Input Appreciated

[Handma1d]

Greetings All,
After 10 months of symptoms, diagnosis, second opinions, treatment option consults, etc. I am scheduled for surgery to remove my AN on May 24th. Was hoping to hear from folks who have gone through the surgery (translabyrinthine approach) and could share about what I can expect in the days right after surgery, what re-balance rehab is like, and what life is like without hearing/balance on one side of my body. I've decided not to get the BAJA implant - I've heard lots of folks don't like them and I want to see if I can make my adjustments without the implant. Doc says I can always have it put in later if I change my mind. Anyway, thanks for listening!
God's Peace Ya'all,
Dia

[leapyrtwins]

Good luck on the 24th - I hope your surgery goes well.

There are lots of stories on the Forum about what you can expect, but everyone is different so take what you read with a grain of salt.

I never had PT for my balance; my doc just gave me vestibular exercises to do on my own both pre and post op.  They helped immensely.

I'm one who decided on the BAHA and have never regretted that decision (over 4 years later).  I had my implant 9 months after my AN surgery and can't imagine life without it.  Some folks do adjust, so hopefully you'll be one of them.  If you don't, try the BAHA demo; I found it very impressive.

Best,

Jan

[Jim Scott]

Hi, Dia - and welcome ~

I'm sorry that you have to deal with this situation (acoustic neuroma) but glad that you discovered the ANA discussion forums.

I underwent Retrosigmoid approach AN debulking surgery, not Translabyrinthine, but AN surgery is quite similar, only the angle of entry to the tumor changes.

Much of your recovery experience will depend on variables you can't know beforehand, such as the exact size (MRI scans only give an approximation) and location as well as the difficulty the surgeon encounters in removing the tumor (its removed in layers) and anything unusual that may occur during the surgery.  Assuming the operation goes smoothly (we all assume that because it usually does) your ability to balance will depend on how much of the nerve was rendered inoperative by the tumor and how much your brain has already compensated for the change.  Those with small ANs generally have to re-learn balance and those with larger ANs often have no trouble regaining serviceable equilibrium.  (I was in the latter category.)

Adjusting to the loss of bilateral hearing can be problematic for some AN surgery patients.  If your hearing has already diminished substantially prior to surgery, the adjustment will be relatively easy.  However, if you go into surgery with reasonably good bilateral hearing and come out SSD (Single Side Deaf) it can be a bit traumatic.  I had lost all hearing in the AN-affected ear prior to surgery so I really didn't have to adjust. 

In an uncomplicated AN surgery recovery you'll need approximately six weeks to recover but 100% recovery can take a year.  Even as your recovery progresses, fatigue is often an ongoing factor.  Balance rehab is done with exercises and lots of walking, preferably on uneven surfaces (that was my main form of rehab).  As noted, being SSD has it's limitations but one learns to adjust, as may AN surgical patients do.  However, as your doctor said; you can always get the BAHA, later, if being SSD proves to alter your quality of life.  It hasn't for me (more of a nuisance/size]) but that is something you'll need to find out for yourself.

Thanks for joining the forums.  Our thoughts and prayers will be with you as your Big Day (May 24th) approaches.

Jim

[Handma1d]

Hey Jan, Howdy Jim,
 Thank you both for the feedback. Now that I've familiarized myself with the site a little, I see that many of my questions/concerns are mentioned in the various sections of the forum.
 Yep, I'm nervous but I've done my research and am as ready as I'll ever be. I have already lost the majority of my hearing and balance on my right side. I walk daily to work on making all the balance adjustments I can before surgery but life outside the house is down right weird - I can't figure out where sounds are coming from or even identify ordinarily familiar sounds. I get frustrated that I cannot control the volume of life outside our home. Engine noises and vibrations make me crazy, not to mention the variety of other bells, whistles and back-up beeps that are a part of daily life. I walk like a drunken sailor too!
 The hardest thing is that I sometimes become completely cognitively disoriented. For example, I can be riding in the car and come to an intersection that I've been at thousands of times but if I have become overstimulated by sound/motion, I have no idea where I am at! It's like I've never seen the place before. Yikes!!!
 I am hoping the disorientation, vertigo attacks, short-term memory problems and sensitivity to sound will cease/improve after surgery.
  My partner is very supportive, but no one in my world really gets it. I can understand why, but it's still frustrating. It's a real relief to talk with folks who are also walking the walk. Thanks again.
Take care,
Dia