New to this.....eye advice?

[Ashes07]

Hello!  My husband was diagnosed with a right AN (4.5 cm in diameter) in March of this year......unknowing to him he was diagnosed at age 15 and this thing as been growing for 14 years (started at 2mm), but that's a long, rough story that I don't want to get into.  He was also diagnosed with a paralyzed left vocal fold the same month (unrelated).  The months and days leading up to surgery were difficult as our surgeons were preparing us for the serious complications of the procedure paralyzing the right vocal fold and were prepping us for the very significant possibility that my husband would need a tracheostomy and PEG tube.  Surgery for removal was on July 19th and was a huge success!!!!  Our wonderful surgical team was able to remove the entire tumor, keeping all of the cranial nerves intact and therefore maintaining function of his only working vocal fold.  Aside from having right facial paralysis, he is asymptomatic - mild headaches, no balance issues as the system has been compensating for so long.  No voice or swallowing problems. 

We are truly blessed and fortunate.....so why do I need to vent? 

We are home after only 6 days in the hospital (2 in the ICU and 4 on the neuro floor) and I am having a hard time getting him to comply and cooperate with the care needed to keep his right eye lubricated (eye drops, ointment, taping in shut when he sleeps, our surgeons recommended against an eye patch unless we are outside).  We have not seen an eye specialist yet - he is able to about half blink the eye and our surgeons said that it was not yet necessary.  He says that everything we do for his eye is uncomfortable - gauze, paper tape, drops, ointment.....yada yada yada.  Does anyone have any tricks that they have used and have worked to keep the eye lubricated and yet comfortable??   I'm doing the best I can but he's so resistive to everything I try and will be cruel when I push the subject - yelling at me, etc.  I know this is hard for him, the facial paralysis is uncomfortable, the shock of going through a 9 hour craniotomy is difficult, he's exhausted and just doesn't feel well, so I'm trying not to take it personally, but that's hard too.  Thanks in advance for any advice!!!

[Jim Scott]

Hi ~

I just wanted to offer you my welcome to the ANA discussion forums.  I regret that I cannot offer any suggestions for helping you to maintain the necessary aid for your husband's affected eye but I'm confident that many others that post here will be glad to share their advice/suggestions with you.  Just keep checking this thread. 

I can relate to your husband's post-op cranky disposition because I was the same way.  No real issues other than fatigue but I was very resistant to my loving wife's attempts to help me in any way.  The physical toll from the surgery is definitely a factor but in my case (and perhaps your husband's) I resented the (temporary) loss of my independence (that I'd always taken for granted being blessed with lifelong good health).  Now that I was home and past the surgery I wanted to assert my independence and 'get my life back', as I often put it.  My sweet wife was just trying to help me but I viewed her ministrations as an impediment to my regaining independence.  She was very stressed out by my adverse reactions and feared that if I remained this way our (then) 36-year marriage might be in jeopardy.  Fortunately, as I recovered (rather quickly) my amiable disposition returned and things got back to normal for us.  My wife still recalls that period as very upsetting for her and I've apologized numerous times for my grouchy behavior, then.  That was six years ago and we've agreed not to keep re-visiting that period.

My suggestion is to do what you can for your husband's eye needs but try to have patience with him because he is having an emotional struggle of his own right now and arguing won't help.  My best advice is to remember that things won't always be this way.  They'll get better.  Honest. 

Jim   

[alabamajane]

hi ,
Sorry to hear about your husband's issues,, but having just had surgery 9 mos ago and having facial paralysis and some eye issues, I can relate some to how he is probably feeling. And as Jim says,, the surgery has a huge emotional impact on us also,, and probably men have independence issues.. but...
I have an eye weight in my eyelid which helps it close .. so I may be more comfortable than he. You may try different eyedrops some are thicker than others and will inpact his ability to see clearly therefore perhaps making it more uncomfortable. I have used Refresh brand, mostly the PM at night, although I find it thick and hard to focus after using, but since I am going to sleep, it does not bother me too much until morning and then I wash it out. Systane is another brand I use, it is not as thick but still helps both at night and daytime. I have not had to use drops too often during the day unless outside or in retail stores.. there are many brands out there and maybe changing would help if he will at least try them. I don't have to use tape to close mine either so can't address that...
I imagine he is just having a difficult time adjusting to changes in his life right now. I know the facial paralysis was/is very hard to adjust and deal with.. so he may just need some time .. but I know my neurosurgeon stressed that eye care even with the weight was very important because you do not want to get an eye infection or scratch the cornea by not using drops,, so maybe a slight reminder of those issues would help him see need for eye care,, he will have real issues if he lets eye get injured and then sight is compromised... I am not a Dr. just relaying what I have been told about my eye..
ALL of this does get better with some time and patience is VERY hard to develop if you don't have much to begin with,, and I did not.. give him all the love and care he will allow and then step back and let him ask for what he needs help with for now.. after he has  had some time to "absorb" all that has happened to him, he will "come around" I am sure.. It is also difficult on the caregivers as I am sure you are finding out.. best of luck to you both and hang in there... he needs you now and in the future and as Jim said,, he will realize that as time goes on,, he is just having a hard time adjusting right now.. IT will get better as time goes on... prayers and best wishes,,, Jane

[nancyann]

Hi there, I have facial paralysis for 6 years - i suggest going to an ophthalmologist ASAP. The most important issue is keeping his eye moist & avoiding a corneal ulcer. I use Refresh PM exclusively - it will make his vision blurry but it is worth it for the time being. I also use a moisture chamber every night for sleep - you can make one using saran wrap, cut the piece enough to cover all around his eye, over his eyebrows, then tape it up - you're making a greenhouse effect. Because my paralysis is permanent, I buy a moisture chamber called NITEYE, the moisture Bubble, put out by Beaver - it's pricey but worth it, I buy it buy the carton but you can buy it by the box (14 to a box, unsterile). Lucky for me I haven't had a corneal ulcer in 6 years due to my diligence in keeping my eye moist. Hope this helps. Always good thoughts, Nancy

[wwarr]

    Welcome to the forum.  I'm glad you found us.  First of all, I wanted to say to you Thank You for the care your giving your husband right now and for being there for him when he needs you. I know he appreciates you so much.  What a supportive wife!! I know it is not an easy time for you both.   I know he is going through a lot physically as well as coping emotionally.  There are many changes and it takes time so just be patient with him.  Being a man, it must be hard with his independence.  He is used to caring for you.  Being a caregiver is hard too!  There are many adjustments to make and you are trying to do things in his best interest. Make sure that you are getting your rest too and taking care of your needs.  That is so important!  In the meantime, eye care is so important.  In my recovery, I used refresh drops for dry eye.  I didn't need anything further but the above suggestions are helpful. 
    I wish you the very best and will be praying for you both.  Time heals and it will get better!
Take Care,
Wendy

   

[thisisajourney]

Maybe a blikeze you need the eye doctor to prescribe one and it comes out of pocket about 100 dollars. It helps.