Newly diagnosed

[Joef]

actually I find my direction ability is worse with my BAHA !!..  without the BAHA I spin my head and take a good guess because it might be louder in one direction ..

  with the BAHA .. I hear in all directions, so my "guesses" are even worse... but if you ask me .. its a good trade ....   

[Mtn Gal]

Hi Greg and others with small ANs,

I began losing my hearing in the Fall of 2002.  I was diagnosed in the spring of 2003 with a 7mm AN.  Doc recommended the watch and wait.  2004 MRI showed no growth.  Skipped the 2005 MRI because of sickness in the family.  2006 MRI showed 13mm, almost double in size from the 2004 MRI.  Still small compared to others, but the doc said it was time to do something.

Had retrosigmoid surgery on 05/31/06, came home four days later.  Surgery went extremely well; no damage to hearing, balance or facial nerves.  I have had basically no complications and no side effects.  My hearing remains the same as before surgery (cannot hear someone speaking on my right side unless they are loud).  My balance before was only off when I moved too fast or when taking the first step up or down stairs.  I still have an occassional off-step that I have to right myself from.  No dizziness or headaches.  I have occassional throbbing on the right side of my head when I bend over or when I sit up from a lying position or stand up too quickly and fortunately it only lasts for a minute or so.

Was doing so well that I went back to the doc at 3-weeks post-op and he released me to go back to work.  I went the next day.  I do have an office job doing mostly paperwork and computer, no strenuous stuff.   I just celebrated my 45th birthday and I am not a real active person in regards to exercise; I am overweight, but in good health otherwise.  I am overactive in community support events and organizations, so I am a busy person.

I just wanted to let you folks know how well my surgery went.  I was expecting all the possible side effects from the surgery and I realize that I am truly blessed not to have had any problems so far.  Try to have a positive attitude and a great support group from family, friends, church family, neighbors, coworkers, etc.  I am glad I didn't wait till the AN had grown larger.  I am also glad to have this part behind me and back to a somewhat normal life.  There is no hurry when the AN is small, but from my experience, it was to my advantage to get it out while it was small.  I have no regrets with my choice of action. 

Best wishes to all,

Mtn. Gal

[Jim Scott]

The more I read about post-op problems and stats of people suffering problems the more I keep thinking "just wait and see".

This is certainly what I'll be doing for the next 12 months. At the moment the "balance problems" issue is the one that concerns me most.

I already suffer acute motion sickness (and have since the day I was born). Anything that moves will make me nauseus and vomit, apart from
when I drive myself. When travelling by air or out fishing in a boat, etc. I just taken tablets and I'm fine. However, having suffered motion sickness
I would dread the notion of living with something like this 24/7. My understanding of the radiotherapy/surgery options is that there is a chance of
keeping the "balance organ" intact with everything except translab. Is this correct?

Anyway, still researching and finding links to OZ. Have found some already, still looking.

Every AN patient/case  is different.  Don't let some post-op 'horror stories' scare you away from necessary surgery to remove your acoustic neuroma tumor.  Even if you have any balance 'issues', post-surgery, they usually resolve in time, especially with some rehab.    That's if you even need  to have AN surgery, which, in your situation, may not be the case at all.

With a relatively small  tumor, radiation is still a viable option for you and, as radiation treatment is non-invasive, this method of tumor removal, while not totally free of side effects, drastically simplifies recovery for most folks.

I wish you well in your decision.

Jim

[gregorywannabe]

Thanks everyone for your stories and advice. Ananika - the surgeon did say that in his experience there was no problem with motion sickness due to the AN or surgery, if you had it before you would still suffer, if you didn't then it you still wouldn't. Boppie - yes my main hearing problem is speech recognition, rather than complete loss of sound, so that is certainly something worth considering, i.e. a translab would mean total deafness and a loss of perceiving sound direction. At this stage I am still leaning towards radiosurgery BUT that's without even having a consult with a radiation oncologist yet!

[Boppie]

Gregory,  At this point I don't suffer from the car/air sickness and related sensations post-op translab.  I too suffered motion sickness most of my adulthood.  However, my sickness usually reached my lower intestines. 

After translab I was released on the morning of the fifth day, rode on the car passenger seat 115 miles to get home and had not one problem with motion sickness.  I drove around the block at two weeks post op.  I have ridden in the car and flown Houston to Chicago both ways in the past 6 months and haven't had a motion sickness problem. 

My balance pre-op with 65% hearing loss was fair.  The drunk test walk was fair for my age.  Post-op I am 98% back to my normal.  I do experience some dizziness when I first get up in the morning.  This smooths out in an hour or so of routine moving  around.  Considering my age I am balancing very well. 

I read that you have some hearing left, and if I were young like you, I'd opt to preserve it regardless of predictions about dizziness for either treatment method.  I'd base my treatment choice on hearing preservation, if the odds were good enough.  As I said before, hearing directions is what I miss most.  Right now, I hear everything coming 100% from the good ear side.  I never know where a hidden sound is coming from.  I must see a speaker's lips moving to know that someone is addressing me.  Sure, glad my husband isn't a ventriloquist!

I have talked to surgery patients who vomited a lot in ICU and I have read of some who had no sickness.  Me? I vomited a tiny bit once in ICU.  Go figure! me with the motion sickness history.  The post op vomiting is about the anesthetic and the drugs they must give you.  But I think motion problems are not related to the AN per se.  I believe you are born with a predispositon to it.  Does your parent have it?  Does any sibling have it?  As a child I loved a huge farris wheel.  For the past twenty years I have stayed off them, make me totally disoriented and falling down sick.  I think I developed the problem and was predisposed to it.  My Mother always rode in the front seat.  My little sister gets terrible motion sickness.

Sorry I rambled.   

[gregorywannabe]

I'm back yet again! Had another MRI, still no size increase from the original 2 years ago (still 4mm) so now waiting 18 months before the next MRI.
Hearing on that side is about another 10% worse.

I've gotten used to the "watch and wait", mainly by trying to ignore it! A bit hard when I'm reminded every day by my bad hearing and very bad
speech discrimination on my left side. Great for sleeping when there's noise around though!

I figure that every year I can wait that's another year that techniques, both surgical and radiological, can improve.

I keep dropping in here occasionally to catch up with things so good luck to everyone else with their journey.

[Obita]

Good for you Gregorywannabe!!

See you again in 18 months if not before.

Kathy

[linnilue]

Good job Greg...watch and wait works, don't you think.  My doctor in Boston has been watching someone for 17 years!! Yes, it's true.  The person is in their 60's now I believe.  So I think you have many years to do this if the growth remains like this.  Maybe you may never have to do a thing, wouldn't that be nice.  Congratulations and good luck.  See you in a year and a half.  Holly

[gregorywannabe]

Thanks for the thoughts Holly and Kathy. Yep, I'll catch up again in a year and a half. Hopefully by then I will have done my first 1/2 marathon, full marathon, and
1/2 ironman. That's the plan anyway! 

[ppearl214]

Hi Greg,

Good to hear that your AN is still small and that watch/wait is still the option... sounds like things are manageable for you right now and send you wishes for continued wellness........ Please also keep an eye on the new discussion forum for "watch/wait" as there are folks there that can also learn from you and possibly share insight as well......

Be well,
Phyl

[linnilue]

Thanks for the thoughts Holly and Kathy. Yep, I'll catch up again in a year and a half. Hopefully by then I will have done my first 1/2 marathon, full marathon, and
1/2 ironman. That's the plan anyway! 

    IRONMAN !!!!  Wow...now that's impressive even at half.  I've been to the Ironman in Lake Placid (not for aqthletics, not me! but because my husband invented the Balance Bar and there was a booth) and I think it's one of the most impressive sports events.  You must be one heck of an athlete to accomplish that.  Good for you...I hope you can wach and wait forever!  Holly