Author Topic: Just found out husband has an AN. We live in MO. Any advice on doctors/questions  (Read 2984 times)

ConcernedWifeWendy

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Found out today that my husband has an Acoustic Neuroma and the doctor suggested Dr. James Benecke Jr who is with Missouri Baptist Medical Center.  We have United Healthcare Choice Plus medical insurance.  Has anyone had microsurgery in the state of Missouri?  Anyone have United Healthcare.  What questions should I ask? Which is best - radiation or microsurgery?? Pros and cons of both?? 

CHD63

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Hi Wendy and welcome to this forum .....

Hearing a diagnosis of an acoustic neuroma is a scary time for both your husband and you.

I would recommend you and your husband explore the pre-treatment tab on the home page of the anausa.org web site.  Specifically:  https://www.anausa.org/pretreatment/treatment-options-summary

The one thing we all stress is finding a physician who has had vast experience treating specifically acoustic neuromas, not just any brain tumor.  Since ANs are still relatively rare, it is very important that the treating doctor has the experience.

Hopefully you will have some answers from other forum members related to your healthcare plan and experiences in Missouri for treatment.  I will say that many of us went out of state to receive the best possible care.

Best wishes.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Wendy, the choice of surgery versus radiation has to depend on what you want.     The tumor location,size if touching the brainstem all can be part of it.    Also ones personality and if they can deal with the tumor staying there or a person who wants it out.       I know there has been some from MO on here with treatment.    I am from Iowa and go to Univ of Iowa and Dr Bruce Gantz.      He does 70 plus a year and people do come from out of state there also.    What ever surgeon you choose need to do ANs on a routine basis and not just a few.   I have heard of someone having theirs done at KC.    Also at St Louis at Washington Univ.                    Making the choice of treatment is hard.      I felt fortunate that Iowa had neurotologist with experience as over time I was found to have tumors on both sides so have NF2 with 3 tumors over time.                Feel free to ask what you need on here as we know how support is a big help.                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

robertwh2

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Wendy,


My surgery was done when we lived in another state,  but we live just outside of Columbia now.  If you are close we could meet up. My wife would probably be a good support for you, and I could answer questions as the one who had the AN.

Blessings,

Robert
Diagnosed Feb 2010 with 2.3cm x 3.2cm left side AN
Trans Lab May 26, 2010 tumor had grown to 4.5cm, University of Michigan
Subsequent MRIs are clear
Left single sided deafness

raji83

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Wendy,
I got diagnosed in june 2014. My AN size is 1.2 cm . I am 30 year old so radiation is not my friend. So we are going with micro surgery. Radiation is usually good if you are arnd 50 or 60.
I visited best doc in east coast. If you need any suggestion or have any questions you can please message me. If you let me know the age of your husband and size of AN it will be lil helpful in suggesting approach and docs.. I am no one to suggest which approach but from last 2 months we have gained enuff knowledge about it after meeting good neurosurgeons and which can be beneficial for others. Rem one thing mostly docs will choose the approach they feel comfortable with.

Please let me know if i can be of any help. Feel free to message me. i can share my cell number incase you need to speak with me .

ConcernedWifeWendy

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My husbands AN is 1.7cm and he only has 4% word recognition in his right ear.  Dr. Rick Friedman, Dr. Eric Wilkinson, Dr. Alexander Bien (neurotologists) and his ENT all recommended translab. He has another appointment on Monday with Dr. Peter Smith.  Also, hoping he can get referred to Dr. Chicoine at Barnes. We can't afford travel/lodging/food etc for California (USC/Friedman or House/Wilkinson) and Dr. Bien has only done "3 or 4" in the past year. Any other doctors that someone knows that has vast experience would be helpful.

robertwh2

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I don't know about Bien and his surgery results but he is a good doctor.  He is very knowledgeable and insightful and has been helpful on trying to diagnose my other balance issues.
Diagnosed Feb 2010 with 2.3cm x 3.2cm left side AN
Trans Lab May 26, 2010 tumor had grown to 4.5cm, University of Michigan
Subsequent MRIs are clear
Left single sided deafness

 


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