Questions for Initial Consultation

[Marie in CA]

Hi all,

I'm newly diagnosed and am exploring options.  42 yo with a left side AN.  I had an abrupt change in hearing last December which led to catching my AN early.  The hearing problems are progressing and I'm not in the wait and see camp.  At 7mm I am told I am a good candidate for radiation, so that is the way I am leaning. I have an upcoming initial consultation with Dr. Gibbs at Stanford and I was wondering if anyone has suggestions of questions to ask during the consultation.  Basically, questions you did ask, or questions in hindsight you wish you had asked.

I basically floundering a bit in the new influx of data and would appreciate any nudges at all.

Marie

[gordy]

hey  marie i just had gamma knife on thursday. i didnt seem to ask to many questions, i thought i reead enough on it. might want to ask if you will retain the hearing you have left or the chances. the experience that they have had.im 43 and left side as well 1.5 by 1.5. good luck to you.

[Betsy]

Hi Marie,

I've had quite a few consultations lately, but my list of questions is constantly changing.  One question I've learned to ask each doctor is "how do you define successful treatment?".  One doctor simply answered "removal of the tumor"!  That told me he had no concern for my hearing (which is still good), so I didn't see him again.  Gordy's right, you definitely want to know how experienced they are.  Another question I always ask is how would he or she expect my symptoms to change after treatment.  Oh, and if the doctor says something you don't understand, be sure to ask them what they mean.  If possible, have them draw you a picture.  If you ask, they'll also send you a copy of their evaluation.

It's a lot of information to absorb all at once, but after awhile it starts coming together.  Reading through the old posts on this forum is a huge help.  Best wishes to you with your appointment with Dr. Gibbs.

Betsy

[Mark]

I think Betsy's suggested question is an excellent one and I also believe more folks should include it in their consults. Doctors definition's of success do certainly vary and it is important for a patient to understand that. Some of this is a reflection of their personal experience or what they were trained to define as "acceptable" results.

It would also be my personal view that many doctors try to manage patient expectations and this is probably more true with surgeons. Part of this may be laying the ground work to handle patient disappointment with less than hoped for results for legal protection or it may reflect their desire to assure the best care was given.

An answer "removal of the tumor is the goal" would be personally unacceptable to me as the quality of life after treatment is infinitely more important to all of us, than whether a doc can go to lunch with his colleagues and cellebrate that he got it all!   

Since Stanford is the facility in question in this situation, I can share that when I asked this exact question of Dr. Schuer who was the head of the department at the time, his answer was something along the lines of "we consider the level of success measured by the patient's satisfaction with the treatment outcome. Sentiments that were echoed by both Dr. Gibbs and Chang in my separate consults with them.

Mark

[linnilue]

Betsy and Mark...

I know what you both mean concerning figuring out how a surgeon measures successful treatment. For some, just removing the tumor or most of the tumor without losing the patient seems to be enough, never mind that the patient has post-treatment facial paralysis, dry eye, in need of an eye weight or spring, loss of hearing, speech problems, or nerve damage. The problem with the word "success" is that it is a term that is relative to one's own expectations. If your expectations align with your doctor's, then you and your doctor with be on the same page when it comes to determining what a successful outcome would be. However, quite often a patient's and a doctor's definition of success is quite different. Marie...good luck getting that question pinned down..   

Bruce

I have to say, Bruce is absolutely right about the interpretation of the word "success."  It's an arbitrary answer to a patient's realistic expectation.  The questions that needs to be answered the most are what are the side effects and or complications that this particular docotor sees the most post-op whether it is radiosurgery or removal of the tumor by surgical technique.  Be very clear about these answers, they will help you to decide on the physician that you feel most comfortable with and the type of surgical technique you choose.   

[tony]

I think I go will all that has been said so far - only to add
a) take a friend or relative along OR
b) make good notes - write it all down
In the emotional/stress state that goes with news like this
its not always easy to distinguish what you actually hear,
from what you might WANT to hear
- theres quite a big difference
Good luck with your meetings
- I am sure the group will help you understand the answers
Tony

[GM]

Here is a list of questions to take with you that I got on a AN site some time ago...hope this helps

Gary

-----------------------------------------------------------------------------------------------------------------------------------

A.N. questions for doctors
 
Doctor's name:
Address:
Phone:
Email:
Date of visit:


Print this page out before you visit the doctor and write down the answers in the right hand column. Doctors have busy schedules. Try not to overload them with questions. Cross out any questions which don't apply. If there is not enough time during the visit, perhaps you could leave a copy with the doctor to answer later.
 

Basic options

I understand there are basically 3 options open to acoustic neuroma patients:

wait & watch
surgery
radiosurgery
In my case, which do you recommend, and why?

Given the size, location of the tumor and my medical history, would you rule out any option, and why?

In case of recurrence, which procedure would you recommend the second time around, and why?
   
Wait & watch

At what frequency should I have MRI tests?

At what point should I stop waiting and seek treatment?

What would you recommend at that point, and why?

surgery
radiosurgery

   
Surgery: general

I am told there are 3 surgical approaches:

translab
retrosigmoid
middle-fossa
In my case, which do you recommend, and why?
   
Surgical experience

How many ANs have you personally treated:

total
total using the recommended approach
in the past year, how many per month, using the recommended approach
How many people will there be in the operating team, and who will do what?

Do you use facial nerve monitoring throughout?

What, if anything, do you use to fill the void left by the surgery?
   
Surgery: duration

how long do you expect the operation to take?
how many days will I spend in the hospital?
how many weeks will I need before I resume normal activities?
   
Radiosurgery: general

I understand there are many options:

single-session
Gamma Knife (GK)
Linac
fractionated (FSR)
Linac
Gamma Knife
Proton
Others?
In my case, which is best, and why?
   
FSR: number of fractions

Apparently, some institutions recommend a small number of fractions, 3, 4, or 5 or maybe 10. Others use many more fractions: 28, 30 or more.

Which should I choose, and why?
   
Radiosurgery: experience

How many ANs have you treated using the recommended radiosurgery technique?
   
Radiosurgery: protocol

What dosage do you use, and why? How long have you been using this particular protocol? When did you last change your protocol?

What simulation and planning technique do you use? Which software and which version? When did you last update your software?

What positioning system do you use, and why?:

frame bolted to the skull
dental mold frame
thermoplastic mask
Cyberknife
other

   
Outcomes

What outcomes can I expect in the following areas. Please indicate your own outcome statistics using the treatment you plan to use in my case, and also the estimated chances of each outcome in my particular case. Indicate if temporary or permanent.

Regrowth after surgery or continued growth after radiosurgery.
Hearing preservation. Percent gain or loss from pre-op condition.
Tinnitus.
Facial paralysis, taste problems, swallowing problems.
Eye problems: dry eye, double vision, other.
Facial pain, numbness.
Balance problems.
Headaches.
Cognitive problems, depression, fatigue.
CSF leaks.
Hydrocephalus.
Meningitis.
Seizures, strokes.
Death: on the operating table or post-op.
Given no complications, at what frequency will I need to have follow-up MRIs?
   
Publications

Have you published your AN results, and can I obtain copies?

in peer-reviewed journals
other
   
References

May I contact any of your former patients, particularly those for whom you have used the same treatment you are planning to use with me? The longer their follow-up period the better, (at least a year for surgery patients and three years for radiosurgery patients).
   
Cost & insurance

What is the total cost of the procedure?

Will my health insurance cover the cost?
   
Other

Do you see any sign of a cystic component to my tumor, and if so, does this affect the choice of treatment?

Is there anything else I should know?

[yardtick]

Gary,
WOW!!!!  I wish I had the list of questions last Tuesday.  I asked a few and the neurosurgeon wasn't impressed with me at all.  I told him I was researching on the internet and he told me too much knowledge isn't good.  He also got me confused with "another patient" to quote him "my internet is down I can't access your file"  So I guess its okay for him to use the internet and not me.  I did ask him how many facial nerve grafts he has done.  He told me a few and would not elaborate.  I've been referred to another Dr in Toronto.
Thanks for the list of questions,
Anne Marie

[ppearl214]

HI Gary,

If memory serves me right, that list is posted here by Kate Besserman as well... I know it well as it was the same list of questions I used when initially beginning my treatment options... thanks for sharing.

Phyl

[tsl]

Hi Marie,
I've been collecting questions to ask too.  The folks on this website are WONDERFUL.

You also might want to visit:  http://www.andb.info 
I got this address from a post on this site.  The excellent questions from Gary can also be found there. 

In a post from ceeceek were questions:  What will be the initial effects...what will be the effects 6 mos. down the road...what are the worst possible effects...and how would they deal with them...what are the chances of damage to surrounding tissue...what are the chances that it will not be a effective treatment.

You also might want to ask about the role, if any,  of steroids in your treatment.

If it weren't for the helpfulness from the folks on this site, I wouldn't have  a fraction of the knowledge I now have.  Truly they been more helpful educating me than anyone else.

Take care,
Theresa