Ability to drive post op - large AN to be removed

[Kathy M]

Good Morning!  I am waffling between feeling very positive to scared to death to expecting a long painful recovery...and I know that my upcoming consults with some good surgeons in Ohio will be best to address my never-ending list of questions.  But - I've recently read some responses to others that mention inability to drive (at all) or at night.  Is this typical?  I have a one hour commute to work and generally leave when it is dark in the morning.  My AN is large (3cm at time of diagnosis).   For those of you who are in the know and/or have had similar size ANs to deal with - what has been your experience here?  This is something I had never considered and now I'm in the "scared to death" category!   

Kathy

[Cheryl R]

Kathy,     We all know how this is such a scary time.     The odds are going with a super surgeon that you will do better than you think.            I am NF2 and have had now 4 surgeries.        I have never had a very painful recovery.       There has been some neck pain and some just post op achiness where a pain pill took care of it.             There is alot of talk of long recovery.        For a month or less you will feel not right.      This is not always real bad, just not right.    Just really tired and that off balance feel.             You may have compensated more than you think already with the difficulties so it may not be real bad for you.          Walking outdoors and in a mall  might be the worst.  Doing it anyway helps in the recovery.           Yes you may stilll have some balance issues for a time but you will be back to a very close to normal life fairly soon.                I was back to work as a nurse in 2 months.                 One gets bored in time as you do feel pretty good but find when overdo than get too tired.             The biggest thing is don't push yourself to prove you will have a normal life again.    It really does improve in time.     
I drove in 2 weeks  but live in a rural area and to a smallish town.     To a large town, (Des Moines) was closer to 4-6 weeks.     Depended how I was doing.     
Everyone is different in how their recovery goes so hard to say exactly how it will be.
 Hang in there and always ask any questions you think of.                  Cheryl R     

[MAlegant]

Hey there,
Sorry about your diagnosis but glad to see you posting here.  (My tumor was large as well.)  It's hard to predict about the driving.  Also, recovery is not necessarily painful, though it can be long.  The first few days are rough  but beyond that (for me at least) it wasn't bad and it got so much better every day.  I was driving again after a few weeks but I did not have any balance issues and I was off all the loopy drugs.  Hang in there.
Best,
Marci

[calimama]

Hi Kathy,

Everyone's experience is differnt, so all you can really do is ask as many questions as you can and try to prepare for anything/everything.

I THINK i would have been "comfortable" to start driving maybe a month after surgery. I was not really able though as i had a mean case of double vision that continued for several months (happily i was totally recovered by 5 months, YAY!). Not to scare you, i undertstand the DV is pretty rare, at least the kind that continues weeks and months after surgery. I thought i was one of the really rare ones whose DV would never recover, happily that was not the case.

In terms of balance issues, everyone is different, but i really didn't have too much. Maybe because my tumor was already kind of large (2.9cm) so my brain had time to adjust to the growth of the tumor (over a long time) and disruption of the nerve. I didn't try driving til around 3 months post, but that was with one eye covered so i was not really comfortable with that. And i live in the city so there are lots of challenges.  I have driven a few times now since recovering my normal vision, and don't have any dizziness or issues with turning my head quickly (as many had warned of here). Another thing i was expecting that didnt happen.

I am SSD and just the other day noticed that when i had the music on kinda loud (great song!), i realized that i could not hear that i had the signal on. This seemed strange, so i turned down the music and sure enough, the sound was there. Note to self: keep the music on or low!

Oh, and don't spend too much time worrying about a "painful" recovery. There are drugs out there to deal with these things, and you may be surprised at how easily you get through this (even with a large tumor). I really didn't have much pain at all, although the first day and night after surgery are a total fog. I managed just fine at home with the odd Advil in the morning.  I think the larger tumor is really more of an issue for the facial nerve, but hopefully your doctors can give you some stats and comfort around this.

Take care and try to relax. So much worry is a waste of time and won't affect the end result. Good to ask questions though, and plan.

Trish

[Jim Scott]

Hi, Kathy:

I'm sorry you're in a 'scared to death' state of mind right now.  I hope I might alleviate some of your anxiety. 

As you've already gathered from previous posts, there is no 'standard' or 'normal' scenario or time frame for recovery from AN surgery, other than 'ball park' estimates. 

I underwent retrosigmoid approach surgery for a 4.5 cm AN and, thankfully, came through the operation with no significant complications.  I was discharged from the hospital within 5 days.  I recovered rapidly and my neurosurgeon gave me permission to drive within 2 weeks of my surgery.  I started driving again that same day and never looked back (except to change lanes). 

A few AN surgical patients have been able to drive even sooner, the majority somewhat later (a month or more) and some, much, much later in their recovery, if at all.  It varies.  All I can state is my own experience - and that was a fairly quick return to driving.  I hope your experience is similar but, unfortunately, as much as we want them, there simply aren't any guarantees with acoustic neuroma removal.

Jim

[Kaybo]

Kathy~
Hello (& I don't think I ever Welcomed" you - I have been reading more than posting lately).  It is normal to be scared right now, but it will all be OK.  About the driving, I am just shy of 13 years out from my surgery and even though it took me a few months to get back behind the wheel (I had some other complications), I drive ALL the time now - day or night!!  Of course, I don'really have time for anything else!!  LOL!  No, if I could not drive, I'd adjust!  AN's are not life threatening but can be life altering - the more flexible you are willing to be, the easier time you will have!!  Check out my blog (address below) if you want to see what life is like for me 13 years later!  Please feel free to PM me or send me your number & I will call you! 

K 

[Kathy M]

All of you are such a lifeline to me - thank you for easing my mind a bit.  Tonight is my first real earache - I was out in a failrly cold wind today with family and didn't wear a hat or scarf.  Maybe I need to think differently about babying it a bit. 

I'm sure I'll have more questions this week.  I"m hoping that I hear from the Mayfield Clinic and OSU med center to get some firm appointments scheduled.  That will be a very good thing!!!!!!!!!!!!!!!!!!!

Have a wonderful start of the week.  I know I'm going to be counting my blessings tonight that you all are here.

Kathy

[Joef]

Driving has been a challenge ...but since surgery, I have logged about 60,000 miles , in multiple countries... ( including England !!)

as for me .. I have to pay close attention to the road... if I look for road signs to scenery (and this was hard on vacation!)... my hands seem to follow my eyes ... (not good !) ... in my head I remember how to drive.. but my hands forgot ... its been like I was 16 again , re-learning the coordination of driving... it was about 3-4 months before I drove to work ( 1 1/2 hour each way, on the daytona raceway) ... plus I started to take the train a lot too ..

now its been 3+ years... and its a lot better... still not perfect... but its getting close now... (the main issue is drops....and with the drops and night driving... it can be hard to see because of the blurriness)

[Crazycat]

As any of us that have been afflicted with an Acoustic Neuroma (Aroma) (Neuroma, aroma.....hey, that's a "mute" point right Jim? (Inside joke))
can tell you, fatigue can be just as much a problem as equilibrium issues and even double vision.

Before my treatment, I nodded-off behind the wheel for the very first time ever. Even though I knew I was getting tired and took every measure I could to stay frosty, I simply passed out without any control as I was negotiating a curve on a secondary road. When I came-to I was on the opposite side of the road, broadsiding a snowbank pilled against the guardrail. Luckily, there was no one coming the opposite way else I would have been roadkill. That road coming off the highway and near a UPS facility, is a major truck route.

I could go on and on about the fatigue issue. Just be careful driving and especially on long drives.

Be advised that it can be extremely dangerous!

Paul

[Kathy M]

Thanks for all your replies!  Guess I'll not panic yet or turn in my resignation - but I think I will ponder some contingencies on getting to work in case things take more time than my disability leave is approved for!  Paul, it sounds like you had a guardian angel sitting on your shoulder when you fell asleep at the wheel.  That would have really been a drag - getting through AN surgery and then getting creamed by a truck!  Words to live by....

Kathy

[JulieE]

Hi Kathy,
Sorry about your diagnosis, but aside from your Drs. professional opinions, this is a great group for support and information - as you can see by the previous posts.  I will just second some of those posts by saying that my experience had virtually no pain, and although recovery was longer than the 6 weeks my drs. said, I was driving about 2 weeks post-op.  After a couple close calls with my Mom and MIL driving, (bless them for being there - I am abit of a bad passenger, being a driving fanatic) but I decided we were all safer if I resumed driving, even in my feeble condition.  My docs said driving is one of the first things that comes back because it does not require balance: seated, and coming from the core.  Now, I did take several precautions:  no night driving at first; got my husband to drive kiddos at first; and I drive rested, and recognize the challenge of driving caused fatigue (all challenges to your brain do, I learned from this sight, but that gets normalized).  Fatigue, as mentioned by previous posters, (and having posts dealing with it alone) is nearly my only problem shared with this group almost 8 months out now, but it is manageable as you can find stratagies in those other posts.  Anyway, you'll be fine.  It's higher stress in the lead up to course of action - with all the descision making, etc., so I will pray that goes as smooothly as possible for you.  As for me - I am striving to get back on my motorcyle just as soon as I can prove to my husband I can ride my bicycle in a straight line!
Best,
Jules

[Crazycat]

Kathy,

  That incident occurred well before my treatment or even my diagnosis. By the time I got to be diagnosed, I could barely even walk. I thought that I either had MS or a brain tumor. I was right. I had gone as far as narrowing it down to an Acoustic Neuroma from my own research.

As far as driving though, as time went on my driving worsened. I began to get pulled-over on a regular basis in '05 and I hadn't been pulled-over since 1988. To drive behind me it appeared that I was inebriated. I was all over the road. I would be running over those ridges that make a lot of noise and get your attention in the breakdown lanes constantly.

My driving skills have immensely improved and stabilized since my surgeries but I still have balance and double vision issues.

Paul

[dasanti]

Hi there! You should not be scared. I drove two months after my surgery of a large +5 cm AN. Only thing that could enlarge this timeframe is the developing of double vision post op. But usually these last for no more that 2 weeks, so you will be fine.

I had sensitivity to light for a while, extreme sunny conditions but not to dark. So I hope this gives you courage!

Good luck with your journey! I hope to hear more from you!

Dan

[Crazycat]

dasanti,

  You got hit pretty hard as well!

 I still have double vision although not nearly as bad as just after surgery. My AN was on the left so the double vision is especially prevalent when I shift my eyes to the left-side.