Side effects, BAHA, and distractions

[Tamara]

Good Morning -
  I too have just been lurking lately - too much stuff happening to type coherently!
  First, I am curious about the common surgical side effect.  Why does everyone (or nearly so) have taste and eye dryness issues???
 
  Secondly, I will likely have to wait on the BAHA - I'd hoped to have it "installed" at the time of my translab on the 12th.  My drs office called and told me they are backordered (!?)    They are supposed to be available in the middle of June, so it will remain to be seen whether the 12 is the middle or not.

  This past week has been very challenging for my family:  my FIL fell and fractured his skull on Monday.  He was in ICU at first, but has now recovered and is at home, very crabby and unable to drive for 3 months.  My MIL can't drive, so that will be interesting.  Then Tuesday afternoon my younger son fell off his pogo stick and broke both (yes, both) of his arms.  YIKES!  He's doing remarkably well - has always reminded me of Tigger, the way he "bounces" back.  We were evaluating whether or not to go ahead with my surgery and have decided it's a go, but please keep my family in your prayers, if you would, as my older son and my husband will be taking care of me, my younger son, my disabled daughter, and his family.  Sigh.

Tamara

[leapyrtwins]

Oh my goodness, Tamara, you have your hands full this week! 

Just the son with the broken arms would be putting me over the edge, but you sound like you are handling it all very well.  I'm glad you have a support system in place to help out during your surgery and recovery.

I had taste issues post op but they went away in about 6 months.  It's not a wonderful thing, but it's not as bad as it sounds.  Some things tasted perfectly normal to me, some things tasted very odd, but in my case it wasn't like everything tasted horrible.  My biggest eating issue stemmed from the nausea - I found it hard to eat anything for a while which really sapped my energy.  Keep in mind though that not everyone has nausea - some do, some don't.

As far as the BAHA goes, I'd just take it as it comes.  I never contemplated having the implant at the same time as my AN surgery - didn't think I'd need it - but my doc said he wouldn't have been in favor of combining the surgeries anyway.  From what I understand, combining them is usually the doc's preference.   Prior to my implant I couldn't imagine having another surgery; I figured the AN surgery was enough for a while     But the BAHA surgery is nothing like the AN surgery - it's quite simple in comparison.  A good number of patients get their implant after their AN surgery.

My advice is, don't stress about the BAHA surgery.  If they can do it at the same time as the AN surgery, great.  If they can't, do it another time.

I'll be keeping you and your family in my prayers,

Jan

[Jim Scott]

Hi, Tamara:

Wow!  You certainly do have 'a lot of stuff happening'!

I assume your son's broken arms were 'simple' breaks with no complications and that he's able to cope with the casts.  Your father-in-law's fractured skull could have been even more problematic but at least he's recovering, albeit unable to drive for three months, leaving both he and his wife without a means of transportation  That may mean that you and/or your husband will be doing some extra driving for the next few months.  Other than that, nothing much happening, huh? 

The reason many (not all) post-operative AN patients suffer with 'dry eye' and taste issues is due to the fact that the AN is adjacent to other cranial nerves that control or affect facial movement, including the eye.  Some patients experience drooling problems because of this and in the most severe cases, facial paralysis, an inability to close the AN-affected eye and/or produce tears that lubricate the eye.  Taste problems and even swallowing problems can also occur for the same reason: the nerves that control these functions are compromised or disturbed, either by the encroaching AN or by the surgeon when he operates to remove the AN - or both, as sometimes the AN is heavily involved with these nerves and avoiding them is simply impossible.

I experienced a very mild case of post-op 'dry eye' and still have it, two years post surgery.  I had minimal facial weakness but I do have a tiny 'numb' spot on the side of my tongue which was there before the surgery. Prior to surgery, my sense of taste was completely compromised.  I lost all interest in eating because of that.  Food tasted like cardboard.  The good news is that I lost almost 35 unwanted pounds.  Post-surgery, my sense of taste returned and food tastes good again.  I've also managed to keep my weight where it should be, so I'm pleased about that.   

As we always say, to the point of becoming a cliché, 'every AN case/patient is different' so you may have a dissimilar experience than I did - or others had.    However, as you noticed, 'dry eye' and taste issues are fairly common following AN surgery.  I hope you're able to avoid them, Tamara.

I don't have a BAHA so I can't comment on that issue but I do hope your unit comes soon enough to have it implanted during your surgery on June 12th and that you find it useful, as I'm sure you will. 

Stay connected and try not to worry too much.  You'll have many people praying for and thinking of you in the days to come. 

Jim

[Kaybo]

Tamara~
Good gracious - when it rains, it pours, huh?  Things are bad for you, but at least nothing life threatening.  I guess it will be good to get it all over with at once!! 

I don't really remember much of my eating habits after surgery -- I do know that nothing really tasted great and that I was very nauseated for a long time (but I was also pregnant - and then miscarried - result of postponed surgery, already done pre-op, and lots of hours to fill!).  I remember Dave getting me Hot'n'Sour soup - probably b/c I thought that it would taste better than other things.  I didn't have anything to compare it to or have others' experiences to draw on.

Hope things settle down for you -- will certainly keep you & your family in my prayers!

Peace,
K 

[Debbi]

Oh Tamara - what a week you've had!  I hope your son is okay.  Strangley, my FIL fell the week before my surgery and broke his hip - he is just coming home from rehab tomorrow.  When it rains...

In my case, the dry eye is because I have facial "numbness" and my right eye doesn't tear at all.  So, I have a veritable cornucopia of eye stuff.  However, I am told that this will be temporary.  I haven't had any real significant taste issues with the exception of wine and vinegar, both of which taste off to me.  Happily, chocolate still tastes great!     As a lover of red wine, I am hopeful that that taste will return as my facial issues resolve.

I'll be sending some positive thoughts your way this weekend.

Debbi

[claire1]

Tamara

My heart goes out to you and family.
One possitive note is that kids heel fast and are capable of learning alternate ways while casted. My son broke his legs in an accident and got around famously on his skateboards.  It was amazing. 
Are there any resources that you can call upon for you aging in-laws? (i.e. Community bus-visting nurses-visiting volunteers for medical appointments?)
My prayers are with you all. God doesn't give us more than we can handle. He's always there when you need him.  Stay strong.
Best Wishes
Claire

[cindyj]

Oh, so sorry, Tamara.  What a time you're having.  Glad it is nothing more serious, but the timing is pretty awful for you.  Hopefully things will stabilize before your upcoming surgery. 

About the taste problems after surgery, I wonder if some of it could also be related to the anesthesia...I have not had AN surgery yet, but have had many others (one this week) and my sense of taste is always off for awhile.  May just be coincidence, though...But, like Debbi, I can still taste chocolate!

Try to take it easy these next couple of weeks...you know we're all pulling for you and your family,

Cindy

[wendysig]

Tamara -

I know you don't know me, but I saw your post and had to reply.  Your family certainly has had more than your share of misfortune this week.  Good luck with your surgery and everything else.  You and your family will be in my prayers.

Best wishes,

Wendy

[Tamara]

Thanks for the replies!  I'll be packing those special eye drops along with the Dawn, I guess, though I've ordered my surgery to be side effect-free

Thanks for the support, and cybershoulders to cry on...we're all feeling better, taking a few deep breaths.  My son originally had both arms in long casts, up above the elbows.  We gave him a marshmallow fork to eat with.  On Friday, he was able to get one of them reduced to a short cast, so now he can bend his elbow and feed himself, so that helps a lot.  He's still got a terrific attitude, so that helps too.  FIL is still a bit wobbly, but mostly crabby, so I guess that's ok too.

Again, thanks!
Tamara

[lori67]

Tamara -

You know you're having a bad week when your brain surgery seems like the most normal and uneventful part of it!

Tell everyone in your family to stay put, off pogo sticks and wrap them in bubble wrap.  I'm quite sure your son will find very creative ways to get things done until the casts come off.  They always do.

Try to avoid any more "excitement" for a little while.  I'd say you've got your share already.  At least you'll get to take a nice nap once the anaesthesia kicks in.  Sounds like you need it!

I'll be praying for a side effect free surgery for you too!
Lori

[Debbi]

Tamara-

Wow, just realized that you are three days away from surgery!  I'm sure are in the final stages of getting things in order - just remember to take a little time for yourself.  I'll be thinking of you on Thursday, and sending lots of good wishes and prayers your way.

If you can have someone post to let us all know how you are doing, that would be wonderful.

Be peaceful.

Debbi

[cmp]

What an awful week you had--I'm so sorry for your son and FIL, and that you have so much on your plate right now! As Lori says, how ironic to have your imminent surgery seem almost like an afterthought!

I know you're probably swamped attending to details right now, but I wanted to echo Claire's suggestion that you explore any local resources you can tap into to help your in-laws get around while your husband is busy with you and your kids. Maybe check the front information pages in your local phone book, either for specific resources (ie a community van for seniors) or a senior hotline or council on aging that may be able to point you to them? At the very least, that might be a great number for your husband to keep handy "just in case".

Best wishes for a successful, complication-free surgery Thursday, and healing for your family--you will all be in my thoughts!

Carrie

[leapyrtwins]

Debbi -

thanks for reminding us that Tamara is only 3 days from surgery.  Time is just flying. 

Good luck, Tamara.  Did they ever decide if they are doing just the AN surgery or the AN surgery and the BAHA surgery?  I lost track.

Jan

[er]

Hello Tamara
1st I am so sorry FIL fell and fractured his skull,  I sure hope he does well and no side effects from it. And when it rains it pours. Sorry about your son breaking both arms. My prayers are with you and your family. 

2nd Good luck on your surgery.

3rd I was told it was a nerve that was affected in my case how I don’t know. But they have gotten better. I don’t have to use my eye drops any more as often. At first it was 10, 20 or more times a day. Also the bad taste has gotten better  and  almost no dry mouth.

[wendysig]

Tamara,
I just realized too that your surgery is only a couple of days away.  I'll be thinking of you and crossing everything crossable.  You'll be in my prayers.  As Debbi said, it would be great if someone can post and let us know how you are doing too.

Wendy