Feeling Rushed Into Surgery

[Het]

If you read all of this thanks for bearing with me.

What I'm looking at:
I'm a 38male, and I probably lost my ability to hear speech out of my left ear about 8 years ago. I had no insurance until the beginning of this year, so I never got the AN confirmed until now. I have no other symptoms that next to no hearing in my left ear. I got an mri and the AN is 42mm... the two sets of ENT/neurosurgeons have said it needs surgery, probably two sets of it. An initial retrosigmoid, to probably get out most of it, if not all. And then a possible second surgery after the swelling goes down to maybe get the last bit thats near the facial motor nerve. The surgery is scheduled about 4 weeks out. Clinical balance and facial nerve tests show they are affected minimally. Which makes me hopeful that surgery would result in minimal facial paralysis, but likely large balance issues.

What I don't know
I don't know what makes the neuroma grow. I know the fibrowhatever genetic disorder can make it more likely. But I don't understand the nature of the tumour. How is it different than the nerve itself? What is growing that is not supposed to be growing? How is that affecting the acoustic nerve negatively? Why can't the signals from my ear still reach my brain?

Can the neuroma shrink on its own? How often does that happen? Is there any evidence to show why that might happen? (Like a certain diet?) Can I cut sugar and increase antioxidants and superfoods and mushrooms, etc, etc and that might make it shrink? If it did shrink, could my hearing improve?

I don't know what exactly happens in the surgery. I imagine it being partly exploratory/the surgeon seeing kinda how the neuroma is touching things. I image the surgeon will try to carefully get most of the mass of the neuroma out and leave the more delicate work until the end or for the next surgery, especially if the surgery is taking a long time. I'm not exactly sure what makes it take more or less time.

Could there be better options if I waited? IE) Could there be development where the tumour is partly removed and I get a cochlear implant and my hearing gets better? Or something like that? Why isn't that an option for me now?

I don't know the probablity of recovery without complications./The probability of each complication and its severity. (which can't be known, and thats aggravating)

My surgeon has taken out 2500 acoustic neuromas. But I don't know how knowledgable my surgeon is about alterntives. I realize 42mm is "giant", but logically something besides surgery could make it smaller, but that is not knowledge my surgeon is going to be invested in. 2500 surgeries pays for alot of nice things. I'm not saying he's out to sham me. Just that I've lived amongst people in the medical field all my life, and I know money is what makes it go round. And there are good and bad doctors and just because you've done 2500 acoustic neuromas doesn't mean removing those 2500 acoustic neuromas was what was best for those 2500 patients.

What I'd like help with

Whether or not there is sensible alternative to the surgery.

Knowledge about acoustic neuromas. (what they are, how they grow, how they might shrink, why they affect your cochlear nerver and facial motor nerve? negative.

For a 42mm neuroma could there a better medical option than just retrosigmoid taking it out? Why isn't a cochlear implant an option?

[Greece Lover]

Hi Het, sorry you had to join the club.  I've done a LOT OF research, although I"m obviously not a doctor, but I"ll respond to a few of your queries/concerns based on my own experience:

There are times when two surgeries are necessary, depending on placement, etc.  But I've not heard before of where a doc was basically planning on it at the outset.  But with big tumors, esp. if they're near the brainstem, they often leave residual tumor in place.

what makes the neuroma grow? my understanding is that there are cells called "Schwan" cells whose normal job is to coat the nerves.  For some reason in us lucky ones, those schwan cells keep growing. They lack the signal to stop growing for some reason.  So the tumor is basically an accumulation of those cells.

I've heard stories about them shrinking, but it's definitely not the norm.  sometimes growth stops. Many people on the forum here have put forward ideas and or articles talking about various ways to try to shrink the tumor naturally, but I don't think any of them have shown clinical, scientific results.

In your case, a cochlear implant won't do any good because the tumor has already damaged the nerve that connects the cochlea to the brain.  Your cochlea is not the problem, it's the connection.

There is another surgical approach for large tumors, called "translab" and I don't know if you'd be a candidate for that or not.  My understanding is that if often can have better outcomes with the facial nerve. You could ask about that. I would also ask your surgeon for percentages of various outcomes: facial nerve trauma, etc. They should be able to supply that type of documentation.

I wish you peace.

[mwatto]

My friend an ENT here in Perth Australia and he told her that the big ones are often the easiest to remove. At that size the risk of swelling might be an issue. I know its very very stressful (mine in a bad location and surgery wasnt recommended) but at you age surgery might actually be a good thing. Certainly I wish I had just got rid of the bugger...!

[Het]

Thanks for the responses

...the tumor has already damaged the nerve...

Can anyone expand on how the tumour has damaged the nerve? Like, it sounds like the nerve should be fine, just a big tumour around it. (A big tumour around it is bad in terms of pressing up against brain stuff, but I kinda don't understand why surgeons don't leave the nerve in tact to preserve hearing. I realize thats not how it is, but don't understand why. It seems like if you could take pieces of the tumour out, the nerve would have a chance of healing and getting hearing back?

[Greece Lover]

Again, I'm not a doctor, so don't quote me! But here's my understanding:

These nerves are incredibly delicate and incredibly tiny.  The surgery itself has to be done under a microscope. In your IAC you have four nerves: two balance nerves a hearing nerve and the facial nerve.  In surgery, the balance nerves are removed completely so the tumor won't come back.  The facial nerve is able to take quite a bit of trauma and then heal itself. IT can be slow. I had facial paralysis for several weeks, but it slowly corrected. For some, it never returns to normal. Sometimes the facial nerve heals incorrectly (for instance, when I eat something spicy or acidic, it triggers my nose to run on the AN side).  For some reason, the hearing nerve is more sensitive.  Once you lose hearing, it doesn't heal back, or come back. I don't know why. They do leave the hearing nerve intact, but even the process of surgery can damage the nerve.  During surgery, they place receptors on the nerve so the surgeon can monitor the your hearing throughout the surgery, and they proceed very slowly.  But its very delicate.

I don't know if any of that makes any sense!

[Cheryl R]

NO there is no better option for your size tumor.  It is too big for radiation.       The very small cranial nerves involved get pushed and stretched as the tumor grows on them and to the side of them.      There also can be some swelling of the facial nerve after the tumor is removed.       If the balance nerve is not cut,it is not the same after tumor removed and you will continue to have balance issues.   Once cut the other side of the brain learns to compensate for it being gone.
   There is no ways to try to avoid this with foods or drugs or supplements or would have been used long ago.,               
                         The damage is being done before you ever have surgery so it is not the dr causing alot of the issues.         Many of the outcomes past surgery are temporary.    They are not complications but outcomes of what the tumor has done to the cranial nerves.       The loss of the hearing is not temporary.   That is a benign tumor is good ,   
                                                             Cheryl R         

           

[skier]

Hello Het,

I hope that you have been able to ask your surgeon some of your questions and develop confidence in your treatment plan.

And, if you're not feeling any more confident, then maybe you can reach out to another high volume center of Acoustic Neuroma care for a second opinion.

I think you would find a lot of consensus among physicians that your tumor size demands surgery in the near-term. Maybe learning there is medical consensus for your plan would help your morale. Sorry it is such a shocking diagnosis, which I think it truly is for everyone.

Hope you will let us know how you are doing.

best,
another A.N. patient

[greenamw]

 Surgery sounds intense, and I get your doubts. Maybe a second opinion could help? Also, cochlear implants – any reason that's not on the cards for you now?