Audiologist with 4mm AN, new to ANA and posting!

[catie123]

Hi!  I was diagnosed last year with purely balance issues being my only complaint.    After years of doing ENG's, ABR's, hearing evals, EcOGS, rotary chair testing and posturography on hundreds of patients I did not notice the symptoms of the AN in myself.  I thought I had high blood pressure with the grocery store and the mall being my triggers for stress thus making my blood pressure rise and the lightheaded feeling occur.  After mentioning the "lightheadedness" to my primary care he thought I had MS and sent me to a neurologist.  That was when they found the AN.  My symptoms are increasing in severity, but again all balance related in nature.   

Anyway, the AN is sitting on the top of the nerve at the entry of the left IAC. I have consulted with an otoneurologist, neurosurgeon and Dr. Brackmann at House.  The local otoneurologist and neurosurgeon who work as a team recommended I wait and see.  Dr. Brackmann said why wait, you are young, healthy and it is small with no hearing or facial nerve involvement, take it out! I am scheduled for removal with Dr. Brackmann at House in August.  My hearing is normal and the Dr. gives good odds (75%)  it will remain that way with no facial nerve involvement! 

My question is regarding recovery times.  I have two elementary age children and will be itching to get back on track as soon as possible. (Yes, by the way I do think I am Superman or mom as the case may be! )  I am giving myself most of the month of August to get back on my feet.  I live in the D.C. area and my kids start school the 28th of August.  I have been getting some good info from Dr. Brackmann's office but wanted to see what you guys had to say. 

I appreciate your time and comments (even if you think I am crazy for getting a 4mm AN removed!)

Thanks!  Gina

[Jeanlea]

Welcome, Gina.  This is a great place to gather information.  I'm sure there are many people with small ANs that will be sharing their experiences with you.  I had a 3.5 cm tumor removed last September.  After 8 weeks I was back teaching school.  My own children were very good through this whole process.  After a month I was at the home cross-country meets to watch my sons run.  Just be prepared to rest a lot in the beginning.  Everyone's recovery is different.

Jean

[Obita]

Hi Gina:

I was back to work in two months also.  If the kids are old enough to take care of themselves (getting breakfast etc..) you will all be fine.  You won't be able to lift anything so they can help you.  The post-op fatigue is probably the biggest suprise of all.  Taking naps when you get tuckered out will help you recover quicker so take lots of them.

Best of luck to you,  Kathy

[Battyp]

Gina it's your body so no one thinks your crazy for getting it out while it's small.  Why wait until you become real symptomatic?  I agree with everyone else you'll be real tired for a bit.  Can the kids fend for themself?  I know with my son I when he was little I'd put the cereal in the bowl the night before with wrap over it and leave some milk in a small container to pour himself.  Or cereal bars.  You'll find ways to adapt.  Driving was a challenge for me for about 6 mos but other people not as long.  When do you plan on your surgery? 

M

[Kathleen_Mc]

Gina: I don't think you're crazy for having surgery now, how I wish my first tumor had been found in such a small state. I had a very small regrowth removed this past fall and the recovery was so simple compaired to the initial surgery I had. I can't say how long you might need to be off work but my husband went back to work a month after this recent surgery I had and I was left with the two children (6 and 3 at the time). Some days I was too tired to cope with my daughter and she had some days of day care so I could rest. I would suggest your spouce have some time home with you until you feel ok to be on your own for the time they'll be at work (or maybe there's another relative that can help out).
Kathleen

[Captain Deb]

Gina,
I unfortunately am not one of the people who will say you are not crazy for wanting surgery for a 4mm AN. This surgery has devastated my life as I knew it.  I've been one of the unfortunate ones to have been left with a "permanent headache" which flares up regularly into a 10K (Kip scale, google it) and left me living on painkillers with thousands of dollars of doctor bills, medication expenses, and no disability from the gov't. It has triggered a domino effect of health problems for me--ulcers, severe tendonitis from knitting and painting on pain meds, dental problems. I go from second-guessing my decision to second-guessing my decision almost daily and I'm usually a pretty cheery person as most of this forum knows.  Right now, today, I wish I had been more interested in radiosurgery for may relatively small AN and I went to one of the best facilities in the country for my surgery, so I don't fault unskilled treatment.
Just thought you needed to hear the downside of this one as well.
Good luck with your decision.
Capt Deb

[russ]

Hi Gina

  My personal feeling is a Middle Fossa approach by Dr Brackman and w/o complications and you 'may' be able to care for your children in as little as 3 1/2 weeks to a month. Maybe 4 - 6 weeks as you describe symptoms which indicate the AN arises from the vestibular nerve as 80% of Vestibular Schwannomas do. Is the AN in the inferior or superior end of the IAC?
  Yes; There 'may' be some fatigue but I think it will be manageable.
  I agree with your choice for Tx now. Why wait until there are auditory and facial nerve complications?
  Best wishes in all ways!!

  Russ

[littlemissrory]

Hi Gina!
Reading your post was like looking back two years to my own experience.  I had an 8mm left sided An removed May 2004 after being diagnosed 6 weeks before that.  ALL my syptoms were balance related, and they progressively got worse beginning in January of that year.  I am extremely active, healthy and knew I wanted it out...as did the docs I chose.  I gave my neurotologist one month from when I got home to being back in my kayak (I'm a whitewater kayaker)...we pulled it off.  We scheduled the surgery so quick since I was working as a full time ski racing coach and I needed to be on the hill by November.  I was, and I had no problems skiing.  I/Dr Mangham chose Retrosigmoid.  No hearing loss, no facial paralysis and he saved my balance nerve.  My MRI this February showed all is well.  I do get bouts of dizziness, and a year later started with the strange visual issues I had before, but otherwise doing great.  I started sailing and will be racing J24's this summer.  Life is great and POSITIVE attitude EVERYTHING!  You sound like you have it together and I wish you the best in a full and speedy recovery!  Check out some of the past posts such as what to have at home after surgery...that is a great help. 
Cheers,
Rory

[nipanddale]

Hi Gina,
Dale here. Just three weeks ago, my wife and I found out I have a 3.5 cm. AN on the left side; becuse my tumor is quite large, radio-therapy or watching the tumor is no longer an option. A 4mm tumor, in comparison to the sizes of those I've read on this board, is quite small. Nevertheless, it's still a tumor, and like battyprincess said, it's your body.

I have not yet gone through surgery (sometime before the end of June-- they docs are shuffling schedules now). One of the things I've noticed reading AN websites, and considering the many side effects the wonderful folks in this forum have described, I acknowledge the validity of Capt Deb's statement-- a "wait-and-see" approach may be the way to go. People are all unique, and the outcomes of our experiences are the result of our responses to them. If you and your doctor feel that surgery is the way to go, and have discussed the possibilities, then that is the right decision.

So, no, you aren't crazy, just human! (What is crazy, anyhow? Who's to say?)

This is a great discussion board with awesome people! Without the inspiration of these folks, and my wonderful wife. nip, who is taking care of me, scheduling appointments, doing research, rearranging her summer, etc., I would probably have had an emotional meltdown by now! So stay tuned, Gina! This is a great site to alleviate fears, get realty-checks, and get info to formulate questions for your doctor.

Example: I teach middle school, and had to take my students on a trip to Cedar Point yesterday (a big amusement park in northern Ohio). Battyprincess was kind enough to shoot me an e-mail warning me to stay off of roller coasters- as they can be fatal if the AN is on/near/in the brain stem. After that, I asked my neurologist Dr. Piper about it, and he kicked it up a notch and told me to stay off the merry-go-round, or any other ride, for that matter. This is a very helpful, friendly group!

Dale

[ppearl214]

Hi Gina and welcome! What a thought to have a hearing professional now part of our exclusive club!  You are truly in amazing shoes to have access to some of the finest professionals and maybe... just maybe... we can post questions back to you for what we go through, if you are game.

As you know, your AN is rather small in comparison to many.  Typically, most AN drs will note that "if you are not symptomatic, watch and wait... if you are symptomatic, then time for treatment."  Like you, mine was rather small in comparison upon first diagnosis (at time of diagnosis, it was 5mmx7mm but mine steadily grew in less than a year).  Your options are there for you (radio-surgery vs. microsurgery). Many have the mindset of "if it doesn't belong, get rid of it" vs. "go non-invasive vs. invasive first".  For me, I was of the latter decision.

As you can see here, many that have had microsurgery have done well or not so well. There is a vast array of situations with microsurgery patients here and endless threads about outcomes for both, microsurgery vs. radiosurgery. There are many still in "wait and watch" mode.

You know what is best for you and your situation.  You know what is best for you and your lifestyle. With 2 little ones at home, I can only imagine all you have to work out.

Being in DC, you have access to some of the best care on the east coast.  As with any form of surgery, you know there is extensive recovery times involved.  With any form of AN treatments, there are many potential outcomes/risks.  I have had surgeries in the past for other ailments but from an AN standpoint, I can attest to being back at work one week post treatment and doing fantastic!

Those that have posted on this thread give wonderful "heads up" on their situations. My hope is that you can absorb all of the info without having your head swim with your diagnosis being recent.  I'm not going to chime one way or another, but know that there are many options and please take your time in researching all options and the best AN treatment centers/professionals available to you.

Regardless of what you decide to do, take a deep breath, weigh out everything and we're here for hugs if you need them.

Hang in there....we're cheering you on.
Phyllis

[dowdog]

Gina,
I too, have been recently diagnosed.  My AN is born on the upper vestibular nerve and pressing on my hearing nerve.  Constant tinnitus, 30% hearing loss, and balance issues are my symptoms.  All are irritating but manageable so far.  I have learned through this website and others that these are slow growing benign tumors.  You have a very small neuroma so all three of the classis AN treatment options are open to you.  I have read somewhere that 40% of diagnosed AN's don't grow at all after diagnosis.  Others grow but at a very slow pace.  A very small % grow faster than normal. 
So if you are looking at the odds, odds are that your small neuroma will stay small for a few years at least.  At an average growth rate of 2mm per year on the high side you would still have a small schwannoma after 3 or 4 years. 
In my case I feel that given my current symptoms, the risk of negative outcomes from either microsurgery or srs is not worth taking.  The worst that could happen by watching and waiting is total hearing loss on the affected side, symptoms increasing, and tumor growth.  For me, if I see growth of >2mm in a year, I am going to move to the next level of treatment which is GK or CK or FSR.  The best scenario is, it doesn't get any worse than it already is. 

[catie123]

THANKS to everyone who responded to my initial email in June.  I had my surgery with Dr. Brackmann on Aug. 3rd, returned home to the DC area on the 12th (I was given a clean bill of health on the 10th).  Surgery went great.  I have no facial nerve involvement. My hearing is down slightly but I still have some fluid in my middle ear and swelling.  I have virtually no pain in my head and am not on any medication.
The vestibular nerve had to be cut so my balance has not come back fully yet, but am walking really well.  I am thrilled that I made the decision to go have Drs Brackmann and Hitzelberger do the surgery now!!

Thanks!

[Obita]

Way to go Catie123!!  I am so very glad for you.  Your balance will be fine with time, patience and hard work.

You will feel like a million bucks when that swelling goes away.  I only had the big head feeling for a month or so.

Congrats on being a Postie.  Kathy

[Battyp]

Catie glad to hear things worked out so well!
May you continue on a speedy recovery!!

[cookiesecond]

Catie,
I am so glad the worst is behind you. Praise the Lord for such good news. Take care of yourself and be patient. Sounds like you are on the road to a full recovery.
You are in our thoughts and prayers,
Lynn