gentlemen.

2) A newbie question to be sure but with radiosurgery, would one expect the treatment plan like targeting/duration/dose, etc.  to be different depending on the amount of pretreatment hearing a person has?

Thank you,
Stephen
AN 1.3x1x1cm

[Bobette]

Hi Stephen,

I too live in the Bay Area.  I had CyberKnife with Dr. Chang in July.  I am doing quite well and will be having my first follow-up MRI on Feb. 5.  I can't say enough good things about Stanford. 

Make sure to attend the two support groups available to us -- one at Stanford and one at UCSF.  It is very helpful to talk to people with all differing courses of action.  As you know already, this site is very helpful.  Also check out myacoustic.org.  There is a 2 1/2 hour interview with Dr. Chang posted there.

I think treatment is based on the size of the tumor and how far it reaches into the IAC - not based on symptoms. 
Good luck to you.  Hope to meet you at one of the support groups.

Bobette

[PaulW]

I think the treatment plan would change.

When they do the treatment planning, they map out Organs At Risk, this is typically the cochlear and brainstem and they create a plan to avoid them. However avoiding the brainstem and cochlear will mean more radiation to other things..

If your cochlear and balance is already gone, then you will only have the Brainstem at risk, which will give them additional freedom to apply the radiation from more directions, minimising damage to other areas

Also 3 session Cyberknife may not be needed, a single session may be do if your hearing is already gone.
It is theorised that multiple sessions ( Fractionation) may help hearing preservation, but if it is already gone why have 3 sessions
 

[arizonajack]

2) A newbie question to be sure but with radiosurgery, would one expect the treatment plan like targeting/duration/dose, etc.  to be different depending on the amount of pretreatment hearing a person has?

Options differ depending on the amount of hearing loss (if any) that you have experienced.

How much hearing do you have left on your AN side?

[leapyrtwins]

Stanford is an excellent place to have radiation for an AN.

I've heard the name Chang on the Forum more often than I've heard the name Blevins - but that may or may not mean anything.

IMO, either doc is an excellent choice.

Good luck!

Jan