Tips for various Post Op Conditions

[bikejr]

I thought I would post some things that I have learned over the past 3 years that can make some things easier when you don't have full or normal functions in some areas. Feel free to add to it.

1) Facial paralysis combined with facial numbness makes drinking tough. I always use straws, even to the point of carrying some in the car. It's like night and day to not have liquid dribbling down your chin. Just say yes to straws. I either carry one, or if say I buy a bottle of something in a convienence store, I head over to the fountain drinks area and grab a straw.

2) One sided hearing. The obvious, but plan to sit at restaurants/ball games etc so whoever you are with is on the good ear side. At say a football game once it was kind of welcome I couldn't hear out of my left ear as some guy behind me on that side was whistling loudly the whole game. I have to say that's the only time being deaf in my left ear didn't bother me. Also it helps to look at the person talking so you can see their lips move, even if you aren't really a lip reader. In meetings and such make sure it is one person talking at a time. Multiple conversations are particularily bad if you have only one ear. You have a tough time splitting out the various conversations.

3) Balance issues. I was told this was temporay and they were right. I would get out and walk everyday and work on it.  I even rode a bike a little pretty early on (perhaps too early looking back). I think at least getting out walking/looking around helps your system relearn balance when you lose one of the two vestibular nerves.

4) Double Vision. For activities like playing golf etc, I wore an eye patch. This elimiates the double vision, but you lose the binocular vision. I played golf for 3 months or so wearing the eye patch so I wouldn't see two balls on the ground to hit. It worked surprisingly well. Six months after surgery the issue resolved itself and I didn't need an eye patch anymore to play golf or do anything. After the first few weeks or so golf was really the only time I'd wear it. Normally I'd just deal with it, but if it is too much of a pain, the eye patch is always an option.

5) Facial numbness. Not really a tip to make it better, but a tip to get to the dentist more often as if you can't feel much in your mouth, you may not be brushing properly and/or may develop some teeth/mouth issues that you don't feel/notice. I went from twice a year to 3x a year post surgery and have managed to avoid having to have any dental work done since the surgery. For brushing when feeling is lacking I learned it can help to look in the mirror to make sure you are getting the right spots.  Above all get a sonic care and use it. I actually owned one previously but that was the first thing my dentist recommended if I hadn't had one already. So what if it's $100 or whatever. One extra trip to the dentist for work will cost more than that, not to mention all the fun you can have in the dentist chair as they drill you out for a root canal. 

[Angela]

It's only been 4 months since my surgery so I don't have long-term results to share.  But these are good tips for getting through the day!

1) Straws... Amen to that!  I go through them quickly at home (I got 200 of the cool bendy kind from Target, only $1).  Plus I get an extra packaged one from every fast food place.  I also carry a few everywhere, in the car, in the diaper bag, in my purse, in my desk at work, etc.

2) I put my "good" ear towards the person I want to listen to.  Sitting on my "bad" side is an insult, ha!  Minimize backgrond noise as much as possible;  I notice a big difference when the TV is off, stove fan, multiple conversations, etc.  When asleep, I put my good ear on the pillow and you know what, my husband doesn't have a snoring problem anymore!

3) Walk, walk more and walk longer.  It's still difficult for me, I'm almost sweaty by the time I get from my car to my office but my vestibular nerve gets a good workout.  I walk in different heel heights, different heel shapes, even looking pavement (it always has cracks or something to baffle me), different routes, stairs, etc.  My comfort zone is very un-comfortable.

4) Early on, I wore an eye patch because it eliminated the double vision and having to protect my eye (plus, I got sympathy from strangers).  However, I found that my depth perception was way off.  Just be careful on stairs, while driving, etc.

5) Sonicare... another Amen.  I've used it for years and my dental hygienist and DDS say that my teeth are very clean.  Chewing on my tumor side is uncoordinated at best, food doesn't taste right, and bits get lost too easily (I find them hours later, eeeww!).

Good luck--

[matti]

I am 7 years post op and I don't know what I would do without straws. I have them everywhere! It's a little tough with hot tea, but I usually enjoy a cup of that at night (no straw), no one but my hubby around to see me dribble on my chin.

The hearing issue is a daily stuggle. For a time after my surgery, I felt it too difficult to go out. It was easier to be home and not have to deal with it, but I love to be around people, so I make the best of it and let them know up front what they need to do to converse with me. Since this is not a visible disablity, people just don't understand. When I tell some people that I am deaf in one ear, I have had them stick their finger in their ear and say, "I can still hear, so you are not completely deaf". The positive for me is that I sleep on my good ear and I don't hear my husband snoring. I am going to get the BAHA device early next year. My doctor allowed me to take home a test band for a week and it was awesome.

Pre-surgery testing, my balance tested out at already having lost 86%. It is truly amazing how the body compensates. I still do run into things and my depth perception is not what I would like, but I do just fine. Still do not drive at night. My doctor told me to push myself after surgery and I am glad I did. Plus I have always kept a very positive attitude.

I also visit the dentist 3 to 4 times a year. Ditto on the Sonicare!

[Becky]

I have some left facial paralysis with synkinesis, including my left eye closure.  At night when trying to go to sleep, it is difficult because everything is relaxed except my face.  I actually feel muscle tiredness on my left face in keeping my eye closed.  This can make it difficult to fall asleep -- it's always my last struggle of the day (dealing with trying to relax my face while keeping my eye closed all the way).

I just bought an aromatherapy eye-mask type product at a general dept store.  It is cloth, goes over the eyes, has an elastic/velcro band that fastens around the head, with a minty-scented insert.  I used it for the 1st time last eve, and I found that it helped my face feel more relaxed, and kept my eye closed.  It was about $5.

I am sure there are many such products like this out there, and I just wanted to share this for anyone else in the same boat.  I am 4 out of 6 with facial paralysis per last dx.

Becky

[Pembo]

Another straw user here. My surgery was 13 months ago. I just recently mastered drinking from a water bottle with very little drip!

Another tip is chapstick. My lips are constantly dry since surgery. I always have chapstick in my pocket. I carry extras in my purse, in the car. It is my lifeline.

Lacrilube. I love this stuff. One little dab lasts for hours as opposed to the eye drops which I need hourly. After a year of constant use I don't notice the blurriness they cause except when I try to cross stitch.