Hi all my name is Philip Cooper i am 22 years old. I had a work related accident when i was 18 where i got caustic soder solution in both eye. My right eye made a full recovery but left eye did not to say the least. I have had 3 amniotic membrane graphs on it to try and reduce the scarring but my eye lids top and bottom stuck together. I then went round loads of hospitals to see if anyone would operate to seperate them so i could get a cosmetic shell fitted. One eye doctor then said yes and he done a mucous membrane graph which in involved removing skin from your lips and graphing them in your eye. This worked a grate deal but my top eye lid scarred down a little in top right corner. I still managed to get a cosmetic shell in ad wore it for 12 months but it was uncomfey because of the scaring so i then had the operation repeated and all the scarring has gone between my eye lids and eye. I am currently waiting to get a new shell made but over the past week i have got a slight pain in the back of my eye. My eye is soft and has shrunk a bit. Does this mean this pain will stay or can your eye go back strong and this will possibly pass.

I've no idea mate but welcome to the board Sorry to hear about your accident

I'm sure someone will have an answer for you soon enough though

Andy

Philip-

The technical term for a soft eye is "hypotony." My doc told me it causes some pain. For me, it caused a great deal of pain. In my case they couldn't get the eye to regenerate its own fluid, although I know it is possible. Perhaps it might be for you. I have had great problems with pain since my initial staph (MRSA) infection in my left eye in FEB '06. I was not well informed and was inpatient and had it eviscerated. I am now being referred to Johns Hopkins because I continue to have pain. I have found that docs still know little about pain. If you continue to have pain and you can't get pain control, make sure you see a pain clinic. Uncontrolled pain can cause your nerves to continue to misfire long after your initial injury is repaired.

Good luck to you...

If it does start regenerating can the eye go back to a normal size or doe it just stay smaller but with no pain.

Also when the eye shrinks is the pain caused by squashing parts of the inside of the eye.

I never got a good answer from my doc on that one -- "why does a soft eye hurt?" I must have asked him a hundred times!! Not sure about pain if the fluid regenerates either -- it would make sense that the pain would go away, but I really don't know. Have they told you that your eye would continue to get smaller? Is it much smaller now?

They have told me they are not sure if it will continue to get smaller, but said it is very soft.

Not sure how much smaller is it it makes my lid droop a bit and if you lift the lid up and look at it, it is further back.

When you say a pain clinic do they now more about pain in eyes than eye Doctors?

when you get the eye eviscerated can you still wear a cosmetic shell and the eye moves?

Let me clarify -- your eye docs should be the experts about the hypotony, your eye getting smaller, and should know that it will cause some pain. However, if you are in pain for a long period of time, or if you feel your doctor is not managing your pain, you are better served by going to a pain specialist or a pain clinic. Not all healthcare providers know how to treat pain. Pain specialists are experts in pain management -- left untreated, pain can be harmful to your body. You mentioned you originially had the accident over 3 years ago and are experiencing pain. However, if you are doing well with your doc -- there is no reason to add another doc to your bills!

I am a member of the American Pain Foundation. They have lots of info at their website: http://www.painfoundation.org

As far as evisceration, you can have the eye contents eviscerated and keep the muscles intact so that you can have a prosthetic than placed on top (nothing holding it in place!) and it moves naturally with your muscles. You can pop the prosthetic in and out. It is apparently the best cosmetic option.

i live in UK and all treatment is getting paid for privately as it was works fault. I have only just started to get pain in the eye the last week.

Just getting me worried and thought i try and find out what possibilities it could be.

Thought it was the end of the line or is so just wanted to prepare myself.

Philip - where abouts in the UK are you?

Do you have any remaining sight in this eye?

It sounds like your are describing Pthisis Bulbi, which is the softening and shrinking of an eye, which can happen after an injury or as a result of inflammation.

Hypotony is abnormally low pressure within the eye (normal IOP is 10-22mmHg) a Hypotonous eye has a pressure of Below 10, and below 5 is normally when the big problems occur. Again, Hypotony can occur as a result of Surgery or Injury. It is most often seen in patients who have had Glaucoma Surgery.

As for pain within the eye, there are a number of possible reasons.
-Chronically Low Pressure can for example lead to folds in the choriod and retina, which would be painful.
-Inflammation within the eye (Uveitis) causes severe pain (been there done that!)
-Neuropathic Pain describes pain that is coming from a nerve pathway, and it too can be severely painful and difficult to treat.

It depends on the duration, intensity and location of your pain and the history associated with your eye to really work out what is causing it. (questions to address are like, Is the pain sharp, dull, boring, aching etc, is it deep or on the surface, does it wake your from sleep, is it when you enter a dark room/go outdoors etc)


As for if your eye can "become strong" again, that too depends on what has caused the low pressure/shrinkage in the first place. For a traumatically injured eye the answer is normally no, but it really does depend.

Anyways, hope some of that helps. Feel free to ask anything!

All the Best,


Elizabeth.

The pain is sometimes dull and sometimes a ache in the back of my eye. It is in light and dark and is not really waking me up from my sleep.

I had a operation 10 weeks ago. My eye was really soft in the first place could that last operation to make my shell fit 100 percent comfy could the op of made my eye worse.?

Could the pain just go by itself?
If not what are options and chances of them working?
When this happens is it likely to cause problems in the future?

from Liverpool by the way.

Well Philip, I dont purport to be a Physician... but I'll tell you from experience mate, if your eye has no useful sight - i.e. It is a blind, shrunken, painful eye.... Have it out.

There is no point in messing about with prostheses, medication, pain, discomfort and infection for an eye that will never see again... so go for an enucleation would be my advice.

If, however, they think they can get you some meaningful sight back in the eye, then you need to get the pressure issues addressed, and see what can be done - that is, if it is low pressure that is causing the pain in the first place.

If it is just shrinking because it is blind then there isnt really anything that can be done.

I know this all sounds real harsh, and there will be others on here who may say hang on to it for as long as poss, but I know what Ive been through, and if all pain&pressure crap starts up in my eye again, Im having it out, end of!


Why dont you see if you can get referred to Moorfields? If you are having it all paid for then you may as well get to the best in the country, so Moorfields/A Private Ophthalmologist in Harley Street would be the way to go.

It is the first bit of pain i have had in the eye and i done it 4 years ago. It is only a slight pain surely they should be able to do something.

Is your eye pressure ok now?
How long did you have pain in it for?

They cant check my pressure properly as my cornea is opaque.

I dont expect to get any vision in the eye but want it to look as natural as possible with a shell.

Can you reccomend any doctors in Moorfields.?

Ahh fair play, sure I thought this was a brand new injury.

Well, my advice would be to head back to the Ophtho who did your surgery 10 weeks ago and have a chat with them. They will be able to tell you if there is anything going on inside your eye to cause inflammatory pain etc (even if your cornea is opaque, you can have a B-Scan)

This is very technical, but I'll post it for you anyway:

http://archopht.ama-assn.org/cgi/content/full/117/1/123

Its from a journal - the Archives of Ophthalmology, and describes a patient with a very similar story to you: "In this report, we describe a patient with a chemical burn that led to a shrunken eye, no palpable intraocular pressure, an opaque cornea (due in part to the direct effect of the alkali), and an attached retina, who regained substantial vision following keratoprosthesis surgery and was followed up for 1 year."


So, like I said before, if is Pthisis Bulbi, and the eye is blind, usually there is no real hope - but this article shows that that isnt always the case.

As for my pressure, its well controlled now thanks, but with regard to the pain, I get pain in it at some point every day. I just havent had the severe severe pain I was having with flares of Uveitis, touch wood!

With regards to the shell - I wear a cosmetic contact lens I had made in Moorfields, and its quite comfortable (though I had a lot of teething problems)
I dont think I could recommend any of the Dr's there for you because it is so specialised, and the Docs I see probably would have much to do with your case.
However, you could ask whoever you are seeing now for the specific Ophthalmic Specialist that you should be under and take it from there.

How long did it take them to make your shell from the day they done the mold?

Do you know why the eye shrinks when its blind and how much can it actually shrink.

I read that yesterday lol

What happened to your eye if you dont mind me asking.?

If my eye has shrunk a bit which it has wouldnt that mean it has got or did have Pthisis Bulbi at one stage?

Yep, I think from what you are describing your have Pthisis.

As for how it happens, I dont want to get into all the details, cuz its a bit hardcore! lol.
But, basically, you understand that cells in the body need oxygen and nutrients to survive, ok, so this happens because blood carries the oxygen and energy to the cell, and carbon dioxide and waste away from it.
In the eye, the fluid called Aqueous Humour takes the role of the blood, and it does the transportation side of things.

So, In a damaged eye, the Aqueous Humour can either cease to be produced, or its production is vastly reduced. This means that the eye is starved of nutrients. The cornea and the lens are usually the first areas to become affected, and so they become distorted, and usually appear opaque.
This has a knock on effect on the structures in the back of the eye, which become oedematous, or swollen. And on it goes. The structures in the eye then eventually collapse, and the ocular volume can be reduced to half its normal volume. - Hence the shrinking.

Did you read it? Cool, that was weird, huh! lol.

My eye - haaa, where to begin! lol. The abriged version - I had a nerve problem with it since birth, I developed Double Vision, and so had lots of surgery to try and correct it.
I had an opaque intraocular lens implanted in it, and as a result of that developed Uveitis and all sorts of other nastiness! lol.
It has taken about 3 years to finally get to the point where I am not popping Diclofenac every day to keep the pain at bay!

As for the shell/lens - it takes about 6 weeks for the whole thing to get done, but that could be different depending on where you are I guess.

I actually should have qualified as a nurse at the start of this month, but because I had 6 months off for surgery etc, I wont get my PIN until March 08, and then they'll let me loose on a ward! lol.


Anyways, I hope some of my ramblings have been helpful?

ttys,


Elizabeth.

Hi Phillip; welcome to the group; I agree whole heartedly with Liz; I had cancer in my left eye; had sucessful treatment but the eye was blind; years later I had glaucoma twice and other things went wrong with it and the PAIN was unberable 24/7; the last op didnt work then eye began to shrivel so I had it removed; like Liz says there was no point in having no quality of life to keep a blind eye; the relief was enormous; but everyone is different and it is a difficult decision with lots of emotions attached to it; Good luck with your decisions; cheers Vera

Does anyone know if anyone with ptisis has had it cured and eye grows or once it has shrunk it has shrunk.

Thanks for info its really helpful by the way!

I understand what you are all saying i am prepaing myself if i have to have it removed but i have worked hard to get this shell fitted and am waiting to get it done asap. If it is possible to have this little dull ache sorted and wear a cosmetic shell i gonna go down that route. Hope that doesnt sound nasty lol

If eye does become even more painful and they cant treat it i will have it removed.

Has anyone ever been on maxitrol?

Do artificial tears have nutrients for the eye?

Do them alcohol blockers do anything for pain if the Aqueous Humour is not renewing or can they do stuff to make it start renewing.?

I had a horrible reaction to the alcohol blocker. I had another month or two before I was to see the surgeon to decide when to have my eye removed. They thought the blocker would be a temporary relief solution. I wish I never got it! My eye lid stayed shut for 1 1/2 months, not only did it deaden the nerves for pain, but deadened a lot of the muscle movements as well! We didn't know if I would ever open my eye lid again. The side of my face was well swollen for a few weeks. People wondered if someone popped me a real good one, but I didn't have the regular standard bruise pattern. Now I have a sunken/hollow eye socket from having the blocker. Yeah, my pain was bad that I would wake up in the middle of the night. Pressure was bad due to blood vessels growing in the eye. They gave me a variety of glaucoma drops and atropine, it only helped a little. To feel that alcohol be injected in your eye....oh man.....having the removal surgery was MUCH less painful! That's when the real pain stopped!!! I don't regret having my eye removed one bit. The blocker helped the pain thogh, but to get it and "thinking" it was helping....the removal surgery was way better! I do have reactions to many things, so I'm weird. You might be ok with it, but please do your research well...I thought a blocker was a better solution; for me it wasn't.

Christy