Surgery for 3.2cm AN

[Echo]

Hi mmilazzo,

Clarice has really given you some excellent advice! 

Second opinions often help one decide on which surgeon has the best skills, the one we feel the most comfortable with, and for learning about the different options available to us.  While Retrosigmoid does offer some hope of salvaging your hearing, it also runs a higher risk of post op headaches and comes with a greater risk for facial nerve paralysis than the Translabyrinthine approach.  Knowing what risks you face based on the size of your AN, and the options presented to you is important, and your surgeon should be making all risks very clear. 

It is wise for newly diagnosed patients to take time to learn as much as they can about these tumors and not jump or be pushed quickly into treatment choices.  Finding a surgeon you are comforable with and one with extensive experience operating on AN's is most important.  The decision is truly a difficult and personal one to make. 

Cathie

[alabamajane]

Hi mmilazzo and welcome,,
We are here for you and welcome your questions during this very difficult time in your life. You have been thrown "a curve ball" and must decide how to hit at it.

Thanks too to Phyl for the usual wise and reassuring post to let us all know we are being monitored and will be corrected when needed!! I was trusting you would intervene!!

As several have said, the second opinion that we are recommending is to sort of justify or verify to you that you are making the best decision for YOU,, because as has been said, this is your decision that you will have to make and then be comfortable with results after treatment.

Usually we recommend sending MRI and info to one of the Drs who do MOSTLY this type of surgery and are VERY familiar with these tumors so you can hear their take on your situation and you can gather even more perspective on your situation.  I know you say you won't travel, and that's fine. I sent my info to House clinic also not intending to travel out there, but to make sure the Dr there "agreed" with what I was told locally. I had a Dr locally who told me "sure, I've done more of them than I can count" (wasn't sure if he meant on two hands or what  ) ,,, but I realized very quickly that I did not want to use him because of his arrogance! I knew there was no way he had done THAT many in this area since they are so rare..... Anyway,,,,,,,,,,
Are you close enough to Gainesville, Shands Hospital I think it is,, to consider them?? They have very experienced Drs there I understand also. May be able to talk to them also if you like.

Take your time and research a little on here and see what you find.  If you are comfortable with Dr Fields,, that's great,, that's what you need us confidence that you have talked to enough people to know its right. Nobody is judging you on here! Please stick around and ask more questions,, if someone doesn't want to answer,, they are certainly welcome to pass on to the next subject,,,, but there are those of us who will answer if we can.
Sorry this is so long,,,,,but best of luck to you and please let us know how your journey is going and how we can help!! 
Jane

[mmilazzo]

Yeah, Gainesville is too far away. I cannot imagine driving two hours home after brain surgery. And I cannot imagine driving two hours for follow ups either. That would also mean that my parents and boyfriend would need to get a hotel room or something up there for however long. It stinks, but we do not have a lot of money, so that is out of the question. And maybe I am weird for thinking this, but I would rather be around my friends and family while in the hospital than travel somewhere that is famous for this surgery and be terrified and alone. That is my risk that I am willing to take.

I'm going on Tuesday to meet with the neurotologist (Dr. Patni) who will also be performing the surgery. He will be giving me an audiogram (is that what they are called?) to find out exactly how much hearing I've lost in the my left ear. Once I have that, I will send a copy plus my MRI to House.

As for Dr. Field, he did tell me he has done HUNDREDS of acoustic neuromas. I did some searching of this forum, and two people have used him and were very happy. One of them was back in 2007. So I am guessing it is possible for him to do hundreds, as it looks as though 2007 was around the time he has moved here. So he's been doing these surgeries in the Central Florida for eight years, which also means he has been doing them while it seems a lot of innovative and new techniques have come about.

I also saw that Dr. Field and Dr. Patni talked to the local Orlando Acoustic Neuroma Association support group in April, and I contacted the co-leader of that group, and she said she really liked them. She is doing her surgery up in New York, however, because her family is up there.

So all this makes me feel a little better. I'm still scared to death. I am definitely more worried about preserving my facial abilities rather than hearing, and I will be discussing that with Dr. Patni on Tuesday. This forum has been very helpful, because I feel like I have a better idea of what I need to be asking. So Dr. Patni needs to be prepared to be grilled.

[CHD63]

Hi mmilazzo .....

Just FYI in case you have not seen it ..... the ANA web page has an excellent list of questions for physicians.  You might want to look at it or print it out before your appointment with Dr. Patni on Tuesday.

https://www.anausa.org/pretreatment/questions-for-your-physician

Many thoughts and prayers.

Clarice

[Alix May]

Hi, mmilazzo!

I won't tell you not to be afraid, because, here I am a few months past diagnosis with a much smaller tumor and I've run the gamut of emotions in that time. I will tell you what I tell myself: as far as mortal danger goes, it was statistically higher when I had my gallbladder out last year than with this surgery.

Unfortunately my symptoms are disabling pre-treatment, so I'm a bit terrified of post-treatment symptoms.

Like you, I am not seeking a second opinion. I knew what surgical option I was picking before I ever saw a neurotologist. I have pondered changing surgeons, but only because he is very concerned with preserving my hearing where my preference is preserving the facial nerve at all costs. But he did admit that it was *his* hangup, and my decision was entirely reasonable for my circumstances. So hopefully he is as "on board" as he seems to be. I'll see how I feel after my July MRI and appointment.

However, I can see why it would be recommended to go to the *best* surgeon you can reasonably get to. Complications from this surgery can have deep, life-long consequences. It can necessitate multiple surgeries, which is usually more expensive in copays than a brief hotel stay for loved ones. Two hours is not very far. I know, in Florida it seems like a lot. I lived there for most of the first 34 years of my life. I barely saw most of my extended family because they lived 40 minutes away and no one drives that far except holidays. Now I live in Michigan. It's 1.5 hours to the closest Neurotologist. 3 hours to the next closest.  I feel lucky there's one so close, actually! I did not except Grand Rapids to have an AN specialist, I really expected Detroit or Chicago to be my options. Ann Arbor at the closest. So if you hit a point that you *don't* feel comfortable, I hope you'll consider going outside the immediate area. And I'm glad you're sending info in to match opinions about surgical options just so you have the two to compare.

I hope Dr. Patni is exactly all you're hoping for in a surgeon and is able to ease your fears.

[alabamajane]

I wasn't sure how far Gainesville was to your area. I will say I drove 4 hours home from surgery and although it was not the most comfortable situation, it is "doable"..I only have to go back annually for checkups and MRI.  IF , and it has not been often, I need to see a Dr. I either go to local ENT or primary care Dr. But anyway,,

Another question I would ask Dr. Patni and Dr. fields, before surgery is what will they do if they get in there and the tumor is "stuck" to the facial nerve? Will they attempt to peel it away and hope not to damage facial nerve or will they cut it away and leave a sliver of tumor stuck to nerve as not to damage it and recommend radiation later to "kill" remnant. There is no way, to my knowledge, to know until during surgery how "involved" the facial nerve is..like you,, I too told Dr I wanted to save facial nerve over hearing nerve,, however, when they got in there the tumor had grown through the facial nerve therefore necessitating severing my facial nerve in order to remove total tumor. I tell you this not to scare you or make this harder for you but to give you more info to ask about. I woke up with total facial paralysis as a result but it's not the end of my life,,although I thought it was at the time!

It has been a long journey for sure and one I wish I had never had to go through...NONE of us wanted this. The best you can do for yourself is to ask everything you can think of to help you feel comfortable and confident. It sounds like you are trying to get there. Good luck next week.

[mmilazzo]

Yes! This is all good. Dr. Field already told me that if the tumor is stuck to a facial nerve, they will leave that part in there to limit facial paralysis. Then we wod do gamma knife. Now that I know more about ANs (I didn't know what type of tumor it was when I had the appointment), I am going to emphasize that this absolutely has to be priority #1.

I had my gall bladder taken out years ago, and i, too, read that gall bladder surgery is more life threatening than this, but yes, there seems to be way more complications with this one, and obviously recover is much longer and harder.

If I do not feel comfortable with the neurotologist, I will definitely be calling Shands!

[Alix May]

Are you starting to feel better as you learn more? I hope so.

[mmilazzo]

Yes, but I saw the neurotologist today, and he thinks it's an epidermoid tumor. I am sending my MRI and audio test results (I have barely lost any hearing) out to USC for a free consult.