Surgery for 3.2cm AN

[mmilazzo]

New member here. Found out I had a tumor on my brain on Friday, and I met with the neurosurgeon yesterday. It's a 3.2cm AN on my left side. I don't know the exact dimensions, but it was something like 3.2 x 2.8 x 2.3. I know both of the second numbers were 2cm.

Anyway, here's my history: I'm a 34-year-old woman. I noticed that I couldn't use a phone in my left ear a few years ago. I went to the ENT like two years ago, and he didn't think it was noteworthy. He did tests, and yes, they found my left ear was slightly worse than the right, but I could live with it. He didn't recommend or even mention an MRI.

Fast forward to about ten months ago. I started getting dizzy and my legs were getting weak when I stood up (not all the time, but really only when I stood up). The symptoms started to get worse. The progressed to severe head pain, ringing in my ear, blurred/double vision, feeling like I was going to faint, and numbness in my legs. But this would only last for a minute or two. And this was still only happening when I would stand up (and only sometimes). Then I had two severe episodes. For one, I couldn't really see for about an hour and I had a floater in my vision. For another, I couldn't see for about an hour, had a floater, and had a severe headache that lasted way longer for a minute. I finally took some aleve, and it went away, and then I felt weak and confused the rest of the day.

That's when I knew I had to go to the doctor. Doctor thought it was orthostatic hypotension. He referred me to an eye doctor and cardiologist. The eye doctor found blood spots behind my eyes. He said I had retinal vasculitis (an autoimmune disease), and that it was probably the reason I was getting dizzy and it could be all over my body. He said I needed to see my general practitioner immediately.

Next day I saw him, and he ordered an MRA of my neck and head. Well, I knew something was wrong when the next day after that, his office called me and told me I had to go in for an MRI of my head immediately. But because of HIPPA, they couldn't tell me why. I was a nervous wreck of course.

So that's how I found my acoustic neuroma, who I call Louie. The neurosurgeon says that nothing is an option except surgery. I've already lost some hearing in my left ear. My neurosurgeon referred me to a neurotologist who will also perform the surgery with him. That appointment is on Tuesday, and he will check my hearing. The surgery will not happen for a month or two--the two doctors need to coordinate.

I know people get tons of second of opinions, but I really had a good feeling about my doctor, Melvin Field (Central Florida). He spent so much time with me explaining everything. I like that it is done with another surgeon who specializes in the ear part. It makes sense. But I also feel like people are pressuring me to shop around. I just want to get the surgery over with. And I feel good about Dr. Field. Is that wrong?

Here's my main concern: facial paralysis. And just that it seems like a pretty scary surgery in general. I mean, it's brain surgery, right?! My doctor said it was like the Algebra I of brain surgeries -- not as simple as addition or even division, but not as complex as Calculus.

I don't think I have any particular questions. I just want to share my story. I am very very very very scared.

[Jet747]

MMilazzo,

I can't say I know exactly what your feeling but I just went through the surgery and things turned out very well.  Mine was also on my left size and was quite large.

It was a bit scary for me too although it helped me not to focus too much on the negative stuff.  The day before surgery my wife and I went to a movie (Mad Max, horrible movie) but the movie did provide a bit of a mental escape.

I was in hospital for 5 days, 3 of which were in ICU.  I don't have too much advice specific to that but I would say that having a friend/relative/spouse in the room with me was very calming, hopefully that is an option for you.

I started physical therapy and occupational therapy right away which really helped with the recovery as it gives you something else to focus your energy and thoughts on.

I think everything will go just great for you, keep up your positive attitude and perhaps you should give Louie a middle name just to be funny!!!

Best of luck!    

[mmilazzo]

Thank you!

It makes me feel better to read everyone's stories. I know I am not alone. My mother and father live in Central Florida, too, and I am certain they will be there most of the time, along with my live-in boyfriend. I was a pretty active person before this -- an avid runner and walker, particularly with my five-year-old labradoodle (who needs tons of exercise). I'm hoping that may help a little with recovery re: balance.

I also think the thing that will really get me through this will be the company of said labradoodle.

[ANGuy]

Be careful of being told what you want to hear, and/or hearing what you want to hear.  Your Drs. could very well be the perfect team for you.  But, the idea that this is the Algebra I of brain surgery I think is incorrect.  I have been told by two neurotologists, and a friend who is a plastic surgeon who specializes in facial reconstruction including nerve grafting/repair etc. that this surgery from a difficulty standpoint is significant.  One neurosurgeon I spoke with in a consult told me that this was the single most difficult brain surgery to perform.

I don't think you need to be freaked out about all of this, and it wouldn't do you any good anyway.  Thousands of these surgeries are performed with good results.  But, this ain't no gall bladder they are taking out before they hit the links for a 10 AM T-time.

I would get a second and even a third opinion.  Those other opinions could very well confirm that your current team is the correct choice.

[Kerrybr92]

I think the surgeon was trying to not freak you out but I do think that it is incorrect to state that it is not that complicated.  Actually it is a little condescending.  This is a big surgery and you should be prepared for all of the potential complications and recovery issues.  But you can handle it. No need to freak out.

I think you should get a second opinion.  This is just too serious not too.  Make sure you ask them how many AN surgeries they do each year.

I think the thing I wish is that I was better prepared for the aftermath.  I thought that there was no way I would get facial paralysis but I did.  I have about 75% movement now.  I also thought that my balance would be fine. It was not at first but now is 90%.  I also did not anticipate that running, as I did every day prior to surgery would not be possible .  The jarring is not good for my head.  I don't know what it is but I just can't do it.  But my life is good!

You will get through this just fine. 

Good luck!

[mmilazzo]

Thanks for the advice.

After doing research, it seems like this doctor is THE doctor in Central Florida for acoustic neuroma surgery. It's his specialty. I'd love to talk to someone from Orlando who had the same surgery to see if they were treated by another doctor, but I don't know anyone. I emailed the guy who apparently is the leader of the ANA group in Orlando, and he hasn't emailed me back. I wouldn't know where to begin to even look for a second opinion. The few neurosurgeons here do not even list acoustic neuromas as their specialties. Dr. Field does.

[mmilazzo]

I guess I would also like guidance on exactly what I would be getting a second opinion on. I think we can all agree that any neurosurgeon will recommend surgery in my case. And no surgeon I see is going to say that he or she is bad at what he or she does or that he or she hasn't done many of these surgeries.

The one I saw told me he had done hundreds and hundreds. Whether he thinks the surgery is Algebra I of surgeries is relative. I don't even know if he said it was the Algebra I of brain surgeries of Algebra I of surgeries in general. I'm sure there are more complex spinal surgeries out there.

So what I would be going on would be 1) convenience and 2) warm fuzzy feelings. Convenience--well, the hospital is five minutes away from my house and so is his office and the neurotologist's office. And I did get the warm fuzzy feelings. So I guess I just don't see the point in getting a second opinion.

The tumor needs to come out. Period. I cannot travel out of state for the very best in the country or even the world. So I am limited to him and probably one other neurosurgeon that is 45 minutes away from me.

[ANGuy]

I guess I would also like guidance on exactly what I would be getting a second opinion on. I think we can all agree that any neurosurgeon will recommend surgery in my case. And no surgeon I see is going to say that he or she is bad at what he or she does or that he or she hasn't done many of these surgeries.

The one I saw told me he had done hundreds and hundreds. Whether he thinks the surgery is Algebra I of surgeries is relative. I don't even know if he said it was the Algebra I of brain surgeries of Algebra I of surgeries in general. I'm sure there are more complex spinal surgeries out there.

So what I would be going on would be 1) convenience and 2) warm fuzzy feelings. Convenience--well, the hospital is five minutes away from my house and so is his office and the neurotologist's office. And I did get the warm fuzzy feelings. So I guess I just don't see the point in getting a second opinion.

The tumor needs to come out. Period. I cannot travel out of state for the very best in the country or even the world. So I am limited to him and probably one other neurosurgeon that is 45 minutes away from me.

What is your point?  You asked about something you have made your mind up on and now want to argue about it?  Please, by all means believe someone who tells you they have done "hundreds and hundreds"  of them and that this is 9th grade stuff like Algebra I.  Good luck with that.  I won't be answering any more of your questions that's for sure.

[ppearl214]

Hi all,

I would like to make a suggestion here.  When someone is newly diagnosed, such as mmilazzo, the tone for which we made our thoughts made really needs to be a bit more compassionate.  It is a daunting experience, as we all know, to be newly diagnosed and have to figure out what to do. 

We need to keep in mind that each AN journey is unique for each of us. Geography, medical insurance coverage, thought processes are all unique.  Yes, we highly tout getting a second opinion as surgery for an AN (or for any major medical issues) is crucial to our decision making process.

How we share our thoughts here is also crucial. 

Although we may be passionate about how we feel about a topic, I remind everyone to keep it respectful!

I will be watching this thread. It is an important discussion that any newly diagnosed AN'er can learn about.

Now back to your regularly scheduled "respectful" discussion!
Phyl

[mmilazzo]

I was just trying to share my story. Sorry if I seemed like I was being argumentative, but it is frustrating trying to figure out all this stuff, and I actually do not know what to get a second opinion on here. I thought this place could be one where I could share anything, but I guess I was wrong.

[NYLady]

Hello MMilazzo...

First of all, let me say we all understand what you are going through and how overwhelming this diagnosis can be.  Maybe we could just hit the "reset" button and start over.  I would hate to see you miss out on the valuable input you will have from this forum.  No matter how much reading and research we all do, there is more to be learned from the personal experience of others. 
As for me, what I have gained here is beyond price...learned about doctors, symptoms, treatments, results and personal angst regarding this little demon we are dealing with.  Make no mistake, it truly is a different journey for everyone.  Just like in any large "family"  people are different and express their emotions differently....but one thing in inherent in all of our members, they understand and care about your experience and are trying to be helpful.  As has been mentioned,
"respect" in the way messages are posted is paramount.  Such a sensitive subject that leaves feelings exposed and raw, deserves an additional degree of compassion.  Please do not withdraw your presence from the forum....ask what you need to know and take from the replies what is of value to you.  Believe me, whenever you feel so alone in this walk, here, in this place, you will find that you are among those who truly understand and will share their walk with you.

Wishing you the best...
NYL

[Cheryl R]

You are going thru a scary time and wanting to make sure one is getting the best treatment can be hard even if one has a dr  who is well qualified.       I would make sure that your dr has done hundreds of ANs  and not just 100's of various types neuro surgeries,              Drs who do many surgeries can think of the condition as routine and will have a protocol he knows well.     But a patient does not have this same feeling as it is their body and health issue and want to make sure all is being done right with someone with lots of experience.          One can feel insecure even if it is a good experienced dr they are seeing.           I am a retired nurse and been on both sides of this.           I saw a very experienced neurotologist here in Iowa and he is one that people would come to for that 2nd opinion from even out of state.    One can read on here from some to get a 2nd opinion but in some cases that is not needed.     Others do need to have that done as ANs are not a common tumor and a very experienced dr is needed.       You can see several drs and they may all have different opinions on which type of surgery to use, do wait and watch for a time or go for radiation. You have to go with your own gut feeling that you are comfortable with.     This is not always the answer someone may want as they would rather have someone else make the decision for them.             The closest dr may not always be the answer unless they have LOTS of AN experience.                  I wish you well.                  Cheryl R

[mmilazzo]

Thanks.

Since everyone is an advocate of second opinions, can someone tell me exactly what I would be getting a second opinion on here? I genuinely am interested.

Would the second opinion be that my tumor may in fact not be a tumor nor an acoustic neuroma? If so, then yes, I agree, I should get a second opinion. I will prepare my results and send them to the House Clinic, and that should confirm that it is an acoustic neuroma or not (seeing as though I will have my neurosurgeon diagnose it as an AN plus my neurotologist--so that's two professionals already). But I in no way want to travel to get brain surgery to be far away from my friends, family, and dog--that is the one thing I will not sacrifice. AND I cannot afford that AT ALL. So actually going anywhere else but Orlando, Florida, is not an option.

So that brings me back to getting a second opinion on the actual people performing the surgeries. And while two people on here may not feel comfortable with the fact that my doctor made an off-the-cuff, trying-to-calm-me statement about the surgery being like Algebra I, it did not bother me whatsoever. I do not think the doctor minimized the surgery in any way during my visit. He was very real with me. The comment about it being like Math was something he said while we were leaving--it wasn't the way he presented the surgery. Him saying that is VERY relative. Just because one surgeon thinks something is the most complicated surgery ever does not mean that a good surgeon HAS to agree. I hate to compare surgery to my job, which is professional writing, but let me make the comparison: Where I work (a large financial industry), the majority of people think writing an essay, even on something on which they are an expert, is one of the HARDEST tasks that they will ever have to do. I, on the other hand, think it's way easier than, say, Algebra I, which is actually very challenging for me.

We all know that the size of my tumor does not make it a candidate for radiation. The only option I have is surgery. Since I know Dr. Field is very experienced in removing acoustic neuromas (yes, I specifically asked him how many acoustic neuroma surgeries he's done--not just brain surgeries--and, in fact, he has been doing them for a LONG time--I found a post from years ago on here from someone who highly recommends him) and does so with a team, including a neurotologist, and also is part of ANA, I do feel he is qualified enough. I will get the free second opinions from the famous teams who are known for this surgery in the United States, but I do not see that, if they still believe surgery is necessary (which I'm sure it still will be), making me change my mind about the neurosurgeon, even if I have only seen ONE neurosurgeon and ONE neurotologist.

[CHD63]

Hi mmilazzo .....

The users on this forum who are post-treatment for the most part are here to share their experiences ..... not to try to persuade a newly diagnosed patient what he/she should do.

In looking over your posts, you seem to be very comfortable with Dr. Field, both in terms of his experience and his bed-side manner.  These are the most important things to consider in the decision-making process.  There is no particular need for a second opinion unless in your gut you are uneasy and want some confirmation.

One reason some patients want a second opinion is confirmation about the surgical approach suggested if their hearing is still intact.  Retrosigmoid and Middle Fossa approaches offer some hope of saving hearing, whereas the Translabyrinthine approach will automatically result in total deafness in the AN ear.

You are the one to call the shots here ..... not your doctors, not your family, not any user on this forum, not any well-meaning friends, etc. ..... it is your body and it should be your decision for what you do.  I think you are on the right track and just keep planning on what feels right to you.

Thoughts and prayers.

Clarice

[mmilazzo]

Thank you. I am sorry I am being so blech about this. I don't mean to. Thank you, everyone, for trying to help and providing support. I appreciate it.