Author Topic: Large Tumor Surgery Approach Question  (Read 785 times)

MClewell

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Large Tumor Surgery Approach Question
« on: September 28, 2026, 08:00:50 PM »
Hey Everyone,

I was curious if anyone has ever had a situation like myself. I have visited 3 doctors and really enjoyed out of all of them a team at Duke Hospital (Cunningham and Zomorodi). However, they have been the only group to lean towards the translabyrinthine approach.

I go back and forth as my hearing test showed a 92% word recognition with some hearing loss on high pitches) but the Duke team did a Retro ABR that had poor results. This last result plus tumor size is why they are leaning torwards translab (30mm length,22mm width and 29mm height — 2.9 getting close to 3).

Anyone else had similar hearing results with such a large tumor? I’ll be honest — from everything I’ve been told and seen since the beginning of this journey, it does seem hearing preservation is low for the sizing I have.

donjehle

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Re: Large Tumor Surgery Approach Question
« Reply #1 on: September 29, 2026, 11:59:54 AM »
Hi MClewell, and thank you for posting your question on the ANA forums.

I have not had a situation like what you describe for yourself, so I'm not really qualified to give you an answer.  I not only have a small tumor, but I have 12% word recognition, so almost the opposite situation.

However, what concerns me the most is that I don't detect that you are satisfied with what the team at Duke has told you.  You mentioned visiting three doctors.  Were they all at Duke?  Or did you receive recommendations from other places?  If you have consulted with a number of specialists of different kinds (brain surgeons, radiation specialists ,etc.), and if they are all telling you that you should have the translab approach, then that's probably what you ought to do.

However, if you have not had consults with different specialists in different places, then you might consider doing that.  A specialist at Duke might recommend that approach just because that is what he/she is most skilled at.  But a specialist at House in California might recommend a different surgery approach which saves more of your hearing.  Maybe a doctor who specializes in radiation treatment at, say, Mayo in Minnesota might recommend a different type of treatment (and less invasive) than what Duke is saying.

You only have one chance to receive the treatment you need, so you should check out as many options as you can.  And if the various ones agree that translab is the approach you need, then you can enter that surgery at Duke with confidence that it is the right thing to do for your situation.  But, if it were me, I would arrange for different consults (which are often free and can sometimes be done over Zoom, by the way).  And maybe you have done that.  Personally, I would feel more confident if I went under the knife knowing that the translab approach was what others (outside of Duke) also recommended.

Best of wishes for your treatment!
Don

Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DanFouratt

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Re: Large Tumor Surgery Approach Question
« Reply #2 on: September 29, 2026, 02:37:02 PM »
If you are at Duke you might want to reach out for a different opinion from Dr. Kevin Brown at UNC.  He is my ent.  When I was getting second, third and fourth opinions I contacted people around the country. This is easier then you think. Everyone asked who is my ENT, When I said Kevin Brown they all said I was in great hands. The last Surgeon I spoke with was from Cedars in CA.  As the conversation wrapped she asked me to say hi for her to Dr. Brown.

Good Luck on your journey.

Dan
Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm
MRI 3/17/26            6 mm x 10 mm

MClewell

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Re: Large Tumor Surgery Approach Question
« Reply #3 on: October 09, 2026, 09:21:59 AM »
You know I did put in a referral to speak to Kevin Brown! I do like Duke and they are the first group to be a higher volume. But I do agree getting another high volume group comment would put my minds questions at ease.

I went ahead and put in phone consults with House and UNSD as well. Thank you both.