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Thu Apr 06, 2017 2:52 pm

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Location: Moscow, Russia

Hi everybody!

This is my first topic on the forum. I would be very grateful if you share your experience and advice.

My right eye was removed in July 2016 and I got my first customized (glass) prothesis in February 2017. All these months I was wearing a plastic one of a smaller size than I actually need. From time to time I suffered from some irritation and secretion (I'm not sure what the correct word is). My surgeon found nothing that could cause it. Sometimes she recommended me to use antibiotic eyedrops and it helped for a while but in a week or so the symptoms appeared again. All this stuff from my socket (maybe protein, I don't know) stuck to the front surface of the prothesis, it was seen and I felt not very comfortable and had to remove it with cotton pads or sticks. But it was tolerable. I hoped I would feel and look better with a new and individual prothesis but it turned to be even worse. There is much more secretion now, it sticks to the prothesis and hurts my upper eyelid so much that it starts bleeding if I don't use smoothing eyedrops every 60 min! The ocularists first said that it was a period of adaptation and recommended their special eyedrops and liquids for cleansing and desinfection. A month and a half has passed, but the situation isn't much better now, I am just getting used to it but I believe it shouldn't be like that. The ocularists say that maybe the prothesis is too big for me but if they make a smaller one the upper eyelid will droop. The surgeon says the socket and the implant are absolutely normal and all this looks like my physiological peculiarity and I should learn to live with it. But in fact it is quite hard to live a normal life and work when I have to clean my prothesis every half an hour with all these drops, sticks, etc.

The question is if it is a usual phenomenon or the prothesis doesn't fit me?
Another question how often do you remove the prothesis and clean it?

My surgeon says I shouldn't take it out very often, once per month is ok. While the ocularists say I should do it every 1-3 days to clean and once a week put in into desinfection solution for 2-4 hours! The solution is the protein remover one for soft contact lenses. Also I use a range of eyedrops for cleaning, desinfection, smoothing and antibiotics. Fed up with it, really!

Sorry for such a long and mixed message. I hope you'll be able to help me somehow.

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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Thu Apr 06, 2017 3:34 pm

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Age: 72
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Welcome. You seem to be having a lot of difficulties adapting to the prosthesis. Did the plastic prosthesis you initially wore cause the same problems.? The secretions you are experiencing is probably excessive mucous. Sometimes a foreign body within the eye socket will cause that to happen. The prosthesis should be comfortable and nearly un-noticeable if it is the correct fit. Comfort levels should be almost immediate, but could take a few days. I think you can remove it safely every few days to clean it and give the socket a chance to rest for a couple hours.

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Left eye vision loss 2012 (accident), Enucleation 2015, Prosthesis 3/2015, another 10/2015



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Thu Apr 06, 2017 4:39 pm

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Welcome...I agree with Mike...it should feel comfortable and, basically, feel no problems with your customized prosthetic...me, myself, I would have someone else look at it, a different ocularist...I take a shower and let the warm water run over my eye...I also go every six months to have my prosthetic cleaned and polished and sometimes a little tweaking done...The less I mess with it the better...Lil

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_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Thu Apr 06, 2017 6:34 pm

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Just want to add another thought. You stated that the customized one you had made is glass. Is glass the material of choice in Russia. In most of the rest of the world, acrylic (plastic) is the standard. Glass is unforgiving in that it has to be made perfect the first time as there is no way to adjust the finished product. At least, everything I have read about glass prostheses leads me to believe that.
May I ask, why did you choose glass over acrylic, if you had a choice?

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Left eye vision loss 2012 (accident), Enucleation 2015, Prosthesis 3/2015, another 10/2015



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Thu Apr 06, 2017 10:05 pm

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Age: 32
Location: Moscow, Russia

Thanks a lot for your replies!

Mike,
My first two plastic prostheses were small and comfortable, no problems at all. 2 months after the surgery I got conjunctivitis, it was stopped by antibiotic eye drops but the mucous remained excessive. The tests showed no infection and my surgeon suspected allergy. That prosthesis was replaced with a hypoallergic plastic one. No significant changes but it was tolerable. Probably we should have replaced the post-surgery small prosthesis with a customized one much earlier because when I visited the ocularist for the first time she said that my small prosthesis irritates the socket. And it was her who recommended a glass prosthesis instead of a plastic one. She said it is better washed with tears and looks more natural. I believed her. The customized prosthesis is un-noticeable but it causes much more mucous. And I can’t understand whether it is its size that doesn’t fit me or the shape.

I visited the ocularist 2 or 3 times more with my complaints and she told that it is a common thing, many people experience it and she advised to use those lens cleansing solutions regularly. Actually I can’t believe her any more. I met a lady who used to experience the same with those glass prostheses of theirs and they told her exactly the same. When she replaced it with a plastic one of another lab, she forgot about all her problems. Now I see you are absolutely right about the material and I should do the same but first I want to make sure that the problem is about the prosthesis itself. You say, it can be caused by the reaction to a foreign body in the socket. What shall I do if it is really so?
Still I am not quite sure how often I should remove it to clean. Are your doctors over there really say, it is safe to do it every few days? The ocularists here say, it is. The surgeons say, I’d rather not as it can cause stretching of the eyelids.

Lil,
Thank you for sharing your experience! I think you are both right and I should consult another ocularist and try another prosthetic. If I have the slightest chance to get rid of discomfort, I should take it. So I will have to fly to a faraway city for a couple of weeks. That lady advised me the laboratory where they helped her.

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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Thu Apr 06, 2017 10:20 pm

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wish you the best, Lady Mary, please keep in touch...you know if there is another ocularist in the practice you should ask there first....you won't insult anyone, you are taking care of yourself and you want another opinion...then if you must travel...Lil also maybe go to the ophthalmologist they are also very good at detecting eye problems and prescribing meds for your eye socket, etc...before putting your prosthetic back in...

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4th
in size covering my retina and detached it.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 64)



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Thu Apr 06, 2017 10:27 pm

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Location: Ontario, Canada

I had never had any mucous problems until I was fitted with my prosthesis. I am on my second prosthesis and the mucous flow is still the same. I take a antihistamine once a day to help if it's allergy related. I just give it a good wipe every morning with a warm washcloth.

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Left eye vision loss 2012 (accident), Enucleation 2015, Prosthesis 3/2015, another 10/2015



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Thu Apr 06, 2017 10:30 pm

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Location: Moscow, Russia

Thanks, Lil, for your support! It's very important for me because we don't have such a community in Russia and I'm doing my best to develop it. Now I have to search for every experienced person with whom I could discuss these issues. And I'm happy I found you all!

I will keep in touch, for sure!

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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Thu Apr 06, 2017 10:34 pm

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MikePousson wrote:
I had never had any mucous problems until I was fitted with my prosthesis. I am on my second prosthesis and the mucous flow is still the same. I take a antihistamine once a day to help if it's allergy related. I just give it a good wipe every morning with a warm washcloth.


You are so lucky! I have to wipe mine every 15-30 minutes, otherwise it goes dry and hurts the upper eyelid.
Why should the washcloth be warm?

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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Fri Apr 07, 2017 8:03 am

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Welcome. While I'm not familiar with a glass prosthesis, I'm an expert at acrylic ones. I've had one since 1974! I've routinely taken it out every morning (like a contact lens), cleaned it off with a buffered isotonic solution and pop it back in. I get secretions and wear makeup so there's always some behind the prosthesis even if you remove your makeup. It works for me. I use REAL, 100% cotton to clean it with.

If it's dry at all, I carry 2 small bottles with me: one is just the eye wash, and the other is heavier, and it's mineral oil that I put in a small dropper bottle. I run a cotton swab around the prosthesis and wipe off excess and it usually helps.

Remember to keep hydrated with lots of water. It helps!!! Hope you feel better. If your secretions turn yellow or green, IMMEDIATELY call your surgeon.

_________________
~Chris~
F/56/Happily Married/enucleation 44 years ago- bb gun accident. Going to replace old implant due to severe changes in my socket. Hoping for the best, while thanking Dr. Slonim for his constant sage advice!



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Sat Apr 08, 2017 3:15 am

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I'm like Chris. I clean my every day and this has helped me with secretions. There seems to be two, very separate lines of thought, and people are very clear about what camp they are in. there are those that don't touch it, remove it, clean it, unless they absolutely have to. Then there are those of us who clean it every single day. I was originally in camp one, but like you, had excessive amounts of secretions. My ocularist recommended that I clean it every day. Since starting that, it has improved so much. I take it out, give it a good wipe down with a face cloth, put a drop of rewetting solution on it, and pop it back in.

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Left eye damaged due to parasitic infection 2007. Enucleation November 3, 2011.



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Sun Apr 09, 2017 7:09 pm

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Location: tampa, florida, usa

lady mary:
has anyone everted (flipped) your upper eyelid and checked for giant papillary conjunctivitis (gpc)? some of your symptoms are very similar. gpc has been posted elsewhere on this website. here is an excerpt from one of mine from a few years ago:

gpc is very commonly seen in extended wear contact lens wearers who sleep in their lenses. it is also seen in scleral shell and prosthesis wearers. the mechanism in the contact lens wearer is felt to be either the contact lens material itself (changing lens materials or polymers will help) or the surface proteins in the tear film that will stick to the surface of the contact lens (deposits). in either case, the plastic material or the protein deposits are the triggers (referred to as an antigen or allergen) which trigger the immune system of the palpebral (eyelid) conjunctiva to react. the goblet cells of the conjunctiva will overproduce their mucous and the conjunctival tissues will become swollen into "giant" little bumps (papules). hence, the term giant papillary conjunctivitis. the same mechanisms are associated with the prosthesis wearer. either the polymer material is the trigger or the protein deposits that stick to the prosthesis (hence the need to keep the surface free from protein deposits). some of the anti-allergy eyedrops that contain mast cell stabilizers (eg, cromolyn sodium, ketotifen, azelastine, epinastine) have been used to treat gpc. topical steroids seem to be the best treatment that we have but it may require a lifetime usage to keep the condition stable which means less mucous production, less stickiness and less prosthesis or scleral shell intolerance. some surgeons have advocated removing the prosthesis (just like they suggested not sleeping in the contact lens) at night. the theory is the less contact time between the prosthesis and the conjunctival surface of the eyelid, the less inflammation and the less gpc. gpc may be worse in persons with known seasonal allergies during their allergic seasons. that's because their immune season is already sensitive with allergies. good luck

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oculoplastic surgeon
tampa, florida



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Mon Apr 10, 2017 4:54 am

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^ Dr. Slonim is an EXCELLENT doctor, so you're getting wonderful advice here, along with other seasoned monocular people with an ocular prosthesis. I just thought of a few more things to add, since you mentioned the upper eyelid being affected:

I have seasonal allergies and my primary doctor (years ago!) suggested that I take a daily allergy pill. I switch it around, but Allegra D seems to work the best for me. When I take it, my secretions are limited and irritation is also limited.

I also **ONLY** use 100% cotton Q-tips and cotton balls on my eye. An Ocularist once told me that it makes a huge difference down the line with your very sensitive skin around the eye and the eyelids. She's right! I actually found 100% cotton cottonballs at a Dollar Tree here. Unreal. I'll be buying a bunch of them soon!

Be careful if you're using washcloths. Are they clean (no perfumed detergent?)? If you're sensitive, then make sure that everything that touches your eye is as clean as it could be. I clean my prosthesis every morning to get off any residue of makeup (that's another thing--makeup can irritate your eye).

It won't be so confusing down the line. You'll figure your body out. Watch the secretions to make sure the don't turn yellow or green (infection). If your eye is hot, or if you feel feverish, you might need a steroid ointment or eyedrop to clear it up. We hope NOT to get to that point.

cslonim: Should I call USF to make an appt with the incoming Oculoplastic Surgeon there?? I want to make sure I get in relatively soon! Thanks!!

_________________
~Chris~
F/56/Happily Married/enucleation 44 years ago- bb gun accident. Going to replace old implant due to severe changes in my socket. Hoping for the best, while thanking Dr. Slonim for his constant sage advice!



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Sat Apr 15, 2017 4:47 am

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Welcome Lady Mary, so sorry to hear of all the problems! I had a eviseration May 2016! I'm one of those that hardly ever have to take my prosthesis out! Actually I have only taken out once since I have had it and that was only because I thought I needed to! My occularist told me just forget you have it in there! And I and thankful at this point I can do that! I have no allergy problems and don't wear a lot of makeup so it works for me! I clean it every morning with baby shampoo and a clean cotton q tip! So far so good for me! I almost felt guilty for not taking it out but then why if everything is ok! I go back to my occularist in August for cleaning and polishing! I hope things will get better for you! It must be overwhelming to go through all of your issues! I would certainly get second opinion! I didn't think they made glass eyes anymore! Seems it would be heavy in your eye over time! Best wishes and I hope you get a resolution and soon!



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Mon Apr 17, 2017 9:09 am

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Hi!

Firstly, I want to say that I have a glass eye, as I can't wear plastic. My socket burns when i wear acrylic so i went to seek glass. My glass eye maker was a miracle worker, and made me the best eye ever.

I tend to take my eye out about once a month, only when i need to. It's still an uncomfortable experience for me, and i only do it when i have to. I find the socket (for me) discharges more when it's dirty or irritated. I have an antibiotic drop i always use, as my eyelid gets inflamed with GPC - form of conjuncitivits.

Hope that helps a little.

Teka

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Lost right eye in 2000.
F/35



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Wed Aug 23, 2017 6:34 am

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Dear friends,

Thank you SO MUCH for all your advice and replies! I haven’t been here for so long and I really didn’t expect so much help and support.

Since my last visit to the forum many events have happened:
- I went to Chelyabinsk to the Eye Prosthesis Laboratory and got a new plastic prosthesis of a very individual shape (if I can say so)
- I got married!
- I felt happy about my new prosthesis and appearance for a while
- And … in 2 months faced almost the same problems again!

No doubt, I feel and look much better now than I used to. The upper eyelid doesn’t hurt anymore and almost never droops. But the amount of mucous remains the same, it is rather dense and sometimes yellowish. All I can do now is to rinse my socket regularly during the day without removing the prosthesis (I rinse it with NaCl 0.9% - according to the recommendation of my new prosthetist), use topical steroid eye drops (dexamethasone) and sometimes antibiotics (Tobradex (tobramycin+dexamethasone)) to avoid yellow secretions. My surgeon says, that’s no quite good because it can cause non-response to the antibiotics. But now I can’t find the other way to cope with the problem, so I make a week break and start using antibiotics again (1-2 drops before going to bed after removing the prosthesis for cleansing). And yes, I have to do it every day because by the end of the day my discomfort increases. I wash it with baby shampoo as you advised. Once a week I put it into protein remover solution for contact lenses for 2-4 hours.

I have recently noticed something unusual in the socket, a kind of bulbs Dr. Slonim wrote about. It worried me. When I remove the prosthesis for a couple of hours, I feel much better – no mucous within this time and less bulbs. So, when I read Dr Slonim’s message about gpc, I thought it could be exactly what I had. I can't evert the eyelid by myself to see if there are bulbs and I can't go to my doctor right now because she is away on vacation. To tell the truth, I recently feel stupid and paranoic when I tell my doctors about things that worry me and hear "everything is ok, just don't touch it". As for the bulbs, I see them on the socket walls. Could gpc be located there, too? And as for removing the prosthesis at night, I thought about it but I'm not sure if it is safe for eyelids and not make them loose. Is there any risk of it?

So, I’m going to the pharmacy today to buy some of the eye-drops recommended by Dr Slonim.

I am so grateful to all of you. It comforts me when I feel helpless.

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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Wed Aug 23, 2017 11:36 am

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I received the same Tobradex warning from my surgeon. It's not to be used on a continuing basis. As far as the mucous is concerned, with some prosthesis wearers, me included, it's a fact of life. I still take a antihistamine almost on a daily basis to keep it at a minimum. As far as removing the prosthesis at night I did it on an irregular schedule, depending on how it felt when I went to bed. My socket would always feel great in the morning and the prosthesis was more comfortable throughout the day. There is concern that the socket may change shape without the prosthesis in place, but that is if it's removed for long periods of time (days or weeks).
I am not hesitant to remove mine at night if need be.

_________________
Left eye vision loss 2012 (accident), Enucleation 2015, Prosthesis 3/2015, another 10/2015



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Wed Sep 06, 2017 8:56 am

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I had a gloopy eye for years. I tried antibiotic eye drops of several sorts. Eventually everyone just said use a lubricant which of course didn't really help. Then I got a massive chest infection and had oral antibiotics for two weeks. The chest cleared up and so did the eye! I have never had a problem since. Now my eye waters a lot but it's just plain tears with no gloop.

I know that won't help everyone, I've got an immune deficiency which means I can't get rid of infections easily, but maybe some others have an undiagnosed infection.

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Enucleation 1988



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Wed Sep 20, 2017 9:10 pm

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burnt toast,

Thanks for sharing your experience!

I absolutely agree, any lubricant can't help. On the contrary, I'd rather say. The amount of mucous only increases in my case if I try to use it.

After your post I have some recollection that I had no prooblems with mucous when I had nasal antibiotics against polyps - right after my evisceration. I should check this, I suppose.

But I do have some of those nasty papules in my socket, as well.

_________________
F/1985
Right eye: uveitis 1988, glaucoma 1993, cataract 1996, numerous surgeries 1993-2000, evisceration 7/2016, the 1st customized prothesis 2/2017, 2nd customized prothesis 06/2017.
Left eye: myopia -6.5



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