Hello all
I am a new member here from the UK, glad I found the site.
I will explain my situation and I wanted to ask if anyone has been in a similar situation.
I was infected by parasite at age of 4 in 1977. This left me with little vision in my right eye. I can read about 4 letters on the chart. It was contained within the right eye and my left eye is fine, healthy. I have had 5 operations so far for increased pressure in the eye. None of them have worked and I am on drops. I also have chronic pan-uveitis in that eye since 2009. This is now painful and not responding to steroids or immunosuppresants. My lens keeps getting stuck to the iris.
I am really starting to feel that I would have a better quality of life with a prosthetic eye rather than being in pain and taking drugs like prednisone for the rest of my life which have horrible side effects including eye problems. So I am anxious about my good eye being affected by the drugs.
I am not sure when the doctors reach the point where they agree to remove the eye. I know it normally has to be blind and painful. So I am not sure if they would agree in my case as I do have a little vision. However, I walk around and drive with my bad eye shut most of the time as it is painful or gives me a bit of double vision. So I feel that life with only one eye would not visually have much of an impact for me.
Just wondered what people's thoughts are or if someone is in a similar situation.
I feel my painful eye is now stopping me from enjoying life.
Thank you for listening

Welcome to LE Jayne,

You are in a difficult place...I was completely blind in my bad eye, and the decision to have the eye removed was still hard to make, but life has been much more normal with the prosthetic.
If you still see letters on the eye chart and the eye is not too fussy (painful) or within a level of pain management you may want to think hard about keeping it. We just never know if something will happen to the good eye, and having the bad one for backup is a consideration.
I wish you well on your search for an answer. This is a very good place to voice your thoughts and concerns. A very good group of people with lots of experiences to share with you.
All the best,
Lorry

I only had to tolerate pain for about two months between my infection and my enucleation, but it made my life miserable. I had even less vision in the infected eye than you do, and very little chance of recovering vision. After three months of drops, shots, pills and three surgeries, we finally threw in the towel.

My first thought when I woke up from the surgery was, "The pain is gone!" I had some disconfort for a few days, wore a patch for two months until I was ready to visit the ocularist, and now have a prosthesis that matches the good eye and has excellent movement.

My only regret is that I didn't get the enucleation sooner.

It's a tough decision to make, but you will find a lot of empathy and understanding folks here.

I lived with pain for too long. One reason was I had some vision, but like you it sounds like the small amout of vision isn't a benefit to your daily life.
The past 3 years have been the worst for daily pain. I am just over two weeks post op. I had an eviceration of the problem eye. I am so happy! The healing pains have been nothing compared to what I was living with.
My pressure after surgery #4 was averaging 48. With drops, prednisone, and methazolamide pills which have alot of bad side effects there was no decrease in pressure or discomfort. Then after surgery #5 and a second stent implantation pressure along with 2nd cornea my pressure was 0, they wanted to wait watch then they had idea to put a stitch on one of my stents, however that is when I put my foot down and said NO NO no. The 2nd cornea was failing and pressure couldnt be controlled and I had pain every day.
I had lost most of the usable vision at this point due to cornea failing...couldnt see through it. FOR ME it was still a difficult decision Im 41, girl, nurse, and mom. THe nurse won Because I thought of the advise I give my patients" Quality of Life" .....I caint give that advise and not take it for myself. For me it was the right decision. I have to wait six more weeks for prosthetic eye. I will post a pic of finished product. I wish you all the best this is a great network to find out answers. Reading about other people helped answer questions my doctor could not answer.

Hello Jayne; Im so sorry you are in pain, but glad you found LostEye because the people here will help you a great deal. I had a Viral infection in my right eye and suffered a lot of the same misery that you have been. The first year was the surgeries and treatment with high doses of pred, the second year was just misery. I could see a little out of the right side of the eye, but only shapes. I made the decision to have my eye removed, not the doctors. The day I went in and told them it was time, they were all on board and set up the surgery right away. It was a horrible thing to decide, but just over 10 weeks later I am pain free, have a good looking new eye and finally I can move on with my life. I am still trying to get off of the prednisone, that will take another 8-12 months they say. I wish you the best of luck and keep us posted. Jill

Pain really does wear a person down. The fact that you still have some vision in the eye does make the decision more difficult. If the eye is viable to save I can see not having it removed. If it will continue to deteriorate and eventually you will lose site in it any way then I'd be all over having it taken out. I would tell the doctors to explain your options and what they see as possible outcomes. Living in constant pain should not be an acceptable outcome.

I began having pain in my eye last July. December 6 of last year I had an evisceration of that eye. 2 weeks after the surgery I was in less pain than before. Now I am pain free. The thing is that since the surgery I have not had any headaches, I've had only a slight cold once and my normal seasonal allergies seem to bother me much less. If I had known that the eye was actually causing me any of those problems I'd have begged to have it removed long ago. I was told by many doctors over the years that it was not the cause. They were wrong.

Hi Janey and welcome to LE; great caring supportive people live here. It is a hard decision to make; but when you have no quality of life due to constant pain and you're living around and making decisions on bad eye days; then it is time to think about removal. I know what you mean about the serious drugs you will have to take (been there done all that) and the side effects can be horrendous. I would see a specialist in enucleation/evisceration and get all the information possible and weigh up how to proceed. I wish you courage and strength and peace of mind with the decision. cheers vera

Thank you all so much for your friendly and informative replies. It is great to be in contact with people who can empathise and are so positive.
As suggested, I am going to ask my consultants what they feel will happen with my eye, if it will end up losing all vision, if I will require more operations etc. I have a strong feeling that they will not consider the removal of the eye at the moment. But this may change in the future. I will keep you all updated and wish you all the best in the meantime.

Hi and welcome to the site,
Yes it is a hard decision to make. Sometimes the doctors wait to hear the patient say I can't stand this pain anymore can we talk about surgery. I was in pain and had surgeries and meds for over 35 years. When the top doctor said it's time to have the surgery to remove the eye I still took 2 yrs. to say yes. For me, looking back I had so much misery I sure wish I could have known the relief and joy I would have after surgery.
I was also told to ask the doctor(s) if this was your wife husband child what would you advise?
We are here for you. Keep coming back to let us know how things are going for you. Trudy

One matter you should be prepared to deal with is that doctors are mainly concerned with medical issues and offer little if anything in the way of counselling. The one who removed my eye did an excellent job, and I had a relatively pain-free recovery, but I had no clue what living with one eye would be like, or how to cope with it.

Fortunately, one of my kids found Losteye while I was home recovering, and started reading to me some of the posts by LE members. That was very encouraging. The message I got was "Maybe this won't be so bad after all." LE provided the tips, tricks, advice and encouragement I needed, but never got from any of the doctors who treated me.

I had no choice other than enucleation because there was fear that the infection would spread, and there was only about a three month period between the time the infection set in and the enucleation.

To update
My right eye deteroriated rapidly a couple of weeks ago. The pressure was uncontrolled following PI Laser and CycloDiode surgery. I felt so ill. The doctors then said my eye was basically 'knackered' and I could hardly see a hand being waved in front of it inches away. They then said I could either have one more major operation that probably would not work or have evisceration. I went with evisceration. I had this done on 1st June. Had post op pain and sickness for a couple of days but now a week on, already feel happier over what has happened, hopefully no more drugs or pain.
I am a little scared of seeing my conformer tomorrow when the dressing comes off, and also of having ball implant surgery in 6 weeks. I am looking forward to just getting my prosthetic eye.
Could someone tell me what is involved in the ball implant surgery. Also, I still have a little pain around the eye socket. I know its early days stlll, but will this pain eventually go completely or will there always be a slight discomfort around the eye?
Also, does anyone live near London, England? I am soooo eager to meet someone with a prosthetic eye but dont know where to start looking thanks! Any other advice gratefully received
Thanks for your replies!

Hi Janey, another big welcome to LE - as you have found out, there is
so much care and help on this site a great bunch of people. It's good to hear
you are on the road to being pain free. We are quite a big world wide family so you
may well hear from someone your side of the world. I had my eye & lid removed ( so
it was a different op ). I posted some pics on this site, which shows just how
good your eye can look.
warmest and good healing wishes to you - keep posting your progress. Sally

Hi Jaynejones,

There is also a FB group and many memberS there are from the UK so you could get to meet someone who has a prosthetic eye to reassure you.
The group is called Eyedentity UK. I know theY had a photo shoot back in March and a lady in that group organized a meeting between friends.