Mayfield Brain and Spine Center in Cincinnati, Ohio

[kristie2332]

I have been recently diagnosed with Acoustic Neuroma.  I made an appointment with Mayfield Brain and Spine center in Cincinnati, Ohio.  Has anyone on here had anything done there?  I have done some research and it appears they have an experienced team and do around 160 surgeries/radiation a year.  I am meeting with 2 different surgeons, one that does the radiation and one that actually does cranial surgery.  As of now, I feel like I should have the tumor completely removed.  Just not much on leaving a tumor inside me anywhere.  I know there is a chance it will shrink, but I know if it is removed, then it is gone for the time being.  Just wondering if anyone has any advice for me.   My tumor is relatively small, 1.5 x 1.1 CM, so either option could be performed.  I do have 40% hearing in my right ear and 40% speech interpretation already.  Just reaching out to anyone that could give me some informed advice.

[jaylogs]

Hi Kristie and welcome to our little club!   Sorry you had to get an AN to join, but you'll find there's no better place to be!  I'm sure if there's a member on here that has been to that facility that they will pip in, but in case you haven't already done so may I suggest that using the search tools on here to look through all the categories for that particular place.  If you have any other question or just need to vent that's what we are all here to help with.  Good luck and let us know how it goes!
Jay

[Greece Lover]

I had middle Fossa surgery two months ago with great results. I had it done in Iowa city at the university of Iowa. Volume is one big predictor of outcomes. Ask them what their hearing preservation rates are.  At U of I they are 60-79 percent. Also Asia bout complication rates, particularly CSF leak. One thing I did too was ask about success and complication rates in relation to other places. It's kind of awkward, but good to see how they respond. Ask the if they are as successful as the house clinic, for example.

I had the same feeling as you. The thought of leaving the tumor in my head with radiation or WW seemed disagreeable.i assumed some risk in having surgery but I'm glad I did.  Others on this forum have felt differently and made different decisions for them.

It's not a fun process, but you'll get through. I'm feeling great. Still a few balance issues to work out, buts it's progressing. I wish you well.

[Sheba]

Hi

I think you need them to separate their radiation volumes from surgery volumes,
it's not useful to get a combined #, they are entirely different procedures / the skills required are unrelated.

And then, if you want surgery, get multiple opinions on which surgical approach makes sense (translab, middle fossa, retrosig) and ask doctors how often they do the approach that makes sense for you, and can they provide statistics for facial issues, hearing preservation etc for each.
 
Some docs mostly do Translab, others do a lot of Middle fossa etc.  so it matters which approach you need/want, and then make sure the doctor team has the most possible experience with that approach. 

With 40% hearing, not sure if they will recommend one of the approaches that seeks to preserve hearing.  Translab apparently has fewer risks but never preserves hearing.  Larger tumors or more in CPA tend to require retrosig.

If you choose radiation, it sounds like you may be close to Pittsburgh, which is where Dr Lunsford is (UPMC), one of the very best for radio options.

At 1.5cm you have some time to sort it out, don't rush.  but also you may request a repeat MRI sooner than 6 months.  Some docs will suggest more like 3 or 4 month following the first diagnosis.   If you have symptoms that were sort of abrupt, this may show more of a growth mode happening.  But there is no sure bet on that.

Good luck - you are in the right place to become educated.  You can join ANA and then get access to a library of really helpful webinars which are in members only section.

[Jet747]

Hello K,

I'm not sure I actually have any advice to offer other than "go with what feels right".

I had treatment a bit over a year ago and opted for RS surgery followed by GK radiation 6 months later.  Things I considered in my decision were reducing risk specific to loss of hearing and reducing risk associated with other items.  It's a trade though because I do have some risk that radiation might not kill the remaining AN and it and it could come back; resulting in another operation.  In my case I'm ok with that trade off though (IMO, surgery isn't so bad, not the greatest but certainly not the worst thing either).

Sounds like you have a certain comfort level with 100% removal which is great.  You can focus on the pros/cons of each surgical approach and decide what's best.

Good luck in your quest, you will do great!  Feel free to PM with other questions/concerns.

Best regards,
Jet747