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**Rebecca Petris** · 29-Mar-2011, 09:13

Have you ever had bandage soft contact lenses? I understand it would be more complex with a carer inserting and removing them, but the reason I'm asking is whether you have any experience with temporary relief from lenses.

You sound like you could benefit from scleral lenses as shields for the corneas if the practical challenges of getting fitted for them could be overcome. I don't know if this is a current email address but you could try contacting Don Ezekiel at dfezek@gelflex.com.

**Juliette** · 30-Mar-2011, 19:51

Dear [edited]

Thank you so much for your kind words and suggestions.

Luckily for me I already follow your dietary advice! However, some of your diet suggestions e.g. Wild Salmon Oil etc are new to me and I will try them.

I glad that your tarsorrhaphy worked well for you. I�m not sure if mine did or not. My DES has gotten increasingly worse since a few months after my second stroke (and the tarsorrhaphy was done early in the saga).

Now to the cause of my DES. I have asked numerous ophthalmic specialists, my ophthalmic surgeon, my neuro-ophthalmologist AND my endocrinologist. No one could tell me what the cause is. I suspect they do not know exactly what the cause is.

How ever, the brainstem (where I had my haemorrhages) houses most of the cranial nerves which play a role in almost all functions of the body.

I know that 2 (of the 12 pairs) of cranial nerves open and close the eye lids (one opens and one closes). The cranial nerve called the Facial Nerve (Cranial Nerve No. 7) is responsible for secreting the aqueous part of the moisture in the eyes (the doctors could not tell me about the other two components of eye moisture and seemed quite amazed that a quad could be asking such complex medical questions! Mind you I do have a Health Science Degree and a particular interest in cranial nerve [for obvious reasons]).

So, I�m not sure if my problem is because the eye lids do not close properly and moisture is not produced and/or moisture is not secreted.

Exercise, Unfortunately one or more of my disabilities tends to rule this out largely e.g. arm exercises � my left arm is completely paraysed, my right arm works but I have a torn shoulder tendon and my shoulder joint replacements (both shoulders) really restrict my movement and shoulder strength etc.

But thank you for your other suggestions as well and I will look at the link that you suggested.

Thank you, again for your kind words, thoughts, advice and suggestions.

**Juliette** · 30-Mar-2011, 19:55

Dear Rebecca

Dear Rebecca,

No, I have not tried bandage soft contact lenses.

My doctors have ruled out me using contact lenses because of my reduced corneal sensation (the concern is that if I get an infection or other problems I will not know about it because I can�t feel it until it is very severe).

I also thought that I could benefit from using scleral lenses and did give my eye doctors information about the Boston Sight Foundation but they haven�t said anything about this being useful for me.

Do you know of anywhere in Eastern Australia (I�m not allowed to fly to middle or west Australia because of medical reasons. Can�t fly further East than New Zealand either!)

Thankyou for giving me the contact information. Do you know if it is Australian email address?

Thanks for your suggestions and information � much appreciated.

**bvendig** · 31-Mar-2011, 06:39

other solution

hi
i can only add a few things to your list
1. fish oil supplements
2. a LOT of water each day
3. Oasis Tears Plus
4. Warm compresses & lid scrubs twice a day
5. i have 3 punctal plugs and you're right, you have to have them checked periodically cause they can fall out.
betty

Originally posted by Juliette View Post

As mentioned in my registration, I am a 43 year old lady, living in Sydney (Blue Mountains) Australia I have physical and sensory disabilities and I have the worst case of severe dry eye that I have ever heard or read about.

My neuro-ophthalmologist and my ophthalmic surgeon have said that there is nothing else that can be done to improve my situation.

I hope that they are wrong and that somebody here can help me. (And many thanks to anyone who tries :-) ).

I have included below some information about my situation.

My disabilities include:

� quadriplegia (following two brainstem haemorrhages [
type of stroke] one at age 21 and the other at age 36)
� partially blind in one eye
� completely deaf in one ear, hearing impaired in the other
� Severe Dry Eye Syndrome (both eyes)
� double vision
� bilateral shoulder replacements
� bilateral hip replacements

Current Situation

Gold weights in both upper eyelids
tarsorrhaphy outside corner of right eyelid
punctal plugs (inserted over a year ago and probably only one there now)

Photosensitivity - I cannot look at anything white for more than a few seconds without it causing me severe glare �overdoses� making it impossible for me to see any other colours properly for the next few hours/half a day (depending on the severity of my condition, which is variable).

Just daylight causes problems too. On some days when I am particularly light/glare sensitive, I have all curtains closed, wear eyepatch R eye and sunglasses.

severely dry eyes

eyelids do not close fully

reduced corneal sensation (both eyes)

Air conditioning dries my eyes out to the point where I can not see clearly within a few minutes or even seconds (depending on how high the air conditioning is set) of coming into contact with it.

This means that I am pretty much allergic to the 21st century! There are just so many places that I cannot go (or can go for a short time and expect very blurry vision), eg shopping centre, restaurant, travelling (trains, aeroplanes etc are air-conditioned), theatre, doctors office, hospital, and my nursing home (have to stay in 1 non-air-conditioned room for the three weeks I am there [ every 4 months] as the rest of the nursing home is air-conditioned) etc.

Ceiling/desk fans are almost as problematic as air-conditioning.

Even going outside is a huge problem and many things I cannot do very often (even when the air is completely still my eyes dry out within two or three minutes). This restricts me from going to places such as the Zoo, markets, outdoor sports/entertainment, my own garden!

For every three hours during the day carers have to administer (GenTeal) eye gel (and this leaves me with blurry vision for at least 15 minutes). Every night I have Lacrilube coating both eyeballs and one of my eyes taped closed. Every morning someone (usually my husband, Bob) has to take the tape off, wipe the Lacrilube away and administer my first 3 hourly dose of eye gel.

Previously tried:

Panoptyx goggles/glasses (no good to me because I regularly and frequently has to "blink" my eyelids manually and am unable to take off and put back on the goggles in order to do this)
Onyx night eye goggles (no good to me because the goggles did not stay in place whilst I was asleep)

**Juliette** · 31-Mar-2011, 20:24

PS (dear Rebecca)

Thought I'd better clarify a couple of things.

Although my doctors do not recommend contact lenses for me, I would still like to try scleral lenses if possible.

I would rather find somewhere (where I can get scleral lenses) in the Sydney area of Australia rather than having to fly to other areas and states of eastern Australian

hope this makes more sense!

**Juliette** · 31-Mar-2011, 20:30

re other solution

Thank you for your suggestions

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