AN Newbie

[Rob7]

   Hello, all!  My name is Don and I was recently diagnosed with a left side AN after three years of complaining of Tinnitus.  Finally knowing what has been causing the Tin., fatigue and balance issues is a great relief.
   I am, however having some trouble trying to figure out how to deal with upcoming surgery, Unilateral Deafness and possible facial issues.  I am scheduled for surgery the 8th of March at the Univ of AL, Birmingham.  I am confident the surgeons will do a good job as they have done LOTS of these.  What can I do aside from remaining positive about the outcome?  What can I tell my wife to allow her to help me get through this?
    Thanks in advance for the help and for this great website.

    Regards,
     Don

[nancyann]

Hi Don & welcome to the group:

My 1st biggest problem post op (beside the facial paralysis - I'm one of the few who end up with this problem)
was wicked headaches for about 2 weeks - I can't take opiates, so I could only use Tylenol extra strength
(ugh, that was an awful time).

My 2nd biggest problem post op was the fatigue.  I wasn't able to cook, clean, etc.
I slept alot, took short walks & gradually increased my distance;
I took naps whenever my body needed it....  went a couple of weeks like that...

There were also balance issues, ended up going for Balance Therapy
& I can't taste alot of foods now, like steak, chocolate, bread (I can taste vegetables real good though, like a bad joke being played...)

If you don't mind my asking, how large is your tumor?
There IS also the option of radiation, if it is small enough, placement issue,,,,,
You have alot to think about right now....
take your time, keep a peaceful heart,   Nancy

[Obita]

Hi Don:

Welcome to the forum!!

If you trust your doctors and surgery is your choice, all you can do is remain positive.  A positive attitude is very important. 

The only problem I had was the dry eye about 10 days post-op.   It lasted a few months.  I also had some facial weakness, as expected.

I think it is pretty much the norm now for surgeons to leave some of the tumor if it is too risky to get it all.  You might want to ask your surgeon if he/she would back off if the facial nerve is in jeopardy.  Any residual tumor can be radiated after recovery from surgery.

Good luck to you, Kathy


 

[Rob7]

   Nancy,
Thanks for the quick reply and for filling me in on your history.  Bless your heart for dealing with all that so well and for helping the rest of us.
   My tumor is 2.5 cm and is pretty well fused to the nerves and also to the brain stem (?).  I had three doctors look at and all agree that the suboccipital approach is the best.  I thought they also said they would also go into the inner ear from the outside (sublab?), but I am not sure.  I was overwhelmed by the time we discussed all the particulars.  Is it normal for the doctors to be so nonchalant about the hearing loss and other possible issues?  I was taken aback by their quick and honest replies to my questions.....as if losing part of your hearing is an everyday occurrence. 
   Anyhow, thanks again for the help!!!

       Don
P.S.  Thanks to you, too, Kathy!

[Boppie]

I think your wife might like to know that when she first sees you out of surgery your face will be fairly red from the stimulation patches they use to monitor you...that you will have a jaunty white bandage on your head that exaggerates your head size...that you will have one or two IV's in your arms to help with medications and fluids for a few hours...and that your surgery will seem exasperatingly long...she needs family supporters with her that day...you are going to be just fine...and that single sided deafness will cause some depression at first but it will pass...and that our board is open at all hours for her to sign on with concerns.

It is important for doctors to be straight and factual about all issues of the surgery.  Their approach might seem non chalant but their "education sessions" have to be thorough.  Your doctors sounds like good professionals.  The whole scenario of AN surgery seems so shocking at first, doesn't it?..more sudden than any of us like.

Take your regular pj's to the hospital.  You will enjoy having them as soon as you get to the regular room.

I am 65, had a 2 cm tumor surgery in 2005.  My tumor was "sticky".  I had some facial weakness but it resolved by the 2 month.  Please email me if I can help.

[nancyann]

Hi Don:

The docs do this daily, so nonchalant it is.
My case was unusual b/c the facial nerve was not responding when they attached the nerve monitor,
before they even started surgery.
 
Remember, you'll be taking it easy for awhile,
your body will let you know when to rest, take a short walk, etc.

Best wishes to you & your wife,   Nancy

[Pembo]

The docs being so nonchalant is my experience as well. Surgeons aren't usually known for sensitivity. lol

Stay positive. Prepare for some of the side effects but hope that you have none! For example, I had a reaction to the pain meds and had to be moved to an inpatient rehab facility before I could go home. My dh knew there was an excellent rehab in our hometown....the social worker wanted to move me to a nursing home (I was only 35). Dh made sure I got to a great facility. The ot's and pt's were the best.

Also the docs said to plan for 1 week of recovery per hour of surgery. In my case that was 16 hours, and it took almost that long to feel my regular energy level.

Best of luck to you......

[ppearl214]

Hi Don and welcome. I cannot respond to your questions about post-AN surgeries from a personal standpoint, but the suggestions/recommendations made thus far by the gang here  are certainly on the money.  We'll be cheering you on and great to see you here. You're gonna do great!

Phyl

[wwalker]

Hi Don,

I'm 5 months post surgery, so most of what your wife needs to know is pretty fresh in my mind.  The doctors didn't lie to me, but they certainly were optimistic.  I expected to be in the hospital for about a week, primarily to regain my balance.  Ha! When I was released, I had to use a walker for a month, then a cane for another month before I could walk unassisted. About all I could do around the house was eat, watch TV, and go to the bathroom.  I even needed assistance to shower for the first five or six weeks.  Routine tasks such as mowing the lawn, taking out the trash, or unloading the dishwasher were simply not possible for a good long while.

Even though my physical therapist said I could try to resume driving at the two month mark, I didn't even try until the three month date because my left-eye vision was so blurry and I couldn't go for more than ten or fifteen minutes without adding eyedrops.  I had to be driven everywhere for those three months.

My wife had to deal with all the chores that I normally would have done, served as the nurse for treating and bandaging my eye until I got an eyelid weight installed, did all the cooking and cleaning, and served as the chauffer for the innumerable trips to the doctors and therapists post-surgery. 

As unpleasant as AN surgery will be for you, the consequences are even worse for your wife over the short term.

Five months out, I have resumed most of the chores, but I still won't get up on a stepladder.  Its taken me this long to get back to about 80% of where I was pre-surgery.  Without my wife's help, I don't knbow how I would have gotten through this ordeal.

Good Luck,
Wayne

[Jim Scott]

Hi, Don:

Welcome to the forum. 

You seem to be in good hands as far as your physicians and the medical facility go.  I suggest you re-read the post from 'Bobbie'.  She nails most of the things you and your wife can expect, post-op.  Unfortunately, unilateral deafness is often one of them.   Your doctors are casual about this because (in no special order): (a) they see it all the time, (b) they want to be realistic with you and, (c) it isn't their hearing being 'lost'.  However, the retrosigmoid surgical approach can sometimes spare your hearing, assuming you still retain that ability in the AN-affected ear.  Keep your expectations fairly low regarding hearing retention and you may feel better, post-op, even with diminished hearing.  Some of us have absolutely no hearing in the AN-affected ear.  We adjust and, ultimately, survive.

I must issue this caveat: we're all unique and while most AN surgeries are highly successful and the patent back to (relative) 'normal' in a few weeks, others have complications and lingering post-op problems.  A surgeon cannot know for sure exactly what he will have to deal with once the tumor-affected area has been exposed.  I had a fairly successful retrosigmoid surgery.  Even so, I have a few minor post-op 'issues' but nothing anyone would notice or that I can't deal with.  I expect even these minor issues (occasional slight 'dry eye', a few 'numb spots' on the tongue, etc.) will eventually resolve in a few more months as the radiated tumor shrinks. 

Barring any complications, I would expect to spend 3-5 days in the hospital and to be quite tired for at least a week after the surgery, until the surgical anesthesia and hospital meds are eventually absorbed and/or eliminated by and from your body.  Regaining your sense of balance is always a bit of an issue for most AN post-op patients but with some re-hab work, your brain usually compensates and near-normal balance is regained in time.  One hopes that no facial paralysis occurs for any AN patient, but it's a (relatively slim) possibility.  That 'positive attitude' you mentioned, along with having your wife as your advocate while you're hospitalized, are not to be taken lightly.  Both are valuable in your recuperation.

Best of luck on March 8th. 

Jim 

[Rob7]

     Thanks to all for the kind words and giving me realistic expectations based on your experiences.  I will take all the advice and use it over the next few weeks.  I am honestly ready to get the surgery behind me and get on with my life.  The sooner the better as I will be transitioning from the Army to a civilian career this summer.  I will keep everyone apprised of my situation and will ask for advice when necessary.
    Thanks again for all the help and concern!

     Don

[Rob7]

   Hey, all.
Heading into surgery tomorrow morning as planned.  I am a little nervous, but am confident things will work out OK.  My wife will post a message tomorrow noting my progress.  Cannot wait to just get it all over with and start my new (Minus AN) life.

    Thanks again to all for the help.

     Don

[rebarman]

Good luck tomorrow, and know that my thoughts and prayers are with you and your family.

[Jeanlea]

Good luck tomorrow.  Soon you will be a "postie."  We'll be waiting to hear how things go.  Best wishes to your wife also.

Jean

[Derek]

Hi there Don...

Very best wishes for a speedy and successful full recovery. Looking forward to your next response as a 'postie'!

Regards

Derek