newly diagnosed - scheduling surgery

[jenichol]

Hello all.

I have been encouraged by reading all the posts on this forum.  I was diagnosed 2 weeks ago with 23mm×16mm right AN.  I am waiting to hear back from scheduler at UVA medical ctr. in Virginia.  I am going to have retrosig with Dr. Gregory Helm. 

I have been symptomatic for two years.  I am a physical therapist and began feeling unsteady, floaty and weird when working with my patients.  I had fullness in my right ear and thought I had an ear infection.  Was also getting buzzing in my ear and having difficulty hearing.  MRI at that time was unremarkable.  It was decided that I must be suffering sx of a closed head injury, as I had been head butted by my horse shortly before my sx began.  I took some time off work  and performed balance exercises.  When. I returned to worked I noticed I felt really bad on busier days.  I got progressively worse.  On 2-1-12,  I suffered sudden hearing loss in the right ear.  I did not improve with oral steroids or intratympanic injection.  Had another MRI that showed the AN.   Was relieved in a way to know I must wasn't crazy, although that may have been better.

I went through a period of deciding between gamma knife and surgery.  Now that I've decided to have surgery, I am trying to focus on getting past the surgery.  I find that if I think about the actual surgery, and try imagining myself in OR, it freaks me out.  So I'm trying think past the surgery to the recovery.  Knowing that others have traveled this road gives me great comfort and confidence that I can do it too.  I have a loving family, great kids, husband of 20 years and a great church family.  I know I will have a lot of support.  Having ya'll to talk to willreally help as well.  There is nothing like talking to others who have been, or are going through the same thing.  I appreciate any encouragement and prayer.

Jan

[alabamajane]

Jan,
Welcome and sorry to hear your story/experiences...
Yes, we have all been there,, glad you have made up your mind about treatment, that should be a great relief. Don't dwell too much on the surgery as you don't have any control over it anyway ,, put your trust in God and prayer and the Dr team you have chosen and all will be well.... Having a wonderful support system is crutial to getting through this experience successfully... and sounds like you have the best!
Our prayers and thoughts will and are with you as you complete your journey.. Jane

[jenichol]

Thanks so much Jane. I know I'll get through this, not because of me, but because of my faith in God, who I know loves me. My family and my friends and this site , I know, will be crucial. Thanks so much for your encouraging words. I'm getting ready to call To schedule the surgery . I'll let you know the date when I find out. Thanks so much again.  Please forgive my typing errors.  I am working off of a droid phone.  Jan

[Jim Scott]

Hi, Jan - and welcome ~

I'm sorry you are afflicted with an acoustic neuroma but glad you managed to discover the ANA website discussion forums.

Your AN is very small but as many small tumors do, it is obviously affecting your quality of life.  Because you've already made the decision to undergo surgery and have a team and a facility, I'll simply endorse your attitude of looking past the surgery and envisioning your recovery.  I did the same thing and it was very helpful.  My (Retro) 'debulking' surgery (on a 4.5 cm AN) went remarkably well and my recovery was relatively swift.  Later (planned) radiation was also without complications.  That was in 2006.  Today, I'm pretty much the same as I always was except for being deaf in one ear - which I've fully adjusted to.  Some cannot.  Fortunately, we have the BAHA.  My balance is not quite as good as it was prior to my AN manifesting itself with imbalance symptoms but hardly a problem (I can walk a straight line and don't need to use handrails on stairs). 

However, I was blessed to never experience any headaches or any facial nerve problems post-op and no CSF leaks, either.  Like you, I had solid support from my wife and (adult) son, my church family and of course, the folks on these ANA forums, who were very encouraging.  I'm proud to still be an active part of the forums and want to offer my personal welcome, good thoughts and certainly my prayers for you as you embark on this journey.   

Jim

[jenichol]

Thanks for the welcome and encouragement.  I sure hope I'll be able to report no complications with surgery.  Again I'm focusing on recovery whatever the outcome.  My physicians have told me this is a medim size tumor and believe that it has been growing fast.  That may account for the onslaught of sx I've experienced.  Whatever the case, I feel fortunate.to have treatment options available and I can still look forward to a fullfilling life.  All in all feeling blessed.
What a wonderful outlet-- ANA.  It appears that there are some real dedicated listeners and supporters here.  I hope that I will be able to provide support to others as they embark on this journey.  Thanks so much for being there.
Jan

[leapyrtwins]

Jan -

sending prayers and encouragement your way.

I had AN surgery almost 5 years ago.  My tumor was 1.5 cms at diagnosis and almost 3 cms when it was removed (approximately 6 weeks later).

I had a very good outcome - only lasting issue is SSD (single-sided deafness) and I opted for a BAHA so it's not much of an issue anymore.

Like Jim, I've never experienced headaches or had a CSF leak.  I had a very slight facial nerve problem immediately post op but a single dose of steroids cleared it up.

I recently had my 5 year post op MRI and it was clean.  WOO HOO!!!

There is life after surgery.  You'll get through this 

Best,

The Other Jan

[jenichol]

Hi other Jan!
Thanks for the encouraging words and prayers.  Hallelujah on your good MRI report!
With a fast growing tumor, did you have more rapidly progressing symptoms?  Did u you have another MRI before surgery or did they tell you how big had gotten after removing it?
Thanks for still being on this forum 5 yrs later.  It means a lot- shows how much you care about others.  What a great virtue.  I mean that to all who have stuck with this forum, to be there for those of us just starting out on this road.  I'm tearing up at the thought of people who don't even know me that are showing genuine concern.  There is so much more to learn from this that goes beyond the nature of a dumb ole tumor.  I understand how important knowledge of this condition is.  ANA has offered a wealth of information.  I must say, though, that LOVE is the greatest of all.  Thanks from the bottom of my heart.  You all help to make a heavy load lighter. 

Graciously

The newbie Jan

[KBL]

Hi Jan, I'm glad you found this wonderful group. 
My faith is what has gotten me through this journey!  Once I made my decision about my team I was able to relax and trust God.  I mostly felt bad that my husband was going to have to sit in a waiting room for hours while I had brain surgery.  Many people from our church came and kept him company.
You mentioned you have occasional dysphasia. I also had that problem.  It got worse for a couple days after surgery, then cleared up completely. 
If your church is like ours, you will have many people bringing you meals.  13 out of 18 were chicken meals!  LOL. It became a joke with us to see how our chicken would be prepared that night!  I was happy when chili showed up! 
I pray that you can relax in The Lord during this time.

Blessings, Karen

[CHD63]

Hi Jan .....

Adding my welcome to this exclusive group.     Your past two years sound almost identical to my experience ..... right down to initially a clean MRI, to the sudden hearing loss.

I, as well, experienced the rapid growth of my tumor so I had very little time in which to make a decision for treatment.

My church family and the church families of many friends were really the means by which I was so very calm on the days of my surgeries.  Many, many prayers resulted in great peace for me.

My prayer for you right now is that your surgery will be scheduled soon and that you will have peace and calm.

Thoughts and prayers.

Clarice

[jenichol]

Thanks Karen and Clarice.  My church family is already reaching out and offering meals and help with transportation for my kids.  A little about my family-  I have four of my own children and we have a foster son in our care currently.  My oldest daughter is 20 and is getting ready to graduate from UVA with her BS in biochemistry.   Her graduation is May 20th.  We are so proud of her.  We have homeschooled our kids and she started college at age 15.  She wants to go on to medical school after she serves a couple of years in the Airforce.  My son is 17 and finishing his Junior yr in HS. My next daughter is 15 and in HS. My youngest daughter is 13 and still homeschooled. Our foster son is 13 and in middle school.  His counselors do not feel he needs to be moved from our home with me going into surgery.  They think he is fine to stay with us.  He is a good kid and is well adjusted here with us.  I am so glad he will be able to stay.  My husband is very caring and will do anything for me.  I also feel bad that he will have sit and wait for me to come out surgery.  He has some good friends that I know will offer to be there for him.  I bet he'll spend most of that day in prayer.  Anyway,  my family is such a blessing.  The kids keep me going and really are a great deterrent from dwelling on my head.  They also are very understanding and cut me a lot of slack cause they know I don't feel that great sometimes.  They have been very helpful with chores.  We live on a small farm with a couple of horses, chickens and a bunch of other critters.  Tonight we have just come home from seeing the movie The Avengers.  Wow was is it loud and full of action.  My head is really buzzing and wonky.  Johnny, my son, drove which was a big help.  Well I guess I've bragged enough.  I love being a Mom and a wife.  The most favorite jobs I've ever had.  I must say that some good things have come from this trial. We all seem to be appreciating each other more.  We have grown closer and are better able to let the little stuff slide.  We're far from perfect, but I think we can see the "big" picture more clearly. 

Even so, there still is nothing like being able to share with others who know exactly how you're feeling.  My friends and family can empathize, but they can't completely understand what this feels like. 

With regards to the difficulty swallowing,  that sx has been only occasional but is a very scary feeling.  It's like all of the sudden the food or drink is not going anywhere.  My kids will say, "Oh no, we know that look on your face, you can't swallow can you Mom."

Thanks for "listening" y'all.

Jan

[leapyrtwins]

With a fast growing tumor, did you have more rapidly progressing symptoms?  Did u you have another MRI before surgery or did they tell you how big had gotten after removing it?

I noticed no change in my syptoms (diminished hearing and fullness in my ear) prior to surgery.

I didn't have another MRI pre-surgery because such a small amount of time had passed and because no one thought it would be an issue as ANs usually grow very slowly.

The increase in size was something my surgeons noticed when they were removing it.  My neurosurgeon said it doubled; my neurotologist said it "almost" doubled.

My neurotologist also told me I made an excellent choice (surgery) because he only radiates ANs (through GK) that are 3 cms or less.  He told me I wouldn't have been a candidate for radiation like we originally thought.

Jan

[Tod]

Jan, Welcome. I had my surgery two years ago at MCV/VCU. Best of luck with yours.  I still have difficulty with swallowing because of trauma to the nerve, but it is not severe at all. I'll be glad to share more if you need, but it looks like you have a handle on things so far.

-Tod

[jenichol]

Hi all,

Thanks for the responses back to my posts.   I talked with scheduling at UVA today and I am scheduled for 6-22-12.  Dr. Helm and Dr. Hakisaki will be doing my surgery.   I will consult with Dr. Hakisaki in early June.  He is the ENT. 

So now reality sets in.  Still I'm trying to think past the surgery to recovery, but it feels like a ticking clock inside of me now.  I like to work out and do things around my home.  My husband put down new flooring and panted the walls of our bedroom to make it clean and fresh.   It's kinda like wear gonna have a baby or something--preparing the home for me to recoop in.  However, I think having the babies will prove to have been easier than this.  I guess we'll try to get some other projects done.  We got our garden ready for planting this weekend.  We're a little late, but we'll put in already started vegetables.

I have also read that people recommend preparing for this surgery like an athletic event.  I am riding my stationary bike and elliptical and doing exercises 3-5 x/week.  I feel really drunk when I get off of the bike and the elliptical.  Does anybody else get more wonky with ex?  I also am getting more sharp pains in my ear and face just in front of my ear.  It makes me wince like a sharp jab.  My kids ask if I can feel the tumor.  I usually tell them,"No but I can hear it, like a bee hive in my head."  I guess the bees are starting to sting me now, so maybe I can feel it.  I actually know that these are all a result of the tumor pressing on the nerves not the actual tumor itself, but it makes it a little lighter subject to animate it.   Laughter is good medicine.  I hope I can keep it up.  The butterflies I felt in my stomach today when they told me the surgery date, make me wonder how I'm gonna be able to keep smiling as the day approaches.

Jan

[leapyrtwins]

Laughter IS good medicine - and so is a positive attitude.

Both will help you get through your AN Journey.

Keep the faith,

Jan

[KBL]

Hi Jan,
The time from when I found out I had my tumor until my surgery was just over 2 weeks, so I did not do any ex.  My prep was getting the house ready and buying stuff I thought I would need, as well as a lot of Dr. Appointments.  For me getting ready meant trying it gain some weight because I knew I would drop a bunch of weight.  Given my height and usual weight, I am at a good weight.  Sure enough, I dropped about 17 pounds.  My journey was different, I spent 4 nights in ICU, then went to the hospital rehab floor for 9 nights.  The rehab floor is new and was an outstanding experience.  One of my biggest worries before surgery was the pain I would have later.  I was lucky, I never had headaches, or vomiting post surgery.
I was happy when I was in rehab, so much so that they sent a Psychiatrist in to talk to me!  They didn't think I was dealing with reality.  I was just happy to be doing as great as I was!  I had not gone on line to read all of the things there are to worry about with AN surgery, so I was happy my cognitive abilities were good, and that I was alive in spite if having a tennis ball size tumor!
After about a week there I found the thing I most wanted was a soft blankie!  So someone went to Target and got me a queen size blanket that feels like a baby blanket, complete with satin trim!  That little thing made a huge difference to my comfort level.
Prayer is what sustained me, and continues to sustain me.
your faith will sustain you too.
Blessings, Karen