Translabyrinthine

When it comes to acoustic neuromas it really does come down to personal choice and patient preference (for the most part, I do understand there are some cases where this isn't as true).

There are three approaches available surgically to remove acoustic neuromas Middle Fossa, Translabrinthe and Retrosigmoid, one is bound to work for you if surgery is what you choose.  Each also has it's risks and it may come down to what you want to have preserved.  For me the most important thing was to make sure my facial nerve receives the utmost attention and focus so as to not damage it permanently.

I did my research and had made my mind made up before I even met with the first doctor.  I just had to hope they saw it my way and would make it easy.  Based on my research my choice was to have surgery via the Middle Fossa approach.....WELL.....there is a reason why we see the experts because they know more about these tumors than any amount of research I could have done.  Needless to day Middle Fossa wasn't an option.  The reason Middle Fossa wasn't an option is due to the size of my tumor, it is only effective for smaller tumors.

When I spoke to both doctors they made their recommendations and both agreed that WW (watch and wait) as well as radiation (gamma knife) were not the option for me, thankfully I agreed, what I didn't agree on was that the approach I didn't want was the one they were recommending, the dreaded translab.  With translab there is guaranteed permanent hearing loss but also the highest chance of saving my facial nerve.

During translab surgery part of the ear anatomy is damaged enough that hearing loss is caused. It is also the best approach for seeing the facial nerve first and being able to get it out of the way while removing the tumor and that means a better chance of protecting the nerve.  In my case the surgeon will remove the tumor in it's entirety unless the facial nerve is compromised, and, because AN's are slow growing this may not even be a cause for concern in regards to it growing back.  If the facial nerve is damaged it can cause facial paralysis of the permanent variety and a list of problems to deal with including being deaf in one ear (SSD= single sided deafness).  With facial paralysis comes potential for your eye to become damaged since you won't be able to blink, you will need to add drops to your eye constantly and wear a patch at night. There is potential to fix it with surgery if need be though.




The translab approach enters just behind the ear so the scar will be well hidden by my hair.  It is also one of the most direct approaches and estimated 8 hours in the operating room.


I am choosing surgery!

Second Consult

Today I met with Dr. Lupo of Rocky Mountain Ear Center.  I am happy to say that I have chosen him and his team to perform my surgery.

I was scheduled to be to my appointment at 8:45 in the morning but the day before the office called and asked me nicely if I would mind coming later on at 3 so they could accommodate an emergency situation.  I of course said yes because I would hope the same would be done for me.  SO my husband and I waited and finally went back about 3:20, this made me think that they squeezed me in to make sure I didn't have to move my appointment to an other day.  I again did a hearing test and had similar results from the one the previous appointment. My right ear is at a '0' and my left ear is at a 15 on the  Hearing Test Results Form dropping lower for low tones. 

17.63mm x 19.64mm x 15.31mm

We went straight in to see the doc.  I was so happy to have my husband there again, it just puts me at such ease. So please remember do not go to these appointments alone, Sean asked a few new questions that were very helpful in guiding us to some answers we didn't even realize we needed.  The doctor was really good about showing us diagrams and explaining in great detail why certain approaches would be better for me over others.  I appreciate how patient these doctors are with answering questions and taking their time to truly be there for the patient!!  He even measured my MRI scan and printed it out for me so that I could really see the size of Arnold.


Dr. Lupo proceeded with sending my information to the scheduling assistant to begin the process of connecting with the insurance company, in the mean time he will get with the neurosurgeon to find a date for surgery.  He pulled out his phone right then and there and looked at his calendar and said he thinks the last week of October or the first week of November should be available.  I will meet with the neurosurgeon once the scheduling assistant gets everything set with the insurance company.  I was very happy that he didn't make me wait until I met with the neurosurgeon and moved forward with getting things in motion.

Dr. Lupo trained with the well known Dr. Friedman and Dr. Brackmann at the House Clinic and my confidence in his skill is high.  He quite literally wrote the chapter on preventing CSF leaks in the manual.  We have to play the waiting game a little more but this time around I don't feel as stressed because there is more of a plan in place.  I keep thinking to myself how long everything is taking but in reality it hasn't even been a month since I found out that I had a brain tumor.  I feel blessed that I don't have to wait months and months for answers like some people do.  BE PUSHY don't let doctors put you aside and not make you a priority, at the same time be respectful that they are very busy people and do the best they can but a squeaky wheel gets the attention.

Here are the questions we had to ask and the answers in red for the ones we got.
  

 How many AN's have you removed? How?

A. 100’s

      How long is the wait for surgery? 

A. End of Oct beg of Nov

    What specific training in AN surgery have you had? 

A. Trained at House Clinic

        What microsurgical approach do you recommend given my tumor

        size, location, age, health and level of hearing? Why? (If the tumor is under 2.5 cm, ask about radiation therapy.) 

A. Translab because of size

    How many ANs similar to mine have you removed with the surgical approach you recommend? 

A. Most common

    Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.) 

A.  Yes

      Will a team of physicians with more than one specialty do this surgery? (The norm is a Neurologist and a Neurosurgeon. Some hospitals assign an internist to monitor your overall health before and immediately after surgery.

A. Yes

      For a tumor the size and shape of mine, what have been your results with respect to preserving permanent facial function? (There is actually a rating system for retention of long-term facial function, called “the House-Brackmann scale. Your surgeon should be familiar with this. You can also Google this to learn more.) 

           A. Not many cases of CSF leak, not common with translab for paralysis but still possible

      Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.) 

A. Always possible

      How long is your typical surgery for a tumor like mine?(The shorter you’re under anesthesia, the better, and your recovery could be somewhat less difficult.) 

A.  8 hours

      Do you anticipate total tumor removal with a single operation? If not,what are my follow-up options? Surgery? Radiation? (This is important. Unless yours is an unusually complicated case, a single surgery to completely remove the tumor is the norm for the best AN surgeons. Unless there is a very good reason otherwise, one surgery is the only acceptable answer.) 

A. Yes unless facial nerve is compromised

      What is the likelihood that my remaining hearing will be preserved after this surgery? (With Translab, it is zero. With Retrosigmoid and Middle Fossa, it is anywhere from 20% to 60%, depending on location, pre-existing level of hearing loss, and experience of the surgeon. Discuss the pros and cons of your situation, and the trade-offs relative to the side effects of each approach.) Google “acoustic neuroma surgical approaches.” 

A. Zero

      If hearing preservation is unlikely,will you honor my wishes not to cut the facial nerve under any circumstances, even if it means leaving a sliver of tumor behind? (The ramifications of cutting the facial nerve are substantial, leaving the AN side of your face, including your eye, essentially paralyzed. There are follow-up surgeries that can restore some mobility, but in my opinion you want to avoid having your facial nerve severed. Period. Unless your life depends on it.) Google “acoustic neuroma facial paralysis.” 

A. Will always try and preserve facial nerve

      In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop? 

A. In most cases the tumor does not grow back

      Given the approach you’ve recommended, what has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak, eye issues, and headaches? 

A.  Not CSF leaks since at this practice, actually wrote the chapter on preventing CSF leaks during this surgery (literally)

        What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.

A. Choosing translab over retrosig limits headaches, pain management as well

      How much discomfort should I expect from headaches and from the incision after surgery? 

A. 

      Does your hospital have a neurological intensive care unit?

A. Yes, plan to spend at least one night

      About how many days will I be in the hospital? 

A. up to 5 days pending complications

      How often should I schedule follow-up MRI's after treatment? 

A. 6 months, 1 year 2 years less over time

      Will I need follow-up care? Physical Therapy or Vestibular Therapy referral?

A.

                If you're comfortable with the surgeon and the answers, get at least three references, preferably people of similar age, health, and with tumor size. 

A.

      All other things being equal, when can the surgery be scheduled? 

A. Will reach out to the neurosurgeon immediately

         Is there anything that could prevent surgery from happening once it is

         scheduled.           

A. Viral cold, digestive disruptions

         How much will you need to shave my head?

A. about 3 inches by 6 inches

         How close to the brainstem is the tumor located?

A. compressing but not effecting the brainstem

Join the club, you really are not alone.

The first thing I did when I found out I had an acoustic neuroma was visit Dr. Google because of course Google knows everything right!?  When someone is diagnosed with an ailment people will tend to say "well don't google it because all it will tell you is that you have cancer or are going to die" but of course we never follow that advice.

When I googled acoustic neuroma the first time surprisingly enough WebMd wasn't the first thing to pop up in the search the ANA was.. the Acoustic Neuroma Association, believe it or not there is an entire organization dedicated to this tumor.  Also, I should add that not once have I found that I am going to die or that I have cancer, in fact it is just a lump of cells and is benign and simply needs to be remove (haha "simply").

The second thing I did was visit Facebook and did a search which brought me to a group called Acoustic Neuroma and another page called Acoustic Neuroma Friends.  These pages are filled with people who are also plagued with this tumor, according to NORD the statistics of someone having an acoustic neuroma are 1 in 100,000 with 2,500 new people diagnosed each year and rising as methods for finding these tumors are improved.  Finding a page on Facebook with over 2,100 members was pretty exciting.  I joined both pages introduced myself and have had nothing but huge amounts of support since.

There are support groups in many cities and states and if there isn't one the ANA makes it easy to establish one.  Knowing there are other people who have a similar experience puts me at ease.  The other thing is that people who are diagnosed with this are so straight forward never afraid to share worst case scenarios or to "brag" about their perfect outcomes....both sides are appreciated especially by someone who has yet to have surgery by providing the bad outcomes it makes me aware and teaches me what to ask the doctors, the positive stories give me hope that anything is possible.

Mark Ruffalo

The third thing I did was go to youtube and do a search, what I was hoping to find were personal accounts from people who have gone through this.  One of the best stories I found was from an actor, Mark Ruffalo.   He has an amazing story, but I will keep that for him to tell! Doing this also put me in the direction of finding many many blogs (just like mine) telling their story and venting to the little know world of acoustic neuroma and vestibular schwannoma.

You just have to appreciate that there are people out there willing to share their story because without them I would feel lost and never would have taken time to share my story for the next person who has to endure this blasted tumor.  I hope everyone feels inspired to share their story because we are in this together and your support is the best support one can find.

Today vs Yesterday.

I don't know if it is just me but each day brings new challenges and also brings new delights.

I Woke up yesterday and got out of bed just a little too quick because as soon as I walked down the hall I literally fell into the wall and almost whacked my head on the thermostat......I then proceeded to sit on the couch for the next hour as my head spins.  Needless to say the rest of my day consisted of very slowly moving and a lot of sleeping.  Going to my daughters soccer game wore me out and I just sat there and cheered her on, felt like I was the one playing the game by the end of it though.

I also started thinking I was getting a sore throat or the start of a cold but I am not sure that is the case I think it may be related to my AN and plan to ask at my second consult on Wednesday.

Today, I woke up and felt rested which is a first in the last month, but I also didn't feel "good" I was ready to head to the clinic and get checked out.  After being convinced to go to breakfast at my favorite little cantina first I felt better but had some issues swallowing.  We stayed and watched the Bronco game (WINNER!!!) and lucky for me one of my besties showed up to watch as well and it was great to spend time with her!  I didn't really have an appetite so just snacked on some chips and queso and because I am not drinking alcohol I passed on the mimosas and treated myself to a good ol Shirley Temple!

When I got home I had a boost of energy and managed to get some laundry done and then POOF just like that energy gone, so I took a nap (it is my new idea of fun).  It did me some wonders and felt refreshed.  I got up to finish the laundry with some help with my awesome daughters and felt great! As I was making the bed I all of sudden realized that there was no ringing in my ear....I even pushed on it to plug it and NOTHING it is literally the first time since March that my ears have not had tinnitus, it was short lived and came back about 10 minutes later but it was a nice break!

The point I am trying to make is that some days are not so good while others are.  I make sure to make note of all symptoms and changes just in case it is a sign of some sort of significant change.  At this point I feel informed but also feel as though there is so much unknown in this whole journey so better safe than sorry.

One day at a time...so much easier said than done.

The good, the bad and the ugly.

I am doing my best to stay positive - you may notice it is kind of a theme with me.  I admit there are times where I am "fake" positive but as they say fake it until you make it, right?

I have done pretty good so far, owning the idea of having a tumor, making light of it and trying to not let it control me...but that changed yesterday, Arnold finally got the best of me and reminded me that it is controlling me and my life and that I will have to make some changes to my life from here on out.

You see I love people I love to go and spend time with people go out and enjoying life, well yesterday I went to Happy Hour with my work peeps to a really awesome place that had an indoor bocce ball court and it was right up my alley!  I played a few games of bocce ball, and hung out with some great people, I am choosing to not drink alcohol until after my surgery and I didn't mind not drinking in fact I drank cranberry juice the whole night....what really got me was how damn tired I was, I can go go go (just ask my husband, I am always the last to leave as he says) and love to.  I was home by 8:30 and you would have thought it was the day after drinking a bottle of wine the way I felt but in reality I had over done it and didn't listen when the fatigue set in, I had an awful headache and was beyond exhausted.  What a crummy way to just have to admit that I need to slow down and take it easy.

I have a list of symptoms but by far there are two that have bothered me the most.

Fatigue: all I want to do is nap, I always feel like I have not slept for days after running a marathon.  I try to explain how exhausted I am but I can never explain it enough and I know how important it is to rest but when I am driving and feel as though I am going to fall asleep it just scares me to know how difficult it is to deal with such an invisible symptom, it is bad enough that this whole thing is invisible but to have a need to sleep all the time just SUCKS.

Memory:  OR LACK THERE OF......people who know me are aware that I have a pretty good memory and just don't forget things.  I am having a hard time with that lately, over the past two months I started noticing a couple of things, one is that when I would go to say some things they wouldn't come out it was like I just forgot everything that I was going to say and I am sure I would just have a dumb look on my face.  The other is when having a conversation I will be 5 minutes deep in the chat and suddenly I just forget what we were talking about and have to ask them to remind me what we were talking about.

Tinnitus: This one is more so annoying, there are times where it is so loud I just want to shake my head until it stops, the worst is when I lay my head on my pillow with my tumor side down, my ear rings even more when that happens.  When driving if I hit a bump in the road my ear chimes and when walking outside the wind causes a very loud swooshing sound.

Headaches: these are what caused me to get an MRI that lead to my diagnosis, I am still being treated for my headaches as though they are not associated with my AN and it is helpful but I am worried about after my surgery and having headaches that are not fixed with my current medication.

Hearing loss: mine was not gradual, at least I never noticed it rather I woke up deaf in one ear. It has improved and then gotten worse again and the better again - I go back and forth with this symptom....the reason is because I know that once I have my surgery I will loose my hearing permanently and will have to deal with single sided deafness (SSD) so either I wish it would just go away now so  I can start to deal with it BUT the other side of me wishes I could make the most of the time I have left with my hearing like being in a loud place without being overwhelmed or talking on the phone with my left ear.

All of these symptoms make for a long day in my world lately and I mostly deal with them but I feel like I need to explain that I am dealing with them so that others will understand why I am irritable or not present.

I hope I am not making people tired of being supportive - I hope they are not getting sick and tired of me always talking about my acoustic neuroma.  I just don't know what else to talk about, I just rely on them to drive the conversation away from my daily struggle.  I am so thankful for the people in my life who go out of there way or take the extra time to make me feel better.

It isn't just happening to me.

I am staying positive, trust me I have my moments that start to drag me down but then I look at my lovely husband and admire how strong he is being through "my" diagnosis.  I know it is hard on him and he has garnered a lot of courage to have patience with me as I wait and research and try to process everything that is going on and think about what my life will be like once I have surgery.

Today I realized it is wearing on him, I know because his patience is starting to fade.....this is no and I mean NO fault of his because honestly mine has too.  The only thing keeping my mood from dropping drastically is the anti-depresant my neurologist prescribed me prior to finding out about the tumor.  It was meant as a treatment for my headaches but I know it couldn't have come at a better time to help me get through this.  My spouse on the other hand all he has to get through this are his own thoughts and perceptions of this bump in our lives.

While it is easy to think about all of the things happening to me, I also need to thank him for loving me.  I have even apologized to him for putting him through this....he tells me I don't have to be sorry because we will get it removed and move on....that might sound cold and short answered but he is right, we have to work through it and then start our lives off in a different way.

Our kids have been doing ok with the whole situation because we are staying as normal as possible, I stay strong and if we do talk about it I am very matter of fact in saying the truth to things and making sure they see the strong side of their mom not the utterly terrified, anxious and on the verge of tears mom.  I sat them down and talked to them just a few days after I found out and they asked their own questions and ultimately they both have asked to just not talk about it and I will respect that.  I do remind them if they have any questions to make sure and ask me so we can get them the answers they need but I won't push them.  They are smart and they may not understand 100% what is going to happen but honesty is key and they trust me to not lead them astray and to always be open with them.

I have been getting extra hugs and they have been amazingly obedient which tells me they are thinking about it in their own way.

I love my family and I am one lucky girl to have the support I do from my friends but the three people I get hugs and kisses from each night light the way for me on so many dark paths to help guide me back to living and loving life to the utmost enjoyment.

I will do what I need to do for me to get through this and I will also respect my loves as they go through it too and allow them to process as necessary.  Take a breath before you speak, losing your cool will not help anyone in this situation especially you!

First Consult

Today I met with Dr. Feehs of Denver Ear Associates.  I really liked him which makes me happy because the reviews I read had me thinking he was going to be heartless and a jerk and that his office staff would be rude and inconsiderate.  They were all nice!.

I arrived about 40 minutes early for my appointment and they actually brought me back early to begin my hearing test.  The hearing test took about 15 minutes and came back with the expected results: my right ear is perfect and my left ear has hearing loss.  The hearing loss in my left ear appears better than my last one but the difference in the two is farther apart on the scale.  My right ear is at a '0' and my left ear is at a 10 Hearing Test Results Form dropping lower for low tones.

We waited for about 30 minutes and went in to see the doc.  I brought my husband along with me and also brought my computer, I forgot to print out my questions so brought the computer to just type them down.  Do not go to these appointments alone, I had the questions there with me and still forgot to use them because the conversation was going smoothly, Sean was really good about making sure we asked the questions and we only managed to miss a few on the list but I can get those answered at my next appointment which is with the neurosurgeon tomorrow.

The plan set with this doctor is to proceed with translab approach with also guarantees hearing loss.  Regardless there will be hearing loss and with surgery there is just more of a chance for it but more of a chance to resect the entire tumor.  Once the surgeons get in my head they will do everything possible to preserve my facial function even if that means leaving part of the tumor in tact.

The hearing nerve is a sensory nerve which means once it is damaged there is no reversing the damage and the nerve its self will not heal over time.

The facial nerve is a motor nerve which means it can heal its self over time possible so while I may have facial paralysis after surgery it could be temporary. This we won't know until surgery is done.

As of right now I am moving forward with scheduling a surgery date with this surgeon while I wait for a consult with the second surgeon on the 28th. I choose to move forward because I can't get in for surgery until Mid November and by waiting to see the other surgeon the chance of my surgery date being even later is highly probable and that doesn't work for me.  Tomorrow morning I will meet with the neurosurgeon to discuss the surgery more in depth.

           Diagram showing where my tumor is located (left side)
the tumor starts in the bone that covers the nerves and the mushrooms out and is pressing on the brain. It is a good size right now and not causing damage as of yet, waiting is not an option though.

Here are the questions we had to ask and the answers in red for the ones we got.
  

 How many ANs have you removed? How?

A. hundreds, radiation & surgically

How long is the wait for surgery? 

A. November

What specific training in AN surgery have you had? 

A.

What microsurgical approach do you recommend given my tumor size, location, age, health  and level of hearing? Why? (If the tumor is under 2.5 cm, ask about radiation therapy.) 

A. translab

How many ANs similar to mine have you removed with the surgical approach you recommend? 

A. The size of my tumor is most common in my age group

Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.) 

A. Yes

Will a team of physicians with more than one specialty do this surgery? (The norm is a Neurotolgist and a Neurosurgeon. Some hospitals assign an internist to monitor your overall health before and immediately after surgery.

A. Yes, neurotologist and neurosurgeon

 a tumor the size and shape of mine, what have been your results with respect to preserving permanent facial function? (There is actually a rating system for retention of long-term facial function, called “the House-Brackmann scale. Your surgeon should be familiar with this. You can also Google this to learn more.) 

A.

Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.) 

A. unknown, but will try to prevent

How long is your typical surgery for a tumor like mine?(The shorter you’re under anesthesia, the better, and your recovery could be somewhat less difficult.) 

A. 6-8 hours

Do you anticipate total tumor removal with a single operation? If not,what are my follow-up options? Surgery? Radiation? (This is important. Unless yours is an unusually complicated case, a single surgery to completely remove the tumor is the norm for the best AN surgeons. Unless there is a very good reason otherwise, one surgery is the only acceptable answer.) 

A. if nerve effects facial function part of the tumor may remain with possibility of     radiation in the future if it grows

What is the likelihood that my remaining hearing will be preserved after this surgery? (With Translab, it is zero. With Retrosigmoid and Middle Fossa, it is anywhere from 20% to 60%, depending on location, pre-existing level of hearing loss, and experience of the surgeon. Discuss the pros and cons of your situation, and the trade-offs relative to the side effects of each approach.) Google “acoustic neuroma surgical approaches.” 

A. 0%

If hearing preservation is unlikely,will you honor my wishes not to cut the facial nerve under any circumstances, even if it means leaving a sliver of tumor behind? (The ramifications of cutting the facial nerve are substantial, leaving the AN side of your face, including your eye, essentially paralyzed. There are follow-up surgeries that can restore some mobility, but in my opinion you want to avoid having your facial nerve severed. Period. Unless your life depends on it.) Google “acoustic neuroma facial paralysis.” 

A. goal is always to preserve facial function

In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop? 

A. more often yes with surgical removal, mutated growth possible with radiation (he hasn't witnessed it himself though)

Given the approach you’ve recommended, what has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak, eye issues, and headaches? 

A.

What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.

A.

How much discomfort should I expect from headaches and from the incision after surgery? 

A.

Does your hospital have a neurological intensive care unit?

A. one overnight stay

About how many days will I be in the hospital? 

A. 4ish days

How often should I schedule follow-up MRI's after treatment? 

A. one year if fully removed, possibly 6 months if not fully removed

Will I need follow-up care? Physical Therapy or Vestibular Therapy referral?

A. recommended therapy after complete healing 9would like to review this more)

If you’re comfortable with the surgeon and the answers, get at least three references, preferably people of similar age, health, and with tumor size. 

A.

All other things being equal, when can the surgery be scheduled? 

A. November

Is there anything that could prevent surgery from happening once it is scheduled?

A. viral infection or gastro issues like vomiting

How much will you need to shave my head?

A. should only need to shave a small area

How close to the brainstem is the tumor located?

A. pushing on the brain

Anxiety, wanting to know but scared to.

I have my first consultation with Dr. Feehs at www.denverear.com . It is my first of two with the second being on September 28th with Dr. Lupo at www.rockymountainearcenter.com .  I think I am prepared, I have my MRI disc to bring and I have a list of questions some of my own and some that were recommended to me.

Here are the questions I plan to bring with me (I will add a new post with the answers to the questions as well! (A. - this is for when you print it to write your answers.)

Please share any additional questions in the comments below.

Acoustic Neuroma Surgery: Questions you should ask prospective surgeons

(Many of these questions came from the ANAUSA website. I have added others, made some comments, and modified some others)

How many ANs have you removed this month and so far this year? 

A.

In your career, how many AN surgeries have you performed, and over what period of time? 

A.

What specific training in AN surgery have you had? 

A.

      What microsurgical approach do you recommend given my tumor size, location, age, health and level of hearing? Why? (If the tumor is under 2.5 cm, ask about radiation therapy.) 

A.

How many ANs similar to mine have you removed with the surgical approach you recommend? 

A.

Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.) 

A.

Will a team of physicians with more than one specialty do this surgery? (The norm is a Neurotolgist and a Neurosurgeon. Some hospitals assign an internist to monitor your overall health before and immediately after surgery.

A.

For a tumor the size and shape of mine, what have been your results with respect to preserving permanent facial function? (There is actually a rating system for retention of long-term facial function, called “the House-Brackmann scale. Your surgeon should be familiar with this. You can also Google this to learn more.) 

A.

Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.) 

A.

How long is your typical surgery for a tumor like mine?(The shorter you’re under anesthesia, the better, and your recovery could be somewhat less difficult.) 

A.

Do you anticipate total tumor removal with a single operation? If not,what are my follow-up options? Surgery? Radiation? (This is important. Unless yours is an unusually complicated case, a single surgery to completely remove the tumor is the norm for the best AN surgeons. Unless there is a very good reason otherwise, one surgery is the only acceptable answer.) 

A.

What is the likelihood that my remaining hearing will be preserved after this surgery? (With Translab, it is zero. With Retrosigmoid and Middle Fossa, it is anywhere from 20% to 60%, depending on location, pre-existing level of hearing loss, and experience of the surgeon. Discuss the pros and cons of your situation, and the trade-offs relative to the side effects of each approach.) Google “acoustic neuroma surgical approaches.” 

A.

If hearing preservation is unlikely,will you honor my wishes not to cut the facial nerve under any circumstances, even if it means leaving a sliver of tumor behind? (The ramifications of cutting the facial nerve are substantial, leaving the AN side of your face, including your eye, essentially paralyzed. There are follow-up surgeries that can restore some mobility, but in my opinion you want to avoid having your facial nerve severed. Period. Unless your life depends on it.) Google “acoustic neuroma facial paralysis.” 

A.

In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop? 

A.

Given the approach you’ve recommended, what has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak, eye issues, and headaches? 

A.

        What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician. 

A.

How much discomfort should I expect from headaches and from the incision after surgery? 

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Does your hospital have a neurological intensive care unit?

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About how many days will I be in the hospital? 

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How often should I schedule follow-up MRI's after treatment? 

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Will I need follow-up care? 

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If you’re comfortable with the surgeon and the answers, get at least three references, preferably people of similar age, health, and with tumor size. 

A.

All other things being equal, when can the surgery be scheduled? 

A.

I have googled surgeries, scars and symptoms. I have joined forums and Facebook pages, hit up twitter and instagram - do as much as you can with out letting it stress you out.  Since I found out about this tumor it has consumed my life and while I try my best to not think about it every moment it reminds me that things might not happen again.  Like smiling in pictures, being able to ice skate without loosing my balance, running up and down the soccer field with my daughter and not get dizzy.  I have made light of this since I found out when telling people, but with my first appointment coming up it is starting to get to me and I swear I had an anxiety attack - my chest and ribs felt like something was squeezing them and it was so painful.  It is important to express your concerns and talk about how you are feeling to those closest to you, if you don't think you can talk to family or friends (maybe you feel they are annoyed with you) then talk to someone in a support group or on a Facebook page (shared one in an earlier post)