Successful retrosig surgery--no facial paralysis!!!

[markmark]

I'm new here.  I've been reading the forum since last Nov and I found it educational.  Before I get into my story, I wanted to pass along some doctor recommendations.  If you're in the Phoenix area or can travel there, I highly recommend Dr. Robert Spetzler and Dr. Mark Syms.  Dr. Spetzler is Chief of Neurosurgery and President of Barrows Neurological Institute (http://www.thebarrow.org/Who_We_Are/203524).  Dr. Syms specializes in Neurotology & Otolaryngology.  These two remarkable surgeons performed my retrosigmoid craniotomy to remove a 1cm acoustic neuroma on my left side.  My biggest fear was facial paralysis followed by balance, headaches, and hearing preservation. 

Long story short, I woke up after about a 7 hour surgery and was happy to find out that I didn't have any facial paralysis.  Was in ICU for three days and then was released from ICU to home.  Although that sounds okay, I have to tell you that for the first two weeks, it felt like my skull would explode from the pressure.  I went with the retrosig approach because I had partial hearing and there was a chance to preserve it, although the chance was low.  Well I woke up deaf in the left ear and it didn't improve.  I was prepared to lose the rest of the hearing in that ear, so that was okay.  I did have tinnitus in both ears pre-op.  Now I have ringing in the deaf ear that's so loud that it's sometimes hard to hear with the good ear.  I noticed that when I use one earbud in the good ear, the ringing in the deaf ear increases when the earbud volume is increased.  Again, I have no facial paralysis, so I'm one happy camper. 

This whole thing started last Oct.  I was laying down watching a movie with my wife and when I got up, most of my hearing on the left side was gone.  That went on for about two weeks and didn't get any better.  I went to see Dr. Bouzoukis (ENT) in Scottsdale and Lisa Thompson (audiologist) who confirmed the loss.  He suspected something more serious than a virus and ordered an MRI.  Once the acoustic neuroma was identified, he referred me to Dr. Syms who then partners with Dr. Spetzler at Barrows.  Barrows and St. Joseph's hospital are amazing.  I can't say enough good things about all my doctors, their coordinators, their staff, Barrows, and St. Joseph's. 

They did the surgery on Mar 16.  I'm just now trying to telecommute part time(started June 1) in an attempt to work into a full day.  I normally work four 10 hr days/week.  After three months, I'm totally exhausted just doing little things.  I can't look at a computer for more than 1-2 hrs before the headaches start.  I'm taking a LOT of Advil but after reading one of the other articles, I'm wondering what to do.  At times, I will get a headache that is just as bad as when I came out of surgery.  When that happens, I take a percocet but it takes about an hour to get some relief.  If I could just get rid of these headaches, I think that I would be doing really well.

I've been going to vestibular therapy for about 5 weeks and my balance is fairly good.  As the day progresses, I get wonky headed (now I know what that means)!!! and I sometimes stumble into things.  When I walk or chew, things jiggle around.  I just started to drive, but I must admit that when you look left, right, left again and then look straight ahead, things move around some.  I'm not sure that's going away. 

I'm going to have the BAHA implant on July 6 and apparently I have to wait to push on the device for about three months after that.  I'm glad I read up on single sided deafness (SSD) as well as topics on this forum because it really prepared me.  Not being able to tell the direction of sound is really life altering.  What's really different is not being able to separate the sounds.  If more than one person is talking or I'm in a noisy environment, I'm totally out of the conversation at that point. 

Here's an interesting side effect.  Starting about a month ago, when I chew, my left eye tears up a lot.  Does anyone else experience that? 

Thanks everyone for sharing your stories.  It really helped me prepare.  Again, if anyone asks for a referral, please let them know that Dr. Robert Spetzler and Dr. Mark Syms are the greatest (at least I think so).

[Jim Scott]

Hi and welcome, Mark!  Thanks for sharing your AN experience with us.  Its appreciated.  

You definitely had an excellent surgical team and a successful surgery.  Your concern about avoiding facial paralysis was much like mine, pre-op, and, like you, I didn't experience facial paralysis so I can empathize with your elation over that.  I'm sorry you ended up SSD (Single Side Deaf) but the BAHA should offer you great relief, as it's done for many of our SSD members.  You seem to be doing quite well, except for the headaches, which are always a big distraction.  I hope they'll subside and that your healing will continue.  

I was delighted to read that the ANA website forums were such a big help to you prior to surgery.  I trust that will continue as you offer your own contributions to the forums, as your recovery progresses.  

Jim

[Lita]

Hi Mark, I'm glad you shared your story. All you discussed is on my mind, because I am in a similar situation and relatively new, but pre-surgery. It helped me prepare. Thanks, Lita

[Lizard]

Mark,
Your journey sounds similar to mine except that I do still have some hearing in my affected ear.  The headaches can be a tough a tough hurdle to overcome so I would try to get in touch with a headache specialist sooner than later. Otherwise you sound like you have a great outcome as well as a fantastic attitude.

Take care and thanks for the post!
Liz

[leapyrtwins]

Hi, Mark.  Welcome to the Forum.

I had retrosigmoid also (about 3 years ago) and don't have facial paralysis either.  Thankfully I experience no headaches; sorry you do.

I've had a BAHA for a little over 2 years now and it's amazing!  I think you'll love it.

Most docs make you wait 90 days after your implant to attach the device (processor) but the wait will be over before you know it.

Good luck,

Jan

[HeadCase2]

Hi Mark,
  I saw yor guestion, "Starting about a month ago, when I chew, my left eye tears up a lot.  Does anyone else experience that?"
  This can be a side affect of AN treatment.  I have it too, when I eat something that is spicy or that I really like, my AN side eye tears up and the AN side nostril runs a bit.   I think this is thought to be due to the trama to the facial nerve.  When some of the damaged nerve fibers heal up they can form some incorrect cross-connections, or it may be "crosstalk" between fibers.  Several people on this forum have mentioned it.

Regards,
  Rob

[CHD63]

Hi Mark and welcome to this forum .....

It sounds like you are doing well with your return to the work world.

I, also had retrosigmoid approach (in 2008) for the removal of my AN with no facial paralysis.  I have had no related headaches and I did retain 20% of my hearing (I wear a hearing aid to boost it now.)  However, I will tell you I did have major headaches following my first retrosigmoid craniotomy (in 1994, for treatment of trigeminal neuralgia).  Fortunately they became less and less as the years went on, eventually stopping altogether before I was diagnosed with the AN.  I sincerely hope you find the right combination of treatments to assist you until yours diminish.

I, too, had extensive vestibular rehab for months (no functioning vestibular nerves on either side for me) and I can say that I walk unassisted and drive with no problems now.  Looking back now, it is hard to remember when I was so wobbly ..... and I will confess I still have periods of wonkyheadedness when I am overly tired or stressed ..... that seems to be the norm around here.

Best thoughts.

Clarice

[msmaggie]

Congratulations on a successful surgery!  When I had my retro done, it was a toss-up between going to your same team or having it done locally.  As it turned out, mine was a meningioma, so my decision to stay here in Houston was a good one. The drs. here were recommended by other forumites, so I knew I would be in good hands.  Dr. Spetzler was highly recommended to me me by a friend in Scottsdale whose son was in his care.  I'm glad to hear that you had a good experience with him.

Priscilla