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Thu Nov 02, 2017 3:16 am

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Joined: Wed Jun 20, 2012 3:07 pm
Posts: 276
Age: 53

Hi Everyone!

About 5 yrs ago I joined this board when I became monocular after complications from detached retina surgery. The people on this board were not only informative, but also warmly supportive.

Anyway, I spent the last 5 yrs trying to avoid the inevitable. I had a painful, shrunken eye. It had changed from brown to blue with zero measurable pressure. Although it was painful and unsightly, my fear kept me from pursuing a surgical solution. I tried to ignore the pain, which in hindsight was emotionally exhausting and not a healthy choice...though I had my reasons, one of which was being conscious during the end of my initial detached retina surgery. Fear stinks.

About 9 months ago, I could no longer deal with the stress the eye was giving me. I got to the point where I knew it was time. With the loving support of family and friends, I had my enucleation 2 days ago...Monday around 11am. It's about 10pm on Wed., and I felt compelled to share my experience with the hope it helps someone else who struggles with making 'the decision'.

First, the selection of a doctor was not a smooth one for me. I won't bore you with the details, but I was very lucky to eventually find an ASOPRS fellowship surgeon at the University of Illinois -Chicago hospital.

The day of surgery went smoothly. I was home in my own bed around 4pm. I remember feeling unexpectedly calm the morning of surgery. The hospital personal were kind and I appreciated the way things were communicated to me and my husband. When I woke up in recovery, I was surprised that I felt eye pain...silly, but for some reason I had expected to be pain free until the surgery pain blockers wore off. I was also extremely sleepy. I remember receiving some pain medicine intravenously before being wheeled to the car. I slept almost continuously until the next day (9am)....only waking to snack and take pain medicine (my mouth was really dry and my throat was sore from the general anesthesia...fortunately no nausea)....and I alternated between ibuprofen and acetaminophen every 3 hours...nothing stronger. Now I'm weaning myself off the ibuprofen and just taking acetaminophen every 6 hrs.

Oh and we took the pressure patch off about 24 hrs after the surgery, as instructed. The eye looked better than I expected, but a few hrs later my eye showed signs of swelling and oozing so I started to use a cold pack (20 mins on, 20 mins off). The lid has also started to show some more discoloration (purple), but all in all, things seem good at this point.

My follow-up appt is next week so my job now is to take it easy and heal. I'm taking the acetaminophen, an antibiotic and applying an eye ointment. And I forgot to mention it but my doctor sewed my lid shut (I have two little white pieces of tape) and will keep it in for up to 3 weeks, I believe. Right now, it doesn't bother me at all.

I'll update again after my post- op visit. Many thanks to all who contribute to this community. I wish good things for us all.

_________________
Janice 53/F lost vision in left eye 05/25/12 after retinal detachment surgery
Enucleation 10/30/17

Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present. (from Kung Fu Panda)



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Thu Nov 02, 2017 11:46 am

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Joined: Mon Sep 03, 2012 9:43 pm
Posts: 1132
Age: 72
Location: Ontario, Canada

Hi Janice. We both joined this place about the same time. I had my vision loss in the summer of 2012. This site was and still is a good place to help with trying to figure out “what happens next”. You lasted almost 3 years longer with your eye in place than I did. I just didn’t have the staying power. I had mine taken out Jan ‘15. Life began again shortly thereafter.
You’ll heal and all will be better. Now, everything about that ordeal is just an afterthought.
Good luck with your post op and prosthesis fitting. All of that is just a piece of cake
Mike

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



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Thu Nov 02, 2017 2:25 pm

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Joined: Tue Aug 24, 2010 10:23 pm
Posts: 430
Location: New Orleans

The worst is over, physically and emotionally. You will quickly learn not to make any rapid eye movements. It hurts. The swelling and discomfort will subside over the next few days, and you will start to feel and look a lot more normal.

When I lost my eye about six years ago I had not yet found this site. It would have been a great comfort to have known that others had been down the same road and were living normal lives.

There are most likely other out there who will read your story and know that they are not alone.

Keep us posted on your progress.

_________________
M 71. Enucleation 7/10/2010 following uncontrolled fungal infection.


In the land of the blind, a one-eyed man is king.
Erasmus



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Thu Nov 02, 2017 7:51 pm

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Joined: Thu Sep 08, 2016 1:24 am
Posts: 50

Hi Janice:

Thank you for sharing your story. Wishing you a speedy recovery!

Take care

Stacy

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M/49
Partial vision in left eye due to meningioma



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Sun Nov 05, 2017 3:01 am

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Joined: Wed Jun 20, 2012 3:07 pm
Posts: 276
Age: 53

Thanks for the good wishes. Yes, I remember you, Mike. It's so good to hear how well you are doing. You said you "didn't have the staying power", but I see you as being braver. My fears held me back for a long time. I'm feeling much better now that the procedure is done and I 'just' have to continue following the doctor's orders.

The caring support this message board provided me in my darkest moments will forever stay with me. There are a lot of very special people here. Knowing you aren't alone and that with time you can live your life with one's new normal was comforting. I still repeat the gentle message of "baby steps" with every adversity that life throws at me...and I'm not just talking about my eye. I'm so grateful.

Anyway on to my updateate: Enucleation was Monday, today's Saturday and I ventured out to the mall with my husband for a walk. (It was rainy and walking outside as I did on Thurs. and Fri. wasn't going to work. Funny thing, I learned I'm a 'heavy' walker so I'm trying to do more of a glide step. Haha.). I wore sunglasses in the mall to hide my eye. I was a little self conscious at first but it was a non-event....no strange stares....just walked the mall 3 times and then went home.

In a nutshell, I feel very good. The pain is more soreness than pain...if that makes sense. I actually have periods that I feel pain-free. Yay!! The swelling is negligible, so I'm not icing it any more. The eye is unsightly. I was told not to wipe or rub the eye so with the salve and the little bit of oozing it looks, for lack of a better word, yucky. The eye has a little bit of purple bruising, the skin around the eye is still yellow-ish due to the iodine....or whatever they use to sterilize the area....and of course I still have the 2 small pieces of white tape holding the stitches keeping my eyelid closed.

As for meds, my husband applies the salve twice daily for me. The only medicine I'm taking besides the prescribed antibiotic is acetaminophen. The first 3 nights my husband set a timer so I stayed on top of the pain....we alternated between ibuprofen and acetaminophen. Now I take Acetaminophen before bed and just take the next dose whenever I get up. Frankly, I'm not sure I actually need a pain killer anymore, but I feel better when I get some exercise....and remember I'm a heavy walker. I may take it a couple of more days, so I can do longer walks. The mall walk was about 5,000 steps.

First post-op doctor apt is Tuesday. I'll update again Tues. or Wed.

Thanks again to everyone. :)

_________________
Janice 53/F lost vision in left eye 05/25/12 after retinal detachment surgery
Enucleation 10/30/17

Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present. (from Kung Fu Panda)



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Sun Nov 05, 2017 12:36 pm

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Hi Janice, sounds like you are doing great...after I had my enucleation, my surgeon told me just to stay inside on my couch, with that huge eye patch and watch TV and not to lift anything heavy...after five, days I had to go back to my surgeon for him to take my eye patch off and had to take the train to him, with my husband, and everyone was so nice, on the train to me giving me a seat...so glad you are doing well and it only gets better...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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Sun Nov 05, 2017 4:35 pm

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Joined: Tue Aug 24, 2010 10:23 pm
Posts: 430
Location: New Orleans

Tell the surgeon about Losteye. Mine had ever heard of it until I told him what a great resource it is.

Same with the ocularist will will eventually visit. Mine had heard of it but had no idea what it was.

They can both spread the word.

_________________
M 71. Enucleation 7/10/2010 following uncontrolled fungal infection.


In the land of the blind, a one-eyed man is king.
Erasmus



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Wed Nov 08, 2017 4:15 am

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Joined: Wed Jun 20, 2012 3:07 pm
Posts: 276
Age: 53

^^^I wish I had seen this before my appt today. I've written myself a post-it note and placed it on my eye care folder which I take with me on doctor visits, so I'll be sure to mention this wonderful community/message board at my next appointment.

Today went well. Yay! Everything checked out fine. Due to Thanksgiving and my doctor's out-of-town commitments I'll have to be extra patient for the stitches removal. It isn't uncomfortable now...just hope it doesn't begin to itch or anything as time passes.

I stopped taking acetaminophen and finished my antibiotics yesterday, so all I have to do is put a dab of the salve on the stitches once per day until the tube is empty....just wish the tape holding the stitches was beige! It would be so less noticeable. :)

The pain is gone (yay again!!)…just low level soreness at times (like bumpy car movements), that I hope eventually goes completely away as the socket heals. My energy level is okay....though I admit the hour drive to and from my follow-up appt, coupled with a couple of stops made me more tired than I expected. I was cautioned to take it easy for another week...no exertion...and I will follow the doctor's orders and just continue low intensity walking.

Lastly, the oozing has stopped and the only thing coming from the eye is occasional tearing, which he told me is fine. So patience until the week after Thanksgiving, when the stitches are taken out. Then a week later I'll visit the ocularist. Yep, that's the next hurdle in my mind...baby steps.

Thanks again. Sending good wishes to all.

_________________
Janice 53/F lost vision in left eye 05/25/12 after retinal detachment surgery
Enucleation 10/30/17

Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present. (from Kung Fu Panda)



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Wed Nov 08, 2017 4:45 am

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Joined: Sat Jun 28, 2008 9:28 pm
Posts: 10364
Age: 83
Location: Near Vancouver B.C.

Yay for you Janice, all sounds as though it is going as scheduled, so pleased to hear this is now behind you.

_________________
F/ Amblyopia, intra-ocular lens both eyes, cornea transplant, blind in L/Eye due to retinal detachment.Glaucoma. Capsulotomy seeing eye.
Seek someone who communicates with you in laughter for laughter can turn a sad day into a joyful one.



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Wed Nov 08, 2017 11:46 am

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Joined: Mon Jan 05, 2015 3:10 pm
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Sounds good, Janice...I say until the stitches are out take it slow...walks are good in the Mall...but still be careful of people banging into you or you into them..I hope you are wear polycarbonate glasses to protect your good eye...and believe me no one is looking at your tape or eye...I was in the store the other day and I slightly banged into a woman and she said oh I thought I was invisible and I said sorry, no you are not invisible, I can't see out of my right eye, she said I understand my husband also has a problem, too☺

_________________
_____________________
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)


Last edited by Lil on Thu Nov 16, 2017 12:14 am, edited 1 time in total.


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Thu Nov 09, 2017 7:21 am

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Joined: Tue Jun 24, 2003 2:36 pm
Posts: 819
Age: 57
Location: USA

Janice: Glad you're doing well. Prayers for a quick, good recovery. You should be feeling much better shortly!

As a sidenote, I'd love it if we could all state what type of implant we all got, since I'm about to replace my 42 year old implant soon. I'm getting a small silicone sphere, covered with my own fat from my tummy. Hope this is the norm....... Take care of yourself and don't put pressure on your head!

_________________
~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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Thu Nov 16, 2017 12:06 am

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Joined: Wed Jun 20, 2012 3:07 pm
Posts: 276
Age: 53

First of all, thanks, Moby!! I remember your kind words of encouragement when I first visited this board. You and many others here are amazing!! Blessings to everyone.

No worries, Lil. Since I've been monocular for years I already know how to be cautious in crowds and to always wear my glasses to protect the "good" eye. However, the reminder is still appreciated. :)

Chris: I need to ask for specifics about my orbital implant at my next follow-up appointment. When I met with my surgeon he asked what was important to me. My main desire was to get rid of my painful, blind eye. I had been living with a shrunken, discolored eye and I'm of the age where the cosmetics was/is less important. Any improvement would be appreciated. My main goal was/is reclaiming my quality of life as much as possible.

I believe he said he preferred acrylic implants because they've been used a long time with less complications. I'm qualifying the statement because all I clearly remember is that he had a preference due to his experience. I think he mentioned he was seeing too many patients experiencing issues with a certain type....and from this board I knew I didn't want a peg. Anyway, I felt my surgeon understood my priorities and I trusted his judgment....he has great credentials and a wonderful aura of confidence and kindness.

Chris, I hope your procedure goes well. You've been so patient. Wishing you a great outcome!!
---------------------------------
Update: Feeling good. I'm doing low intensity walking on a treadmill now that it has gotten cold here.

The only time I feel a little 'yucky' is when I'm a passenger in the car....maybe my husband needs to learn to drive 'smoother'.…haha.

Anyway, I am grateful there is no pain. The only other thing I can think of sharing at this time is that the eye will water at times. The most difficult thing associated with that is the strong desire to wipe/rub my eye. Since I have the stitches in, I have been told not to touch the eye. The eye doesn't itch, but 'not being able to do something' makes it all the more appealing...if you know what I mean. My friend said I'm lucky I don't have to wear a dog's cone of shame...that made me laugh. I'll also mention, I don't wear a patch when I'm out and about....just sunglasses. I do wear a sterile patch at night so I don't accidentally rub it. Well, I guess that's it for now. :)

_________________
Janice 53/F lost vision in left eye 05/25/12 after retinal detachment surgery
Enucleation 10/30/17

Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present. (from Kung Fu Panda)



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Thu Nov 16, 2017 12:55 am

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So happy for you, Janice, you sound great, too..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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Fri Dec 08, 2017 4:05 am

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Joined: Wed Jun 20, 2012 3:07 pm
Posts: 276
Age: 53

Another update: A week ago I got the stitches out. It felt good, because it reduced the desire to rub my eye. Also, my surgeon was happy with my socket...yay!!

The only downside was I had grown used to the 'stitches' look, white tape and all. Seeing the socket through the clear conformer was more difficult for me. When the stitches were there it looked like I may have had some kind of lid surgery. I wasn't self-conscious about it.

With the socket visible I felt like I had to be more careful when running errands. My sunglasses aren't very dark. I require a prescription progressive lens so I couldn't just pick up and wear a dark pair of glasses from a store.

Fortunately I only had to wait a week for my ocularist appointment, which was today!! I am happy to report that the appointment went well.

My ocularist fit me with a temporary prosthetic that I'm happy with...amazing really, since I had been living with an unsightly, shrunken, discolored eye for 5 years. His process has me wearing this fitted temporary eye for 2 more weeks. My socket will continue to heal and my eyelids will get used to this larger 'conformer'. It was very comfortable most of the day, but as I approach the 10 hour mark, I do feel a little fatigue. I will follow the directions I was given for twice a day, in-the-eye prosthetic cleaning.

So in two weeks I will be fitted for my customized prosthetic. It won't be my last appointment, because the finishing touches will be done at the third appointment a week later.

I feel very lucky so far. First my surgeon, and now my ocularist, have made me comfortable throughout this journey. They are skilled, confident and kind. And that last one, kindness, has helped me more than I expected. Life is good. :)

_________________
Janice 53/F lost vision in left eye 05/25/12 after retinal detachment surgery
Enucleation 10/30/17

Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present. (from Kung Fu Panda)



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Fri Dec 08, 2017 2:29 pm

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Janice how wonderful for you, finally, all will be done yay...yes some tweaking...of your customized prosthesis might be needed...it should feel like you have nothing in meaning very comfortable..also let it settle after and adjust...meaning get use to the way it looks in your socket, then if something doesn't look or "feel" right, then it can be fixed...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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Fri Dec 08, 2017 3:49 pm

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Joined: Tue Aug 24, 2010 10:23 pm
Posts: 430
Location: New Orleans

The last hurdle will be the actual fitting of your new "eye." It will be a long day, mostly spent waiting for the prosthetic to be created. There are a few steps in that process, the most amazing being watching the ocularist paint the new eye. He will use a palette of oil paints to match the real one. When he finally pops it in you will be delighted with the match, and how well it looks and moves.

You will probably look a little "bug-eyed" at first. It takes a few weeks for the prosthetic to settle in to the socket. After that, you will go back to the ocularist to have the prosthesis cleaned and polished. That takes about 15 minutes.

I went through this about six years ago, but it seems like yesterday.

_________________
M 71. Enucleation 7/10/2010 following uncontrolled fungal infection.


In the land of the blind, a one-eyed man is king.
Erasmus



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Fri Dec 08, 2017 7:13 pm

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For me they measured one day and saw what color to match my other eye.....then after they made and painted my prosthetic I had to go back for the fitting, so no waiting around for me...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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