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Fri Feb 10, 2017 12:23 am

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I went back to the ocularist in December; my implant has been exposed and they're making a new vaulted prosthesis for me next week, in hopes that it'll make less contact with the implant and therefore put off implant replacement surgery a while longer. In the meantime, I'm tired of wearing an eyepatch and nervous about the cost because my insurance is no longer covering my prosthesis.

When I was diagnosed with glaucoma in 1994, the first signs I noticed was severe migraines centered in my left eye. I still get migraines, usually still in the left eye socket. In the past two weeks, I've had two REALLY bad throwing-up-from-pain-all-day-long migraines in BOTH eyes, and it's freaking me out pretty badly. I'm terrified that this is a precursor to glaucoma in my good eye. And I know that glaucoma doesn't HAVE to be a blindness sentence, but with my past results... it's hard to be optimistic that it would be easily treatable.

I'm just so stressed and angry at my eyes and afraid of what's happening next.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Fri Feb 10, 2017 4:51 am

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Sounds like you are having a rough go of it at this time. Sorry to hear that. Did you have any kind of a history of migraines before the glaucoma diagnosis. When my wife gets a migraine, it's so intense that she can't pinpoint an area that it's coming from. I do hope you can get some relief with that situation. I've never had what I would consider a migraine, but being in the same house with a sufferer, I do feel for you.

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



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Fri Feb 10, 2017 9:26 am

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so sorry for your pain and stress, the deal, did you hear about using botox for migraines? I heard that is the latest thing? Please check it out if you can...Feel better soon...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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Fri Feb 10, 2017 12:08 pm

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Age: 49
Location: Northeast Georgia

Thoughts and prayers headed your way! I know how it is to be frustrated/angry/afraid. After seven months, the battle for eye dominance is still a daily problem. My bad eye used to be dominant and doesn't want to give up the fight. So, it "overrides" vision in the good eye with its bad (none, actually) vision. I never know exactly how my eyes will behave from one day to the next. Depth perception has to be relearned almost every day. The issues change but not to something better or worse, just different.

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"Freedom is just another word for nothin' left to lose"



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Fri Feb 10, 2017 10:03 pm

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So sorry to hear you are going through this.

Have you gone to have your IOP measured? Do you know what your baseline is? Do you have any field of vision testing on file? I would recommend going. If its high, you can start drops. If its not, you have one less thing to stress about.

It sounds like you are in the middle of a very stressful situation, before even worrying about the other eye. I would bet this is the source of your migraines. Also, based on your photo it is hard to judge your age. I didn't get migraines until I hit 41. Then, due the major spikes in hormones throughout the month, I am now well acquainted. Unfortunately, almost every migraine medication increases eye pressure, so there isn't much to be done if glaucoma is an existing concern. I have had some success in holding them off by adding magnesium to my diet, but I still get at least one a month. I have an abortive, essentially a wham-o pain med.

Please find some time to get to an eye doctor to check your pressure as well as find some time for yourself doing something that relieves your stress. Worrying about the exposed implant, the new prosthesis, the cost and time associated with both is a heck of a lot to deal with.

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



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Mon Feb 13, 2017 12:52 am

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Thank you all for your replies - it's been a busy past few days and I'm just now making it back!

MikePousson: I had migraines all the time as a child, but they weren't pinpointed specifically to one place (my left eye) until I was about 14. I've continued to have migraine-like phantom pain in my left eye socket ever since, but the ones localized to my right eye are new - I've only had a few like that ever before.

Lil: I tried Botox for my migraines back in... 2011, I think? I had to fight with my insurance for more than three years to get them to approve it. I didn't find that the Botox helped very much - maybe very slightly, but not enough to want to go through the pain and cost of it on a regular basis. A lot of my migraine pain is phantom pain in my left eye socket, so not as easy to treat as a regular migraine (and I don't know that ANY migraines are easy to treat)!

LS2729: That must be an awful struggle - my right eye has always been the dominant one since I had cataracts in my left eye as a baby, but I sympathize. Losing depth perception when my left eye was removed was really hard to deal with.

Chemgal: I haven't been back to have my IOP measured since last summer. Honestly, I'm a little afraid to - because if the pressure is elevated, I know I'll panic even more. As it is, my insurance is not covering the new prosthesis I'm having made this week and they will not cover another eye exam until August. I'm going to contest them not covering the prosthesis (more than $3000 out-of-pocket) so I'm hesitant to press them to cover another eye exam too. I'm 36 but I've had migraines since childhood - not localized to my left eye until I was about 14, and only a few localized to my good eye until the past month or so. I take Maxalt as well as Imitrex for migraines, but even those haven't been very helpful lately.

Thank you all for your thoughts and well-wishes - all of this is stressful and I'm having a hard time coping with everything right now.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Mon Feb 13, 2017 12:59 am

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hang in there the deal...I know you are thinking. "easy for me to say" but I do wish you well and pain-free, too...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 Feb 16, 2017 1:17 am

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Thank you, Lil! It does help to hear that from those who have been there too.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Thu Feb 16, 2017 1:31 am

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take care the deal and keep in touch...xo 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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Sun Mar 19, 2017 7:15 pm

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Hello:

Sorry you are dealing with some issues. Regarding the migraines, my wife has those and has been successfully treated with Botox. It did take a few treatments before it became effective for her. Sounds like you have been down that path, and not sure how many treatments you went through, but it may be worth trying again. Ends up it is the only thing that works for her and she has tried just about everything.

Good luck!

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Partial vision in left eye due to meningioma



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Tue Mar 21, 2017 3:33 pm

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Age: 57
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the_deal: I'm sorry. I FULLY understand and am compassionate for what you're going through. Some days I wake up and just don't want to think about or deal with my whole eye situation, but it's there and I have to figure it all out. It does suck most times. I'm so sorry. I wish you strength and fortitude to go forth and handle this all head on. Sometimes it takes a very strong person for us to be our own advocate. This website certainly does help in some ways. 40 years ago I had no such thing, so I fully appreciate even hearing feedback from other monocular people going through hardship regarding their situation. I wish you the best and pray for your strength.

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~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 22, 2017 2:47 am

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Thank you all for your support - Chris, you're right, it helps just knowing that we're not alone!

I got my new prosthesis in February. It looks great but hasn't been totally comfortable. It was uncomfortable one night last week so I took it out and found an eyelash behind it. Removed the eyelash, replaced the prosthesis, irritated again right away. I took it back out, and this time the backside was bloody when it came out. I was leaving on a trip the next day, so I freaked out for a minute then blocked it out of my mind.

It's really irritated again tonight, so I took it out when I got home from work. There's a fresh, BIG new granuloma - and it's bleeding again. The granuloma definitely wasn't there in late February. I feel like crying. (Also, just to be petty, it's my birthday and a granuloma is NOT what I asked for!)

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Sat Apr 22, 2017 10:41 am

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Age: 72
Location: Ontario, Canada

It seems you're having a devil of a time with the granulomas. Losing an eye is bad enough, but when all these other things are thrown at you, it's disheartening. Best of luck. And also, a belated happy birthday. We all most share the same date.

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



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Mon Apr 24, 2017 1:42 am

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Thank you, Mike!

I'm going to call my ocularist in the morning. I'm scheduled to go in June for them to check the fit, so I'll see what they think my next step needs to be. The implant is exposed in a couple of places and we hoped that the new prosthesis would minimize the exposure problems, but it looks like that's not working out. I feel like I've just been putting off an inevitable replacement of the implant and that's going to have to happen sooner than I'd like.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Mon Apr 24, 2017 1:49 am

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yes, the-deal, see what the next step will be to help your problem and then make a decision on what you should do next...wishing you the best outcome...xo Lil

_________________
_____________________
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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Mon Apr 24, 2017 12:04 pm

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I know the doctor can answer this much better than myself, but it would really concern me if there was implant exposure behind the prosthesis for any length of time. It would seem like a pathway for an infection to begin inside the socket. That was the main reason I didn't consider a peg poking through the implant covering.
It seems to me that losing the eye is just the beginning of ones problems. The maintenance and care of the aftermath it just as worrisome.

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



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Mon May 08, 2017 12:09 am

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Mike, you're exactly right - dealing with it can either be much simpler than people would expect or WAY more complicated, depending on how the eye socket is behaving!

I'm having this granuloma removed on Thursday and then going back to the ocularist in June for them to take a look at the socket. This granuloma has grown a lot faster than the past few and that makes me uneasy.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Thu May 11, 2017 1:40 am

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I've had the blood show up on many occasions. Usually it's pink in color, and mine has come from allergens, makeup, implant issues, etc., and infections. If I see it more than once, I call my doctor (ha! If I HAVE a doctor!!) or my ocularist. Make sure it's not an infection and that the prosthesis is sitting just right.

I can relate about ALL of the issues. I've been there. My eyelashes aren't mine. My eyelid isn't the natural eyelid; it's made from the skin/membrane from the back of my ear (in the 1970's!!). I'm complicated. Some of us are. Keep reminding yourself that you're okay and you're healthy. Take it 1 step at a time and figure out how to keep infections and bleeding at bay. I wish you the best!

_________________
~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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Mon May 15, 2017 12:03 am

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Everything is a pain.

The granuloma was not removed on Thursday. The doctor said that the granuloma is too large, and the implant is exposed underneath, and "everything will come apart" if he tried to remove it and cauterize it as before. He wants to take a graft from my lip to cover the space left by the granuloma, and that would require actual surgery under anesthesia. It can't happen until May 31.

My ocularist does not agree that this is the right step to take next. She wants me to see a specialist at Duke, and the soonest I can see that specialist (right now) is September.

Also, the doctor I saw last week is in-network for me in his office, but he does not have hospital privileges at any in-network hospitals. I'm already fighting a $3000+ battle with my insurance over the out-of-network prosthesis I had made in February. I do not want to fight this battle too, especially when my ocularist is not on board with the graft happening. The ocularist thinks we need to be pursuing having the implant replaced, and the doctor I saw last week said that's "way, way down on the list of options right now."

I have no idea what to do next, and the granuloma is continuing to bleed on and off, and Tobradex seems to be doing next to nothing to help the problem. I'm so defeated and frustrated and fed up.

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36 years old - left eye removed 12/96 due to glaucoma and congenital cataracts



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Mon May 15, 2017 10:42 am

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I am so sorry you are going through all this. If I could I would give you a hug, make you some tea, pick you some of my daffodils, and listen. My situation is so much less complicated than yours and I find it frustrating and hard. I can't imagine how you cope with yours. You are " one tough cookie" as my mother would say. I will keep you in my thoughts.

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69 yo female
Retinal detachment x2 in right eye Sept. 2014 repaired with vitrectomy, gas bubble, scleral buckle, laser, etc. Cataract removal right eye, May 2015. Chronic cystoid macular edema right eye.



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