Newbies:

[Obita]

Seems like there are alot of New People out there right now so I wanted to say HI and put in my two cents.

ANs are serious and must be taken out or zapped (once they get medium to large).

Single sided deafness is not the end of the world - not even close.

They are benign so obviously things could be alot worse.

Recovery from AN surgery is not a whole lot different than from any major surgery (except for the fatigue part).  I have had three surgeries since my AN and recovered in about the same amount of time for each - abt. two months.  Yes, it could be longer.............

You won't be a burden to anyone.  Family and friends help each other out.  I did have my sister grocery shop and vacuum and my brother mow the grass.  I never felt like I was a burden because I would have done it for them.

I asked my Doctors which approach was better for keeping an eye on the facial muscle.  They said Translab so thats what I had.  My Father had a stroke 20 years ago and his left side was paralyzed including his face so the decision was easy for me.

Confidence in your Doctor(s) is everything.  If you get a bad or uneasy feeling, run.

Everyone and every tumor is different.  I doubt their are two regulars on this board that have had exactly the same recovery and outcome.  You just can't predict what will happen post treatment.

You can keep a positive outlook and like one of you said: You will beat this!!  Do everything in your power to pick the right Doctor and treatment for you.

Best of luck to you all, Kathy

[Raydean]

I'd like to add to the above excellent posting

That it is very important to assemble a medical team with vast experience in the treatment of AN's
in which ever treatment option is chosen.  Experience of the medical team is a key factor in reducing the potential outcomes. 

Best to all
Raydean

[Pembo]

I just wanted to say that I agree that having confidence in your Doctors is so important. My drs were wonderful, always very caring and interested in me. One even called me at home a few days before surgery just to see how I was doing emotionally.

[Sefra22]

Thanks Obita for your post. I agree that things could be a lot worse than single sided deafness. I consider my hearing in that ear pretty much gone anyway. With all the scary things to read about this condition, it is so nice to hear about people whose recovery went well.

[Obita]

Oh my gosh Raydean - I can't believe I forgot the most important thing!!

I did ask my Doctors how many they had removed and they said over 500 at that time.  My Sister pipes in and
said:  Very impressive........how many fatalities?  NONE they replied.  Leave it to my Sister.  You never need to
wonder what she is thinking. 

Thanks - Kathy

ps:  so I you want to know something, just ask them!

[DeniseSmith]

Right on! Kathy!! 

Denise

(29 days!!) 

[ppearl214]

Kathy,

thank you! I logged on today for the first time in a short while and see so many new names and situations as well.  What you have written is true and hoping all "newbies" here know that we are here to help in any way we can.

Sending you huggles as well....

xo
Phyl

[Jim Scott]

Obita:

Thanks for your perceptive post.  I certainly appreciated reading it.

You are correct of course and as one of the 'lucky' AN patients - who is having a rapid recovery from a large (4.5 ) AN tumor removal -  I can attest to the fact that (a) no two people wil have the exact same experience with their AN surgery and recovery and (b) choose your surgeon carefully and do not be too timid to ask specific questions of any prospective neurosurgeons who may operate on you. They are human beings, not gods, no matter what they might think!   This is truly a time to be 'self-centered'...it's your life.  My surgeon was totally focused on me and my surgery, and took my concerns very seriously.  I had total confidence in him and his hand-picked 'A Team' - as he referred to them.   My neurosurgeon would not even allow surgical residents or interns in the operating room, only 'his A-team'.  He was that picky about who worked with him during surgery.  Even the scrub nurses were experienced and chosen to be present for the surgery by my neurosurgeon, who knew them personally (on a professionsl basis).  That - and lots of AN removal experience on the neurosurgeon's part (my doctor had done many hundreds and was near-legendary in the hospital he used) - is the kind of experience and attention to detail you want. 

I had the retrosigmoid AN surgery, which is the oldest form of AN removal surgery and quite effective.  I had no facial paralysis (before or after surgery) and few of the many problems often associated with AN removal surgery.  All of my vestibular nerves were carefully monitored during surgery and no nerve damage was done, for which I am eternally grateful.  I have normal facial expression, can eat and drink normally andhave only experienced the occasional 'dry eye' symptom (left eye,of course) easily 'addressed' with a few OTC eyedrops.   As my hearing (in my left ear) was long since lost, pre-surgery, I had and have no expectations of it ever returning and have both physically and emotionally adjusted to that loss.  Any hearing improvement on my left ear (the 'AN side')  would be an unexpected blessing.  4 weeks post-op (at this posting) my balance is rapidly returning (I can almost walk 'normally', now) and I feel stronger every day.  I'll see my neurosurgeon for a 6-week follow-up visit (in 2 more weeks) and I fully expect to be allowed to resume (non-exhausting)'normal' activity and...I hope..the O.K. to drive again.   I don't enjoy being dependent on my wife and others when ai need/want to go anywhere.  It gets old, fast  Other than that small inconvenience, my recovery is going very well.

No, I may not be 'typical'...but what AN patient really is?

UPDATE:  My neurosergeon unexpectedly asked me to come in for a check-up on July 6th, two weeks ahead of schedule.  He mercifully gave me permission to drive and resume 'normal' (non-physically-stressful) activity.  No lifting heavy objects...as if I ever did much of that !  As I am doing so well, he wants to begin working on my radiation treatment plan with the radiation team (including himself).  I see the radiation oncologist (who will map out the treatment plan) on July 13th.  I'll update my progress as it occurs.

EDIT:  After a lengthy consult with the radiation oncologist (on July 13th) we decided to postpone radiation until September in order to give everything time to fully heal.  I will be undergoing fractionalized radiation therapy which consists of 30 short treatments over 30 days.  Laborious - but conservative and safe.       7/15/06

 

[Obita]

Hello Everyone:

Yikes Jim Scott. :o  What a large tumor you had.  It does indeed sound like your recovery has been very speedy considering how big your tumor was.  Good for you and keep posting the "good stuff"!!
I drove myself to the eye dr. (on day 10) because I couldn't get a ride fast enough for me.  My eye dried up overnight and I knew I scratched the cornea........I remember my surgeon saying I could drive when I was ready........I doubt he meant day 10 ........ but it was only 2 miles..........

Denise:  25 days and counting down fast!!  See you a week from tomorrow at our usual coffee house.

And about single sided deafness......normally it does not bother me too much - Last night it did.  Bad.  It was our annual "Cruise Night" in Lakeville where about 400 classic cars drive right by my house.  We always have a big group that camps out in my yard to watch, eat, drink etc...well, some old cars are LOUD.  Not to mention the streets lined with hundreds of people and some of the souped up ones squealing their tires.....I thought it would never end.....but I refuse to be a hermit or change my life so I will do it again next year, happily.

Kathy

ps:  BAHA users - what are real loud crowds like for you?  Hi Joef.

[Joef]

in super loud contions, the baha will "cut off" or "top out"..(and this can be adjusted with the gain controls) for example, when I'm in the car and blast the radio as loud as it will go, and then block my good ear .. the sound is still low ... and I can adjust to volume in the radio, and I can't tell any difference. I've thought of getting some ear plugs for loud stuff on my good ear!.  so I could listen with the BAHA only!

[Obita]

Still thinking about the BAHA - I have cancelled two appts. with the audiologist - just don't have the energy to fight with Blue Cross/Blue Shield of MN right now and just plain don't want another surgery for a while.  Thanks Joef,  Kathy

[maddy]

It's been almost a year since my surgery.  My diagnosis seems different than most others, because they were doing an MRI looking for something minor when they discovered my 2.5 tumor.  I didnt have any symptoms that should have been there for that size, but they found it in time and removed it in a 16 hours surgery.  I had 100% hearing in my left ear prior to the surgery, but the placement of the tumor made it impossible for me to keep it.  MY surgeon had to go through the nerve, which he told me before the surgery, but I think i've adapted very well to it.  Within 2 weeks I was back at school full time, and within 6 I was playing volleyball with my high school team. 
I was given the option for the BAHA but for sports I'm not allowed to have it so it'll be something to think about in the future for me.
Pretty well the only thing bothering me at this point is the inability to cry with my left eye.  I didnt know that was going to happen, but i'm told it's supposed to come back...
Thats my two cents.

[Obita]

Welcome Maddy:

YOU HAVE THE RECORD FOR BEING BACK TO REAL LIFE THE FASTEST!!  I can't believe you could go back to school and sports so fast!!  That is truly amazing.


Who was your Doctor?  You can put his name on your signature if you want.  All the world should know what an incredible job he did. 

If you start a new topic with this post you will get a zillion people sending you notes.  There is a way to move it but I have not done it.  On this thread it might get buried.

People need to see this post of yours!!

The tears are a very big problem indeed.  Do you need to use drops?  I am two years post op now and don't need them anymore.  That was my biggest problem after surgery.

Thanks for writing Maddy,  Kathy O'Brien

[Pembo]

Kathy, Don't give up on the Baha. The surgery is EASY!!! I went in for surgery at 8 and I was home by lunch and that includes the 1 hr drive from the hospital.  And my doc said BlueCross is one of the easiest to get the baha approved.