What important questions should I ask the doctors?

[Kate B]

It is easy to have the consultation visit conclude only to walk out of the office and think of an important question.  My suggestion is to have a list of questions prepared to ask the doctor(s) ahead of time and a notebook that indicates the date and the doctor.

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:

 
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?
   

--------------------------------------------------------------------------------
No medical decision should be based solely on information provided here. See disclaimer
List prepared on the initiative of Kate, with questions from many sources including the AN Archive site.

Revised: July, 2003

Kindest Regards,
Kate

[Becky]

This may have been implied, but don't forget to jot down the answers you are given. 

Becky

[Raydean]

Kate

I'm not sure how important this question is, but it helped us in our decision making process.  After meeting with all of the specialty doctors, each claiming "his/her way to be the best route to take"
we would look directly at the doctor and ask the following.

" If all things were equal (size, location and health of patient) and it was your loved one sitting here,  (father, wife, son, daughter, sister, brother) would you still recommend this procedure or doctor?'

This question helps the doctor to see the person as well as the condition.  We received some pretty amazing answers and even some turn arounds.

Best to All
Raydean

[evelyne vandersand]

Hi,
  When I was doing my reseach, I found out the following : when I was asking one question from the doctor and his answer was upseting me, I would become confuse and I had a tendency to block the rest of the conversation.
  So, I had a list of questions written down and I would tape every conversation, after having asked to do so.
   I had some key issues about balance problems and I would also ask similar questions a few times in a different way to check the different answers. I found that to be very revealing, even over the phone... also speak to the Doctor, always, not the nurse.
   Good luck and all the best. Take your time.
      Evelyne

[thecakes]

    I had a stroke.  The Dr. never went over with me the possibility of having a stroke on the operating table.  I probably would have had GK or something else.  Talk to your DR. about that.

[ppearl214]

Kate, this was REAL informative for me! I brought many of the questions with me (and yes, even wrote down the answers! ) at my first AN follow up to diagnosis appt... and still use these questions now in meeting with the new team  come this Monday.  Fabulous and thank you for posting!

Phyllis

[thecakes]

  Oh, and make sure you ask the Dr. just how many AN surgerys he's done.  Lots of experience is needed.  This is your life.

[Kate B]

I am glad that many of you have found the list of questions helpful.
Regarding Doctors....
If possible, please get at least two opinions regarding your treatment.  You will learn something from each visit and it will be valuable time and money spent.  It is so important that you go into the visit armed with the information that you want to know so that you get the same information and not just the doctor's information that he wants to share.

I remember a doctor visit, where the doctor's presentation seemed "canned". Albeit, it was important information, but it didn't get at all of the information that interested me. 

It is easy to have the consultation visit conclude only to walk out of the office and think of an important question.  My suggestion is to have a list of questions prepared to ask the doctor(s) ahead of time and a notebook that indicates the date and the doctor.

What are some questions that you have found important to ask the doctor?

Please add to this list for newly diagnosed patients.  What else would be helpful when visiting doctors?

Kindest Regards,
Kate

[Kate B]

Kate, this was REAL informative for me! I brought many of the questions with me (and yes, even wrote down the answers! ) at my first AN follow up to diagnosis appt... and still use these questions now in meeting with the new team  come this Monday.  Fabulous and thank you for posting!

Phyllis

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:

 
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?
   

--------------------------------------------------------------------------------
No medical decision should be based solely on information provided here. See disclaimer
List prepared on the initiative of Kate, with questions from many sources including the AN Archive site.

Revised: July, 2003