Need advice on tarsorrhaphy please

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juxtapoze1

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Joined
Mar 24, 2018
Messages
5
Reason
CALS
Diagnosis
10/2012
Country
US
State
ca
City
rancho palos verdes
Hello,
I am my mom's caregiver. She was diagnosed in 2012 and is now at this point fully disabled. We used to be able to communicate when she could use her eyes, but that was over a year ago. Unfortunately she can't close her left eye at all and she wears protective goggles and ointment 24/7, but her left eye has still gotten some scarring. What I need advice with is on wether she should get a partial or total tarsorrhaphy on her eye. Having her eyelid sewn at least partially shut would help stop any further damage and since I don't think she has any real vision with that eye I think I won't be taking away one of her senses. Although the procedure is apparently simple and reversible, I don't want to expose her to a (possibly unnecessary?) risk of infection or complications. Even with the procedure, she will most likely have to still wear goggles unless her eye is completely sewn shut. I'm really struggling with making this decision for her, she's always been so independent. I'm leaning towards leaving 'well enough' alone. Does anyone on this forum have experience with eye issues and/or tarsorrhaphy? Any advice would be greatly appreciated!
 
Very sorry to hear about your mom.

If her sleep schedule is regular (i.e. she does not doze or take naps), you could possibly insert scleral contact lenses while she is awake to protect from further damage. When she is asleep, you could tape impregnated gauze over her eye to avoid goggle pressure.

Is she in pain? The real issue is what is and is not a problem for her.

Is she on BiPAP?

Best,
Laurie
 
Thanks for your reply! She is on a ventilator through her trachea. I'm not really sure when she is napping or when she's awake since she can't close her eyes. Unfortunately I don't know what level of pain or discomfort her eyes are giving her because we can no longer communicate. (I'm looking into AACs that use brainwaves.) I am leaning towards just keeping the goggles on 24/7. we have a dark pair for nighttime and a clear set for the daytime, in case she wants light.
 
I was also going to ask about gently taping the eye closed during the night.
 
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We started by taping her eye closed but actually the goggles work better since mostly her right eyelid is usually pulling open and the tape is rough on her skin when used on a daily basis.
Unfortunately there is no way for her to communicate anymore and I hope we can get our hands on those EEG devices.
Personally I would be horrified to be in that locked-in position so I understand your question. Nearly every new doctor or nurse we see asks about this and wants to make sure we have a polst in place. When my mom was beginning to develop this disease and was still able to communicate she was adamantly full code. In fact she ordered her own trachea and peg tube surgeries and educated me on how to care for her. Now, I don't know if her wishes have changed but I have to respect her previous wishes as I knew them to be.
 
Our eyes are designed to lubricate themselves through constant blinking that distributes the tear layer, as you know. If you stay with the goggles, I would certainly use "severe dryness" gel-type lubricating drops on her eyes often as possible, or a prescription gel at intervals, because the goggles cannot provide that.

At night, since you won't be able to do that as often, I presume (don't know your caregiving setup), it would be a kindness to use something like impregnated gauze under the tape-- again, possibly a gel type for more durability. I am not familiar with the options available, but a palliative care specialist or ophthalmologist should be.

I agree with trying all other options rather than surgery.
 
Oh yes definitely! We use an eye wash and eye ointment called Lubrifresh twice a day along with the goggles (I forgot to mention that.) We'll definitely look into the impregnated gauze and hold off of the tarsorrhaphy. Thanks for all your help!! <3
 
If her right eye still functions As far as communication my tobii has the ability to use a single eye for calibration and speech generation. HTH,
Brad
 
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