Author Topic: Conflicting opinions: surgery vs radiation  (Read 1466 times)

Doug C.

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Conflicting opinions: surgery vs radiation
« on: March 08, 2023, 05:05:11 pm »
Hi everyone.  I have a 1cm AN, upper frequency hearing loss and tinnitus in my left year.    Hearing has been getting worse with each audiology test (3 so far) I was diagnosed with tumor Oct. 2022. 

I’ve met with 3 highly recommended neurotologists and 1 neurosurgeon.  2 Neurotologists said I should consider middle fossa surgery since I’m already experiencing declining hearing loss.  Since the tumor is still small, it would give me best chance to preserve hearing.

1 Neurotologist said he sees pros and cons, and he’s on the fence.

Yesterday, the neurologist said to avoid surgery.  Said based on what he sees in MRI,  I will likely lose hearing no matter what and surgery isn’t worth the risk.  If it grows, he said consider radiation.  Otherwise just leave it alone.

What’s even more frustrating is that this neurologist is surgical partner with 1 of the neurotologists who recommended surgery.  The two doctors who would perform the surgery together can’t agree if I even need the surgery.

Just curious to know if you faced a similar situation and how did you manage it.  Thank you.

« Last Edit: March 08, 2023, 05:17:38 pm by Doug C. »
Left side 1cm AN, tinnitus, upper frequency hearing loss.  Diagnosed 10/20/22.  Currently weighing options.

MarlaB

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Re: Conflicting opinions: surgery vs radiation
« Reply #1 on: March 08, 2023, 06:04:53 pm »
I had seven or eight meetings with different surgeons at different facilities and was offered two different approaches. I ended up going with the team that I felt more connected to. A gut feeling. I don't think my outcome would have been any better or worse with another team, but in the long run, I am very happy with the choice I made.

skier

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Re: Conflicting opinions: surgery vs radiation
« Reply #2 on: March 09, 2023, 07:58:33 am »
Hi Doug,
Having a small acoustic neuroma and increasing single-sided hearing loss presents a bewildering set of choices. I have that set of circumstances, and I'll just make some comments.

On at least a weekly basis, I wonder if I'm doing the right thing, in watching and waiting, but no regrets so far.

My comments are not meant to guide your choice at all. I'm just identifying with what you're saying.

1. Having a growth on a cranial nerve that is causing symptoms is alarming. One gets medical opinions, and one expects some sort of consensus opinion to develop. Often, with smaller acoustic neuromas, people do not get consensus opinions.

2. I was advised by MD experts to wait for 6 months for a repeat MRI, to measure growth. I did do that, while collecting more opinions, re: surgery and radiation. It was NOT easy to wait, as I was losing hearing and scared. But I'm glad I waited.

3. Surgeons will most often be confident in the surgical options, and specifically in the types of surgery that they perform. Those MDs who treat with radiation are often advocates for that being the better option for smaller acoustic neuromas. There is no consensus, alas. Outcomes overall are considered similar.

4. And so, the patient is asked to choose, basically. When you choose your treatment, you sort of simultaneously choose your MD. (I would say it's important to choose your treatment, but for some people, they choose their MD and go with that person's advice. There's no right or wrong way, really.)

5. And, if you choose watch and wait, you can later change your mind based on MRIs, symptoms, your doctor's advice, or your situation or opinion.

5. There does seem to be some consensus that a small acoustic neuroma does not need an immediate treatment, all other things being equal.

6. The treatment choices each have a variety of risks. Do your homework on these rather considerable risks. Videos on the ANA site are excellent for this.

7. The ANA chatboard has a lot of patient stories. The only area of consensus I see is that people STRONGLY advise to go to a medical center and choose a medical team with a great reputation and great experience. Elsewhere here on the chatboard you can find those names. It is such a difficult surgery, for instance, that you want the best team you can find, and that means reputation and experience matter. A lot.

Sorry you are going through this.

Take care,
Skier

« Last Edit: March 09, 2023, 10:53:00 am by skier »

Greece Lover

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Re: Conflicting opinions: surgery vs radiation
« Reply #3 on: March 09, 2023, 10:04:49 am »
Hi, Doug.  It is definitely one of the weird things about these tumors that you have choices!  It's a good thing overall, because they're rarely an emergency.  But it does make the process fraught with indecision. 

As others have already said, some people on here have strong opinions.  All I can do is offer my experience and reasoning. 

I had 1.2 cm with tinnitus and very little hearing loss.  Doc said about 60-65% chance they could save my hearing with Mid fossa.  I opted for that because: 1. I wanted it out.  and 2. it gave me the best chance at the best long term outcome. But, I also knew that taking that chance also meant incurring some risk.  I'm very happy with the decision I made, but I also had a very positive outcome. 

I am curious why they think Mid fossa would not result in a good hearing outcome.  Is there something about the position of the tumor?  My understanding is that they don't often know that for sure just from the MRI. 

You might consider sending your MRI and info to the House clinic in LA.  they are the most experience, have great outcomes, and they do free consultations.  Not many places do mid fossa, so make sure any place you do that that they do it often.

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

Doug C.

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Re: Conflicting opinions: surgery vs radiation
« Reply #4 on: March 09, 2023, 05:15:27 pm »
Thank you all for your feedback. 

Skier, Glad to know I’m not alone in how I’m thinking about this.  If it wasn’t for the fact that my hearing is already in decline, I would probably be inclined to watch and wait. 

Greece Lover, 2 of the neurotologists are confident with middle fossa hearing preservation.  It was the neurologist who recommended against it. 

My gut still thinks middle fossa.  Probably best chance for hearing preservation, and because tumor is still small, best chance for permanent solution so I can move on.  Plus, I’m not willing to just let my hearing decline without a fight.  Regardless, not an easy choice, but could be worse, so I need remind myself to stay positive. 

Left side 1cm AN, tinnitus, upper frequency hearing loss.  Diagnosed 10/20/22.  Currently weighing options.

drumfest

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Re: Conflicting opinions: surgery vs radiation
« Reply #5 on: March 09, 2023, 07:44:34 pm »
Doug C.  I'm in exactly the same situation you are plus six months.  I've done the research with the expert centers and it's a tough decision when our hearing starts to decline. (scary indeed)  I've been back and forth on surgery and then radiosurgery and still haven't landed yet.  It's tough trying to find a surgeon that also does radiosurgery equally well and without bias or disclosures.

Good luck with the decisions and please keep posting.  Take Care!!  d
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

rupert

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Re: Conflicting opinions: surgery vs radiation
« Reply #6 on: March 13, 2023, 09:55:19 pm »
Doug,    I’ll throw in some opinion and some thoughts.    If you went to see another 10 surgeons you would probably get 10 more opinions and options. .   Surgeons tend to do what they know best and that’s what they prefer so that’s what they suggest.   Although you just don’t see a lot of Mid fossa being done it’s still an option.   I believe it’s basically limited to the inner ear canal though,  as that approach has some restrictions on access to the tumor.   At 1 CM you may be approaching size limit on that approach if it grows much. I’m Not a doctor , that’s just my understanding from  when I was looking at treatment options.    Saving hearing with an AN is really a toss up no matter what approach you decide.    Realistically and truthfully odds are not that great.   The watch and wait group have way more stamina than I could muster.    I’m of the opinion to get things taken care of before they get even more problematic but, that’s just me.   Find the best surgeon with lots and lots of experience with these things and not with just a few a year.    More experience usually  equals better outcomes is true to be.  I wouldn’t rule out gamma knife. Especially on that size tumor as the success rate is very high, hearing retention is possible and  regrowth rate is the same as  surgery.  Because it’s an in and out procedure of about half a day it also allows you to travel to the best surgeons in that field.   You want the most experienced.   Good luck to you.

mwatto

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Re: Conflicting opinions: surgery vs radiation
« Reply #7 on: March 14, 2023, 12:59:17 am »
I had CK radiotherapy 4 years ago. My hearing is at 85% that ear and further shrinking. Had 4th MRI and audiology this month. I do take certain things but hesitant to promote them Basically I work on inflammation and fibrin/ micro clotting and especially since Pfizer 15 months ago which left me with some issues on that side (not the AN side).
« Last Edit: March 14, 2023, 01:01:54 am by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

skier

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Re: Conflicting opinions: surgery vs radiation
« Reply #8 on: March 15, 2023, 07:54:50 am »
In case this is at all helpful, I agree with Rupert's assessment, which is consistent with everything I've read or seen (video) or heard in consults.

For what this is worth, I had dreaded losing my hearing in one ear, and although not measured by an audiogram lately, it seems to be almost gone/nearly deaf. And, the surprise to me is that it is easier now than when I was first diagnosed.

I had a really poor word recognition score by an expert audiogram, when my AN was being diagnosed, and my perception was that it was very confusing to listen to people talk. It was as if there was "garbage noise" coming in one ear.

Now, there is much much less input in the AN ear, but my perception is that I have no trouble hearing or listening to people with one good ear. (Not including parties, I suppose.)

So, it's definitely worth fighting for your hearing in you AN ear, but I do offer the remark that losing that hearing is less troublesome than the AN predicament/treatment choice puzzle.

Good luck on all counts. Look for expert MDs. Stay strong.

Doug C.

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Re: Conflicting opinions: surgery vs radiation
« Reply #9 on: March 17, 2023, 10:42:24 am »
More great feedback.  Thanks, everyone!  The 4 surgeons that I’ve consulted with are some of the most highly regarded on this forum (and elsewhere).  What threw me for the biggest loop was that the surgeon who recommended against surgery is surgical partners with one of the surgeons who suggested surgery.  I can understand 2 different doctors giving 2 different opinions, but this was the exact surgical team who would perform my surgery and they can’t agree with each other.  They just agreed to disagree.  I guess I should appreciate the honesty, but it just felt odd the way it played out.

Regardless, I still have 2 other very experienced surgeons that I trust, and they recommend surgery, which I am leaning towards.  I don’t have any unrealistic expectations regarding hearing preservation, but I am going to fight to keep it, not just sit around and watch it deteriorate.  If I lose it, I’ll be at peace with that as long as I know I fought for it.

But, that’s just me, and I respect and appreciate everyone handling this journey in their own way. 

Next MRI in about a month.  I suspect I’ll be making a final decision around that time.
Left side 1cm AN, tinnitus, upper frequency hearing loss.  Diagnosed 10/20/22.  Currently weighing options.

MarlaB

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Re: Conflicting opinions: surgery vs radiation
« Reply #10 on: March 17, 2023, 11:11:26 am »
I did what you did. After all the differing opinions, I went with the surgeons I had the most trust in.

Wishing you the very best, knowing you did your very best.

Marla

donjehle

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Re: Conflicting opinions: surgery vs radiation
« Reply #11 on: March 17, 2023, 07:07:06 pm »
Hi Doug,

Like skier, I have also been in the watch and wait protocol, and I agree with what skier said.  While waiting my word recognition score dropped from 100% to 12%, and I wanted my acoustic neuroma treated!  But I consulted with some of the top experts I most respected, and they all said I should continue to watch and wait as I haven't experienced any tumor growth and maybe even some shrinkage while waiting.  Maybe the aspirin is having an effect, after all.  I don't know.

So, as you said, Doug, everyone needs to handle it in their own way (as all of our journeys are unique).

I just want to thank you for sharing your experience and for participating in our community.  Keep us posted when you make your final decision and tell us how your procedure goes.

Best wishes on your journey!
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.