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Thursday, December 8, 2016

Surgery Day

October 26, 2016

5:30 to 6:30 - I went to my daughters soccer practice for the last time that season as her coach.

7:00 - I stopped eating and drinking anything . My mother in law brought over my "last meal" and we all sat on the deck eating our pounds and pounds of pasta!

7:00 to 11 I packed my bags, packed the girls bags for their sleep overs and packed an overnight bag for my husband.

11:00 I showered and I had my husband help sterilize me using the hospital issued wipes, put on some pajamas and claimed into my bed with it's freshly cleaned sheets.

I honestly didn't think I would sleep that night, similar to the night before leaving for a trip - I thought I would be up all night double checking my brain to make sure I hadn't forgotten anything (kids schedules, packed bag, medical documents, etc.).  HA - I was wrong, maybe the knowledge of knowing that surgery day was finally here gave me a sense of peace that calmed me enough to relax and get a wonderful nights sleep. I only woke up one time to find out kitten had claimed up in our bed, I thought our door was shut, I mean I was sterilized and he is not so therefore he was not supposed to be by me...I kinda freaked out and shoved him away as best as I could but not before he dug his claws in me leaving me with deep painful scratches.  It wasn't his fault he is used to sleeping next to me, the poor guy was just trying to hold on LOL.


October 27, 2016

4:30 am - Wake up time.  My husband showered and then sterilized me once again I put on my nice clean clothes and my positive attitude shirt, my husband packed the car up and I gave my girls kisses good by and told my animals good bye too.







5:00 am - We arrived half an hour early to the hospital and headed to the third floor (Radiology) to do the last of the checking in process.  They didn't make us wait, they got started right away matter of fact I only sat in the waiting room for about 10 minutes before the nurse came to retrieve me for pre op prep.  I was a little bummed that my husband had to wait in the waiting room because I wanted him by my side the entire time right up until they wheeled me back but that just wasn't an option.







To start off I got a groovy yellow plaid gown and some awesome duck socks.  I of course had no jewelry on except a yellow string on my right wrist, it was a bracelet my daughter made me.  I knew they would cut it off anyway so figured I would wear it as long as possible.


The nurse now had to put an IV into my dehydrated veins and lets just say it wasn't easy...needles don't bother me at all so when  he said he would get it on the first try and couldn't it didn't worry me any, I knew it would be an issue because I had not had anything to drink since 7pm the night before.  They were having a hard time finding a good vein and used this awesome machine that illuminated my veins to help them locate the best one.  Once my IV's (yes two) were put in they brought my husband back.


About 5 minutes after he got back there they wheeled me off to get a pre op MRI, when leaving the MRI my neurosurgeon came and had a chat with me (apparently he had been trying to hunt me down so we could talk before surgery) he explained he wouldn't be in the room for the first hour or so while the neurologist began opening up my skull as he was headed to a meeting, he asked if my "nurse advocate" friend was going to be around today (I will tell that story later) and I said yes she would be..he smiled and said I look forward to seeing her, then he said I will see you later on he squeezed my hand and off he went! Headed back to my room and meet the anethisiologist who was amazing (I really lucked out).   I didn't spend too much time back in pre op with my husband and I really don't remember even kissing him goodbye because of the "relaxation" medicine they gave me.


Fast Forward - not sure what went down for the next 8ish hours but apparently they opened my skull removed most of my tumor and stitched me up.

POST OP

As the doctors told my husband I woke up talking and cracking jokes and didn't shut up for almost 2 hours in the post op recovery area.  I did great with the anesthesia and had no issues, I remember talking with the nurse in charge of watching me while I came to fully and he and I chatted and I was good, felt happy was smiling and even (hate to admit I did this) laughing because the guy across from me thought he was going to pee his pants not realizing he had a catheter...I said to the nurse "man what did that guy do just have a baby" the nurse said hope not he is a dude.  I think he realized then I wasn't fully "back to normal".  BOOM all of sudden I got really upset, I realized my husband wasn't there and I start begging my nurse to go get my husband...the poor guy is doing his best to tell me he can't come back yet but I just won't let up.  The nurse tells me to give him a minute and he manages to bring my husband in for about 5 minutes before I was taken back for a CT scan.  When they rolled me into the CT scan they said I need to move to the table, well my entire left arm was completely dead, not matter how hard I tried I just could not move it.....based on the looks of some faces in the room this was a bit of a concern (stroke is a possible side effect and I was experiencing a symptom)  They were able to move me with no help of mine to the table and back off.

I headed to ICU and a few hours later my arm was just fine, they narrowed it down to positioning during surgery.  Patricia was of my first nurses and she set the bar high...it never got lowered!!!

So now I begin to process of recovery......my hospital stay would go on to last 7 days more of those details in my next blog.

Saturday, November 26, 2016

The HARDEST part (for me)

I can't get over how hard this has been.



I really thought things would have gone a little easier but at the same time I know I am blessed that things went as well as they did.  Physically I am on track and maybe even ahead of schedule.  Emotionally who different ballgame.


I just want to say there have been days that I was so depressed I didn't want to wake up and so I stayed in bed, I didn't do anything but lay there for three days.


I needed someone to physically get me up and at it. So my game plan was to make plans with someone knowing I don't usually cancel and figured that would be my saving grace.  My body had a whole game plan of it's own and I really got so bad I even cancelled a coffee date with one of my favorite people during my three day stint in my bed.






People think that I get exhausted because I am healing - - - I mean I did have major surgery even if it doesn't feel that way to me, and yes loud noises make me so dizzy that it wears me out.  For me what wears me out the most has been the depression.  I have battled depression for a long while so it may just be specific to me and my case but just know those days that you don't want to wake up or question your reason for being here are days that someone else may be feeling the same way so try and reach out and be honest with how you feel and what you are going through.  It is OK to admit to feeling weak and to not being as tough as you think you should be. The key is to make sure and let people know how you feel.

This next part might be too much for some of you to accept but I want you to know I have a very brave and strong advocate that I can reach out to anytime I need to talk who is unbiased and has never made me feel weird for being depressed or accused me of just wanting attention (which by the way is the quickest way to make a depressed person streamline to not wanting to live even quicker)

I sat awake one night and started making a list of reasons why I should live and why I shouldn't.  It was all verbal and I didn't write it down but I actually got to a point of feeling so down that I found it necessary to make that list, all during a time when I should be making shopping list for my daughters Christmas.  I accept some people don't understand depression and call people cowards for taking the route none of us want to see someone take. BUT do not ever judge someone who is constantly judging themselves instead send them positive thoughts vibes and words even if it sounds repetitive it is helpful.




I know I can make it through this and as mentioned in a previous post this IS what I am going through and I do know there are people going through their own journey that might make mine seem so minuscule just don't diminish what I am going through because my story is the only story I can try to right the ending for and the only story that has chapters I can learn from.





Reach out to me, know I am fragile, know I desire human interaction, know I will mend.

Thank you to all who have been there for me.  October 27, 2016 seems so far away and the reality is I have a long way to go.

On days you feel weak reach out to the support group you joined on Facebook or reach out to me, I am much better at the whole "do as I say not as I do" mantra.


Stick around, I still have the journey of POST OP to share, those will be motivating because not everyone losses everything in these surgeries.




Wednesday, October 26, 2016

Can I have a meltdown please?

Tomorrow is officially the day of my surgery.

It is currently 12:30 AM Wednesday October 26, 2016.  I will be having life altering surgery and by this time tomorrow will be in some sort of over drugged, possibly painful aftermath of a long surgery to ultimately take away the hearing in my left ear, cause dizziness, possible facial paralysis, and headaches.  WTF am I doing again???  I don't mean to sound like I am regretting my decision or that I even found out about this tumor but HOW ON EARTH do people not freak out a little about this?

I swear I have gone through the stages of grief over the past month and let me tell you, I am very ready to be off this rollercoaster ride but a little weary of how I am going to feel once it is done.

This post may be a little all over the place but honestly that is somewhat how I am feeling right now.
I keep calling this situation my journey and have addressed it head on.  I feel informed, comfortable and ready.  I also feel scared, misunderstood and sad.  I think I am prepared - I have my kids taken care of, my house is clean an scrubbed from top to bottom I am almost packed for the hospital and feel as though I enjoyed my time before being tied up with the whole healing process for the next month or so.  I also have felt love, disappointment and encouragement since getting diagnosed.

If you know the T.V. show FRIENDS you might remember the episode titled "The One with the Memorial Service" well it is kinda how I felt a couple of times.  Now, not this week but the weeks prior.

Time out - cry break....

I wanted the last couple of weeks to be awesome and fun and entertaining and memorable...I know some people may not understand what I am going through but I do know there are people who know exactly what I am going through which gives me some comfort in not having to explain my feelings or why I felt so alone during the last couple of weeks.  I had some wonderful moments especially this week but I had some really crappy days where I wished and prayed someone would knock on my door for an impromptu visit to just say hi and see how I was doing.  I had plans I had to break because I didn't feel good, I canceled plans because I thought I didn't feel good but really I was just depressed and wasn't feeling up to doing anything.  I understand I am not a priority to everyone but I really needed the extra credit love this month and unfortunately I just didn't feel it (yes I am depressed and yes I realize that is why, but I just need to say it so that I can release the negative)  as much as I guess I was hoping.  I had some really valuable moments and just the thought of those moments brings joyful tears to my eyes because they were not over the top moments but rather quality moments, sipping hot cider and chatting for a few hours, laughing so hard I swore my head would pop off playing games, sitting at a fire in the mountains, drives in the mountains, meals with friends, getting gifts in the mail and a few extra moments in between.  I don't always want people to know how I feel because I HATE to be judged and think that is bound to happen, I don't want to be looked at as selfish I just want to be recognized as someone who is hurting.  I don't want to be looked at as unappreciative, I just want people to know I struggle with worth.

I just want this to all be over with so that I can go back to being my normal self, the self that wakes up goes to work comes home coaches soccer and loves my family.

I cried one time though all of this only once before this post - I cried because I felt guilty for leaving work and causing stress on a person I really like and look at as friend and because I didn't think people would even notice I was gone...seriously how stupid stupid stupid is that I mean what am I, a 16 year old girl who didn't get asked to prom??? No I am a women who knows what she wants, says it and sticks up for people who deserve it.

Sorry, I am finished and will hopefully get a few hours of sleep before driving my beautiful friend to the airport at 5:30 AM (She was my saving grace this week!!)

Sunday, October 16, 2016

Breathe.....Just Breathe

I finally realized I needed to do something, something different.

As long as I have struggled with headaches I have always had my go to pain medication and techniques to "fix" my headache and make it bearable. That's right to make it bearable, not make it stop, not prevent it from happening but to just deal with it.  So, when I finally saw a neurologist that said he could help me become headache free and medication free I immediately thought WOO HOO!!!!! This is going to be amazing and I can't even begin to fathom how great I am going to feel!

Then boom, Arnold had to come into my life, little did I know it had been stalking me and that it would be just a matter of time before it would cross my path and I would come face to face with it.
Well my plans to be headache and medication free went out the window with my introduction to Arnold.

So now here I was teased with a solution only to have it ripped away with the now pending pain and headaches from having brain surgery to remove a tumor.  What the heck was I supposed to do now, I am on a strict pain management system that I can't detour from, it consists of three medications.

My daily medication is an antidepressant that is supposed to help manage my headaches. It is supposed to decrease the severity and the duration. 

The second medication I take is an "as needed" pill called rizatriptan. I am only allowed to take a max of two pills a day and up to 4 pills within a week.  What that means is when I meet the max I can't take it anymore until it has been 7 days since my last dose.

My third medication cambia is also "as needed" and I can take it in correlation with the rizatriptan, once I have met my max dose I can take the cambia instead with the same limitations of 2 times a day with a max of 4 times a week.

Once I meet my max that is it, can't take anything else, to explain - the reason for multiple meds and a limited dose is to prevent pain medication dependency.

 I would say it does help but my neurologist said we need a few months to establish a pattern and because of my upcoming surgery I will have to basically start over.  He also said the narcotics I may be administered are not good for migraines but will be necessary for managing my pain from surgery, so basically I am between a rock and a hard place. 

This all makes me nervous obviously because I don't want headaches I despise headaches, my husband my kids they despise my headaches, headaches suck.  Sorry, I just hate them.. A LOT.

Anyway, so back to breathing.  I wanted to find ways to calm down and control my anxiety as well as lower my hospital induced high blood pressure so I asked those close to me for advice on what they use to help keep their blood pressure low figuring it would help with the rest of my craziness too.  
I was provided with a lot of suggestions from lowering my sodium intake to meditation.  The meditation option sang a song of joy to me and my friend sent me a link to a video on YouTube 

The video was so calming and it lead me to even more videos (similar to watching a cat video and then realizing it has been three hours and now you are watching videos of cute donkeys playing soccer)  I was lost in relaxation.  I had just gone three days with severe headaches and no relief from my medication so when I fell asleep listening to a meditation video and woke up without a headache and really felt amazing it was such an awesome feeling.  I have gone to bed every night since listening to a meditation video on YouTube and I sleep so well, I wake up rested and full of energy.



Now, I am pretty open minded and I know that not everyone is, so before you think meditation is fluffy and out there if you are really struggling with stress, anxiety or discomfort just try it once, just one time and see if it makes a positive change in your situation.  It doesn't matter if your situation is a brain tumor or an upcoming exam, stress is stress and comes along for many different reasons on many different levels.



There are so many videos that it may become overwhelming when you search but the ones in this blog are my favorites, I also included a version for hearing impaired that has some great reviews. I do have to warn you......these videos make you fall asleep so fast, if you just give into the prompts and allow yourself to relax :)

Thursday, October 13, 2016

My little girls

My daughters were the first people I told.
                                                       
Henry Doorly Zoo - water park

Yes, there is a water park in the zoo!!
When I first found out about my tumor I immediately thought about my kids and my husband - I of course told him as soon as I got off the phone with the ENT and he was upset (I could tell even though he was pretending pretty well).  He and I discussed talking to the girls and he thought we should wait until I had more details.  Seemed like that was a good plan, but I just don't like to keep things from them, I can barely keep their Christmas presents a secret!

The day I found out was the same day I had a surprise trip planned for a girls trip to go to Omaha...if you have never been to Henry Doorly Zoo in Omaha, NE I highly recommend you go it was amazing!! It was one of the best mom and daughter trips we have ever had! We stayed in a hotel, went swimming, had breakfast in bed, did a riverboat cruise on the Missouri River and even surprised my youngest with a visit to see her best friend.  It truly was an amazing weekend!

I choose to tell them as we were headed home, I didn't want to have them thinking about it the entire time we were there but  I wanted to be able to tell them without any distractions and ample time to discuss it with both of them.

They are well aware I have suffered from headaches so it was the perfect way to bring it up to them. I talked about how I had gone to see a doctor because of the headaches I was getting and that after the MRI they did they found a brain tumor.........a little back story is that they have been through having to understand tumors so it wasn't a new thing for them.  Their cousin had a brain tumor removed when he was 4 years old called Juvenile Pilocytic Astrocytoma and he did amazing literally had emergency brain surgery and was home less than four days later HE WAS AWESOME!!  Fast forward to 2015 and my 18 year old cousin goes in for an x-ray due to pneumonia and finds out she has a mass in her chest and was diagnosed with a tumor called Ganglioneuroma.  Both of their tumors were benign and while my nephews tumor was also a brain tumor it was completely different "genetically", my cousins tumor was in a different location but more similar being as her tumor also grew from schwann cells and while there is also no known reason that it began, there is a genetic condition called Neurofibromatosis type 1 that can cause the growth of these tumors.  The genetic condition for acoustic neuroma / vestibular schwannoma is Neurofibromatosis type 2.

My girls of course had questions regarding surgery, scars, compared me to my nephew and then they seemed to back off and not really want to talk about it much more.  I had to respect that and try my best to put on a strong front to avoid making it a bigger issue than they needed to be aware of.  I would not hide it from them though, I still did my research when they were around, they watched surgeries with me and looked at scars with me and eventually they got fed up.  At one point my oldest (10 year old) straight up said "Mom, do we have to keep talking about your tumor and looking things up?" I told her I was going to continue doing research because it was helpful for me but she didn't need to watch or look at the computer while I was doing my research.  She also told me she didn't want to visit me in the hospital, I knew this was out of fear of going to a hospital and had nothing to do with her not wanting to see me so I said it was her choice but at some point I would be missing her.  I also told her I would still talk about it but that her and I didn't need to discuss it, she was content with that answer and it worked great.  My youngest (7 years old) played along with her sister and had similar feelings.

At one point I realized that maybe I was doing "too good" a job in being strong and not making a big deal out of it, that moment happened when I was getting ready to go to a simple doctors appointment and my 10 year old said " So mom what time is your surgery and when will you be home?" I literally laughed out loud and reminded her that this was just a doctors appointment and surgery wasn't scheduled just yet. I began to realize they didn't know their mom could possibly be in the hospital for up to 5 days or that my surgery would last 8 plus hours so I started thinking of ways to tell them those details without making their little wondering brains come up with crazy situations that were far fetched or unrealistic.

That opportunity came around at just the right time!  I was talking with my friend and we began discussing Halloween, by this point I knew me taking the girls wasn't going to be an option so she was offering to take them for me (my husband has to work Halloween night and can't take them either).  It was the perfect opportunity to talk about it.  I told the girls they get to go trick or treating with her and they were excited, I then said now she is taking you because I can't go since I will have just had my surgery....the wide eyes and questioning looks then glared back at me, I said I could still be in the hospital, that then began the discussion of how long and how many.  It was the best way to get that part of the discussion taken care of and the last piece of the puzzle for them!

I have them all taken care of while I will be in the hospital, certain friends assigned to certain days and certain activities. They have been amazing little girls and have been a tad more helpful around the house when they notice I am having a hard day and yet they still manage to be their crabby little selves and talk back and whine at all the right moments :) but overall their support has been wonderful, the extra three hugs every morning and the multiple kisses goodnight can never be enough.


Our other mom daughter trip to Bear Lake in Utah!

My daughters are special and they are my stars and my moon.

Wednesday, October 12, 2016

Volleyballs and Bubbles

I need to write because it helps me to express how I feel without having to hold it all inside and EXPLODE one day.  I am not doing good at the moment.  I am just having a difficult time trying to pretend I am doing good.  I realized this the other day while I was laughing so hard I was crying and when I calmed down it dawned on me that I just went 5 minutes without thinking about my tumor, wasn't worried about my recovery, I didn't have a running list in my head of things I want done or need to plan for.  The stupid thing in my head, the thing I have so "lovingly" named Arnold whom I am very ready to evict.

People have said to me quite often these words "well at least it isn't cancer" - OF COURSE that is one of the biggest blessing in this whole situation but what is in my head is still not supposed to be there and by finding it I now have to have a major surgery with real deal complications that can permanently change my quality of life.  I have no idea how I am supposed to accept what I am going through is difficult when there is always going to be the comparison.  Now maybe someone says something like that to try and cheer me up, and if that is the case then I am being a jackass for not wanting to hear it?  Of course I would be which is why I would never say anything more than "yes, I am so thankful it isn't cancer".  Even typing that I have that feeling sometimes makes me anxious but I know I am not the only person who feels this way and I want those people to know it is a difficult thing to have cross your mind.

When you have a brain tumor typically you are going to tell people what is going on and when that happens there are a few different types of people you may encounter.
 1.  Let me know if there is anything I can do (gives a specific offer i.e. I love to cook or let me take the kids after school), these people would actually make you dinner if you gained the courage to actually ask for help so do so because this will make them feel good which in turn will help you out. 
2. Let us know what we can do (notice they don't offer it themselves but make it more generic) these people will maybe give you a hug, and they may ask how you are doing but it will be in the hallway as they walk by, not stop by your desk or even send an email.
3. I am so sorry to hear this, I hope you get better soon (no offer to help if needed but genuine concern to heal), these people may want to help but might not have a single clue as to what they can do.  Don't put them out or expect anything from them, just remember them in the moments you feel alone and know that they are there for you if maybe you want to chat or just go get a coffee. These people would be perfect to have around to discuss anything but your tumor which is healthy and necessary so utilize it.

I have become lonely, I know it sounds strange but I have and because those around me don't really understand how I feel each day or that I am depressed because of this path I was forced to take it makes me feel alone.  I am thankful I have the online support group but those people who have gone through this or are going through this aren't available to just drop in for a visit or invite me to lunch, they are there at the drop of a dime to let me post my concerns and questions or to just vent but I need a lot of hugs and human interaction therapy.

My friend told me to think about the things that cause me stress and put them in a bubble and let them float away....she also said I could put them in a volleyball and smash them away as well, it really all depends on the mood I am in.  I love that she gave that suggestion to me because I know it works especially if she is the one telling it to me...she has been through hell the past few years and she is a damn rockstar and inspires people around her all the time, she is living proof that a positive attitude truly gets you far.

Now I just need to remember to be positive....

Diffuser necklace from my sister
t-shirt from my mom




PS - REMEMBER THE FEELING WHEN YOU ARE IN A LOW PLACE AND NEXT TIME SOMEONE YOU CARE ABOUT SEEMS IN THE SAME PLACE SPREAD THE POSITIVE.


Friday, October 7, 2016

Last day

Today was my last day at work.

While most people take time off work and have great feelings of joy and excitement, that unfortunately is not the same for me.....this time.  A few months ago I took time off work for a week at the lake with my family and it ended too quickly and I came back to work with a really nice tan.  This time around though a scar not a nice tan.

I was ready to leave work mostly because it was wearing me out having to focus on my job when my brain wanted to focus on what it was going through instead, rather selfish if you ask me.  I was ready to work on my self and prepare for surgery, spend some extra time with my kids and husband.  Ready to have lunch with friends and stay up late, without having to wake up in the morning and rush into work.   The problem is I am not ready for changes that I have no choice but to make.  I didn't choose to take work off until the end of January, I didn't choose to have a tumor that would cause me to go deaf.

love my work family
I was so sad to leave the office today, it was even harder to leave yesterday while most of my coworkers were there, today was a day when limited people are in the office so it was a little easier to walk out and to get things wrapped up.  This week I was treated to multiple coffee dates, lunch with friends every day and my dear friend at work made my last day a memorable one with flowers and bagels for breakfast followed by Sexy Pizza for lunch.  I received a wonderful fruit bouquet and a sweet gift from my boss along with plenty of emails wishing me the best and making me feel loved beyond belief.  My husband and I are even going to enjoy a three day get away at a cabin in the mountains courtesy of another coworker.  All the hugs and visits to my desk truly made it a good day.



There is always a flip side to everything though right?  All the kinds and love was yet again another reminder of what was happening and the forced change that was present.

Now let me point out that my surgery isn't scheduled until October 25th but I had an excessive amount of vacation to use and the necessity to clear my head.  I am thankful that I have a job at a company who cares so much for their employees.  I can't imagine going through this without their support in addition to the many friends and family so close by.  I am thankful I have the option to take time off before my surgery and to not have the stress of being out of work financially while I recover.

Most people know the saying "it could always be worse" and while I do agree with that we all need to remember that my worst is someone's "it could always be worse" - what I mean by this is that you can't always take solace in someone else's misery you need to accept that you are going through something tough and it is OK to accept help and admit that it isn't easy.  Never down play what you are going through because it is your own story and there is nothing worse than forgetting that.

I love people and being at my job allows me to be engaged with people I admire and look up to.  I am afraid of how lonely I will be get while I go through this, I thrive on people time and while my husband and my kids provide a whole other level of engagement they don't provide the level of interaction I receive from my coworkers.

I know my time away from the office will be long and that it will take time to adjust when I get back but I am already looking forward to getting back to normal albeit half deaf and a new scar.




Friday, September 30, 2016

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!




Wednesday, September 28, 2016

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


Tuesday, September 27, 2016

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.




Sunday, September 25, 2016

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.

Friday, September 23, 2016

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.

Wednesday, September 21, 2016

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!