Would liek to hear from someone with experience!

[NCDIH]

Hello, have retrosigmoid surgery scheduled in a few weeks but I am having serious second thoughts after reading posts on this site and others. AN is 2CM, I have ringing and hearing loss but no other symptoms. I have read about all these after effects of the surgery and I am wondering if I should look at radiation instead, the docs I am going to do not do it, they feel the failure rate any potential complications later on are unacceptable.

I am 58 and in excellent health (otherwise!) - I can do pretty much whatever I want to do. SO I guess my question,, is there anyone who has had this surgery with like sized tumor and done well? I don't mind losing the hearing, if that happens then so be it. Nor some facial nerve impacts - the neurosurgeon says that permanent impact is highly unlikely, he will sacrifice hearing and leave some of the tumor if he has to in order not to damage FN. I trust him, he does 35 to 40 of these a year and has been doing them for 16 years. Really what I am worried about is this cerebellum retraction and the potential damage from that - I am going to ask him specifically about that after do all this reading.

[CHD63]

Hi NCDIH .....

My original AN was 2+cm and I underwent retrosigmoid approach surgery for removal.  I had balance issues for quite a while and double vision for about two weeks, but no facial paralysis and no headaches.

Much depends upon your physical anatomy, exactly where the tumor is located, and the skill of the neurosurgeon.  This is one time when you want a surgeon with extensive, successful experience removing specifically ANs, not just any brain tumor.  Many of us traveled great distances to have top care.

Many thoughts and prayers.

Clarice

[DizzyMamaIL]

Hi NCDIH,
I am in no way an expert, but I feel like I was where you are about 2 months ago. Watching YouTube videos of people before and after surgery was the scariest thing ever. Only thing I would suggest when making your decision is to research the different options. A lot of the posts on here and elsewhere will tell you that it seems like surgeons almost always recommend surgery and radiation oncologists always recommend radiation. It's really difficult to know if you've made the "right" decision. Seems like experiences are so different between people that you can't possibly know until after, so at some point you just have to accept your decision and go with it.

[rupert]

I was in your shoes 6 years ago.  I was scheduled for retrosig for a 2.2 x 1.6 AN.  It was very hard for me to accept possible complications of surgery and it was causing some serious mental stress.  I ended up canceling my surgery one week out.  I went immediately to the GK option and it's worked out well for me.   No one can ever predict the outcome of any procedure but,  please remember that any treatment option cannot guaranty against failure or complications.  Many people here will tell you to go with your gut instincts.  If it doesn't feel right inside your head maybe it's not the best thing for you.  Good luck to you.

[michellef08]

If you are having serious second thoughts - then maybe you haven't found the right treatment plan / team of doctors for you? I had a surgery on the calendar at a world-renowned hospital in my area, but upon further research here on the discussion board, and talking to people in my local support group, I realized it wasn't the right choice for me. I called them and told them to cancel my surgery, and did not need to reschedule. This is your brain after all - and the best thing about an AN is that it is normally slow-growing. You definitely shouldn't rush into treatment that you aren't 100% comfortable with, as there are so many risks. I feel like the best position you can put yourself in is if you can say you have done as much research as you can handle, met with many experienced AN teams, and discussed all treatment options with those doctors. Once you make the decision that feels absolutely right for you - you can only look back, no matter the outcome, and say, "I did the best I could do". And maybe once you truly think about those things, then you will realize you are comfortable with the decision you have already made?

[Paulawht1]

Hi,  I just had surgery on February 11, 2016 to remove my tumor.  Like you I was very nervous every but trusted my surgeon.  My tumor was A 1.2 but when removed had grown to a 2.0.  I did lose my hearing in my ear but do not have any facial issues other then my taste buds are a little different.  I just went back to work after 6 weeks.  My balance is slightly off but getting better and I an adjusting to hearing out of one ear.  First 3 weeks recovering was the hardest but it gets easier every day.
I had a great team of doctors.  Good luck and keep the faith

[UpstateNY]

NCDIH,

As others have stated, most of us have second guessed our decision as well.  I had scheduled microsurgery, then cancelled it in favor of GK for some of the same reasons you are questioning it.  My gut favored microsurgery, but my engineering background forced me to sift through the data in favor of GK.  After further probing the various physicians about my specific situation (e.g. tumor location, size, etc.), I then had better data that showed a similar outcome (e.g. facial nerve preservation, balance issues, headaches, etc.) between both GK and microsurgery for tumors 2cm or smaller.  This was what I needed to change my mind back to microsurgery, since it matched my gut feeling and addressed the open concerns I had.

It is now just over 7 weeks post surgery (I had translab as opposed to retrosigmoid) and my recovery has been very fast and uneventful.  Although it was very stressful on the front end, I am glad to have chosen microsurgery so far.

My suggestion is to find what is needed to address your open concerns.  In reality, both microsurgery and radiosurgery have very good results, especially for smaller tumors like yours.  You will always see worse stories out there from microsurgery, since many patients treated by this method have very large tumors or in very dangerous locations that could not even be treated by radiosurgery.  I had to keep reminding myself of this as well.

I wish you the best with your decision and outcome.

[mcrue]

Really what I am worried about is this cerebellum retraction and the potential damage from that - I am going to ask him specifically about that after do all this reading.

How did your retrosigmoid surgery go? Any updates?

The "cerebellum retraction" was also a major concern of mine too. Having a broadcast journalism degree, I naturally investigated as much as I could regarding the 3 major types of microsurgery, radiation and proton beam treatments.  Consulting with many people on the ANA forum, especially PaulW and BLW, led me to select the Gamma Knife.

We went over the stats in detail, and radiation offered the best outcomes for smaller tumors like mine in regards to facial nerve and hearing preservation, and complications in general. Plus, many world-renowned neurosurgeons also pointed me in the direction of radiation treatment.

Furthermore, Dr. Schwartz from the House Clinic advised me that I was not a candidate for Retrosigmoid approach because of my obesity.  At the end of the day, my gut told me to avoid microsurgery at all cost and select the least invasive approach. I would think at age 58 you may be a good candidate for CK or Gk.

I hope all is well with whatever decision you make.