Author Topic: "Second Opinion" - confusion  (Read 1326 times)

catehiebert

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"Second Opinion" - confusion
« on: September 10, 2018, 09:19:51 am »
Hello all.  Recently diagnosed with 2cm mass and glad to find this group.  I am working with the surgical team at the University of Minnesota (from what I've heard, best in the state second only to Mayo Clinic) and I feel comfortable with both of them  My question....in reading the site, it recommends getting a second opinion. 

My problem, they would not give me their opinion during our first meeting.  Rather, given the size of the tumor, they gave me all the options, pros/cons of each and asked me to weigh which outcome I'd feel best with (i.e. hearing preservation, balance, facial nerve implications).  Directionally, I'm inclined to choose the surgical option Translabyrithine, due to the least likelihood of facial nerve damage.

We are meeting with them again tomorrow -- is it weird they didn't have a recommendation up front?  Since I have a preference, is it fair to push them for their "recommendation" now?  And, if I want another opinion, where would I get that, given I know all the options and know the mass exists?

Thanks in advance for your thoughts....Cate

rupert

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Re: "Second Opinion" - confusion
« Reply #1 on: September 10, 2018, 11:38:55 am »
Given that you know you have a AN and the doctors have run down your options, a second opinion would be done just to see if you have more confidence in another doctor.  It is very important to believe in your treatment team.  Better outcomes usually come with more experienced teams.  There are numerous highly recommended doctors that are mentioned on these forums.  Deciding to get an opinion from them would depend on how comfortable you are with the doc you have already seen,  willingness to travel and insurance issues.  Personally I would talk to at least 3 neurosurgeons with lots of experience dealing with AN's.  By that I mean doc's who do a good number of them per year, not just a few and that also is a good question to ask your doc tomorrow.  How much experience do they have with AN's.   I will add that facial nerve preservation is about as high on the list as you can get  for a surgery goal.  Every surgery has a goal, another good question to ask the doc.  What is the goal.  If you want to have the least chance of any kind of facial problems, either gamma knife or cyber knife options have just about miniscule chance of facial nerve damage.   Good luck to you. 

LakeErie

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Re: "Second Opinion" - confusion
« Reply #2 on: September 10, 2018, 11:47:56 am »
The better known treatment centers for AN usually offer free consults by phone if you send your imaging. House, UPMC, Keck at USC come to mind. Mayo has a well known and experienced AN surgeon named Link ( I think.)
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

ANSydney

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Re: "Second Opinion" - confusion
« Reply #3 on: September 10, 2018, 05:41:20 pm »
Cate,

With ANs there are  usually three options. I'm glad they left the decision up to you. Usually, each specialty will recommend what they specialize in.

Why not have a follow up MRI 6 months after the diagnostic MRI to see if the tumor is still growing. Most ANs have already stopped growing by the time they are diagnosed. https://www.anausa.org/smf/index.php?topic=23404.msg979773646#msg979773646

Statistically, your no worse off waiting and seeing. The article at https://www.ncbi.nlm.nih.gov/pubmed/18559028 concludes "An initial period of conservative management is a safe and reasonable management policy in all acoustic neuromas up to 2 cm in size at the cerebello-pontine angle. Given that there are no failsafe ways of deciding potential for growth in acoustic neuromas, initial conservative management of these tumours offers superior hearing and facial nerve preservation when compared with primary surgical treatment."

Also, take a look at Chapter 4: An intention to treat analysis of conservative versus surgical management of vestibular schwannomas in http://etheses.bham.ac.uk/3748/1/Martin12MD.pdf

catehiebert

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Re: "Second Opinion" - confusion
« Reply #4 on: September 17, 2018, 01:44:33 pm »
Thank you all for your input. 

I was able to call and get an appointment at Mayo in Rochester 9/21 to get their opinions given my surgical goal.  As expected, it's a small group of surgeons, so they all know each other.  Dr. Hines, who I'm working with at the U of M has done over 750 surgeries on AN's - both retro and trans...and Dr. Link at Mayo is highly recommended as well.

That said, even though this is scary, it's comforting to have Drs. that have this much experience :)

Cate

Cheryl R

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Re: "Second Opinion" - confusion
« Reply #5 on: September 28, 2018, 11:11:24 pm »
Univ of Iowa in Iowa City also does a large no of ANs if want any more  opinions.        I have went to Dr Bruce Gantz since 2001 when had my first AN.    Over time was found to be NF2 when 1 more showed up on other side and another one on same side as the first.                   They have many out of state patients.                           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

 


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