Author Topic: Recently diognosed  (Read 2325 times)

Pam A

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Recently diognosed
« on: November 17, 2005, 02:56:06 pm »
I'm new to this. I was recently diognosed with AN. It seem very small compared to some postings I've read - 8.5mm x 9mm. I'm am seeing a local Neurosugion next Tuesday. Any thoughts on questions I should ask would be great.
Pam A
AN in right ear since 2004.  Annual (5/8/08) MRI increase to 12.9 x 12.7 mm .  Post Gamma Knife at Tufts New England Medical Center (June 2008)

Raydean

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Re: Recently diognosed
« Reply #1 on: November 17, 2005, 04:27:44 pm »
A wonderlady, kate Besserman of the  www.anworld.com website put together the following list of questions that you might find useful.  On the website it has a printable version that you can print and take with you.

Best to you
Raydean


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?
   

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

Do not go where the path may lead, go instead where there is no path and leave a trail.

GM

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Re: Recently diognosed
« Reply #2 on: November 17, 2005, 06:52:21 pm »
Wow...those are great questions!  I copied them and are going to share them with others.  Pam, knowing size, and location of the tumor is what will help you to decide on your treatment path.  We've all been there and will help you the best we can.

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Pam A

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Re: Recently diognosed
« Reply #3 on: November 19, 2005, 02:47:22 pm »
Thanks for that web site Raydean. I have it for my visit with the Neurosurgion.
Thaks for you support GM
Pam A
AN in right ear since 2004.  Annual (5/8/08) MRI increase to 12.9 x 12.7 mm .  Post Gamma Knife at Tufts New England Medical Center (June 2008)