Eye Problems

[HERE TINTIN]

Hi all I am quite new to all of this (forum) but I am having such a bad time with my eyes. My history is I woke up blind about 14 years ago. I had 7 surgerys after laser failed to help, but unfortunately due to diabetic retinopathy I ended up 10 years ago having an eye removed. On the plus side I had managed to retain vision in the centre of my remaining eye. My problem at the moment is about 6 weeks ago I developed ulcers all over the front of my eye and this caused a tare, now it has all healed but I have to put a lubricant in my eye for the rest of my life and this is really hindering what little sight I have left. Also during all of this I felt I had lost some more sight so I had a scan of the back of my eye and apparantly fluid is leaking from my cappileries and gathering. So I cannot see through it, the only treatment is a course of injections into my eye, but my surgeon has refused to do it as it is too risky bacause if I got an infection I could lose all of my sight. He is going to wait and if it continues once I can see nothing he will do the treatment as I will have nothing to lose. My blood vessels are all leaking water and blood,hence the kidney failure as well, all due to my diabetes. I am finding it really hard to adjust to losing a bit more sight evan though I am allready registered blind. Has anyone else had this happen to them ?

 

[Northerner]

I am sorry to hear that you have been through so much, hoping for the best possible outcome for you 🙂

 

[Redkite]

Oh Tintin I am really sorry to hear about your sight problems, what an absolute ordeal for you. Did you go through a period in your life of having very high BG levels or did this happen in spite of everything? What is the outlook for your remaining eye if you can get really good glycaemic control (I'm thinking near normal if your pancreas transplant is a success)? I really hope your sight can be saved. xx

 

[HERE TINTIN]

Thank you for your kind replies.. I am hoping that my eye regarding the fluid does not get any worse, but in honesty I guess as you can be on the transplant list for a lot of years it will continue until hopefully I have a successful transplant.

Redkite I was diagnosed at age 12 with type 1 diabetes and am now 48. I had very high bloods for a lot of years as my mother who also was a diabetic (this sounds so mad), she didnt believe in drs, insulin etc. Her idea was to ignore it and it would go away and kept me away from hospitals and actively encouraged me not to look after myself. By the time I was old enough to actually settle in one place and go to a diabetic clinic to actually get an education about diabetes *21) I guess I had stored up a lot of future complications for myself. From 21 on I was under good control and had my daughter when I was 26. Unfortunately when she was 7 is when my eyes went, followed by my kidneys 4 years ago. Apparantly the drs think it was down to as I said an unfortunate upbringing and I slipped through a net according to them. I am quite sure that would not happen these days, everyone is so much more informed and people including children are helped so much more.Once I get through a lot of tests I should get on the transplant list, and hopefully within a few years I will get the op. If it is a success *no guarantees I am afraid) I will no longer be diabetic. Meanwhile I am trying to stave off dialysis for as long as is possible. TinTin 🙂

 

[Redkite]

Thanks for sharing your story Tintin, I hope you didn't think I was being nosy. As a Mum myself of a type 1 boy I found that incredibly sad to read (not wishing to criticise your Mum here because obviously I don't know what issues she had to deal with). I would hope that clinics these days would be supportive of families and chase up those whose children weren't attending clinic, however I do know that the care from some teams is particularly bad (we ended up moving hospitals), so I suspect that even nowadays if a child has an assertive parent who goes and educates themselves about diabetes, the child will have a much better chance than one whose parents just accept what the doctor can be bothered to tell them. My son would still be languishing on twice daily mixed insulins with a high Hba1c if I'd just listened to his original team. Hopefully one day all clinic teams will be of an equal high standard 🙂

Hope your transplant comes round sooner than you think and "cures" you 🙂

P.S. Like your nickname - do you have a dog called Snowy by any chance?!!

 

[HERE TINTIN]

Hi Redkite I am surprised that in this day and age you had such problems with the diabetic team but am glad to hear you sorted things out for your son. It must be hard having a young child diagnosed with diabetes.

I am off to diabetic clinic today, though mostly I have been passed on to renal team, in fact my renal consultant does a joint clinic with diabetic one once a month so he willprobably be there as well. The diabetic dr just catches up mostly, though I have to get results of bone density scan, my bones are not so healthy. Kidney problems make you lose calcium and I have a few crumbled vertebrae in my spine, which is quite painful. I know my Hba1c is fine, it rarely changes. I have a bruised toenail, they wont be too happy about that, but I think my hubby stood on me (ouch), these things happen !

Amanda I was reading about your soups. Do you eat beetroot soup hot or cold ? I once had it but it was awful, I dont think it had been made properly. I am mad on soup ! Do you make your own fruit smoothies as well ?

P.S no dog called snowy, but I do have a keen sense of smell

 

[AJLang]

I have to confess that my soup comes in cartons - that's as fresh as I get with soup. The Beetroot soup is a Duchy of Cornwall one from Waitrose and I have it warm. If I tried to make it the kitchen would look like a scene from a nightmare, I'm very messy. My other soups are Covent Garden, Tesco Finest and Waitrose. I was thinking that they were expensive but I guess approx ?1.50 for a lovely lunch is acceptable. My fruit smoothies are the Innocent ones - I get the kids packs so that the carb counting is easy🙂

 

[itsallgood]

Crikey TinTin - what a story, I feel so sorry for you and really hope things improve in the future. I can certainly relate to some of your eye problems, being practically blind in my right eye (due to an accident aged 4, not diabetes) and I too have had corneal ulceration which is *very* painful. A few years back I had a detached retina and when they pinned it back they put silicone inside to hold it while it bonded to the back of the eye - I had to lie in the same position for a week which gave me a pressure sore on my ear

When they did a vitrectomy to remove the silicone after a couple of months it stripped away the corneal endothelium, leading to oedema and ulceration which comes and goes but hurts like mad. So I have to use a viscous type of Timoptol to keep it lubricated and lower the pressure, as I also have glaucoma in it.

Although the vision in my left eye is thankfully very good I've been told that I've developed background retinopathy in it, which is frankly terrifying me at the thought of losing my precious vision. Nothing compared to your problems though - I can really sympathise with you.

 

[HERE TINTIN]

OMG Itsallgood, I am so sorry to read about your eye problems. They are practically the same as mine just in reverse order. I also have to use a lubricant twice daily and tear drops as I have had recurrant ulcers before. My eyes dont produce any moisture (unless I cry a lot) and I have lost my reflex blink. My eye has gone numb the same as your feet do which I found out when dr poked me in the eye and I didnt evan notice !, anyway now mt brain doesnt tell my eye to produce fluid. I am sorry about the retinopathy, you must be so careful with that and glaucoma, you must be vert worried. Did they treat the odeima behind your eye ?, or have they left it alone like mine ? Really hope things go ok for you.

Amanda I think I will try Waitrose beetroot soup before I make a final judgement on it ! ?1.50 is great for lunch. I buy freshly made soup to take away in a local cafe and its just gone up to ?2.50 a go, needless to say my poor husband is making more soup at home and freezing it for me

On a serious note I wanted to let you know what happened to my mother in the end. She died when she was 56 and I was 30, she went blind and died from heart problems due to her diabetes, still not looking after it I have to say. She had been diagnosed type 1 at the age of 21 and at that time a nurse came to the house , gave her some insulin (there was only one kind) and left her to it. I guess there was no surprise she adopted the views she did but it was a shame for her and for me that that her denial of diabetes affected us both so badly. TinTin

 

[itsallgood]

TinTin, that's so sad - such tragic consequences.

My oedema is in the cornea itself, right at the front. The corneal endothelium, which got destroyed by the vitrectomy, acts like a water pump and keeps the cornea clear and semi-dry. Without that the cornea becomes waterlogged and continually ulcerates (feels like an eye full of sand). The internal pressure resulting from the glaucoma also forces water into the cornea, making it worse.

Another poster (Northerner) recently put up a link to an article about a hospital in Portsmouth who are having great success with transplant endotheliums and I've made an appointment with my doctor in the hope of getting a referral to them and an eventual endothelial transplant.

Anyway, good luck TinTin and I hope things improve for you soon.

 

[HERE TINTIN]

Hi itsallgood, I really hope your gp refers you to the hospital you want them to. Do you think it will be hard to get them to, though I would hope its not if that is the treatment you need. Has the eye clinic you attend not mentioned a transplant to you ? I hope all goes well and let me know the outcome of your visit to gp, take care TinTin

 

[itsallgood]

TinTin, yes the doctors at my own hospital referred me to a specialist at Moorfields Eye Hospital in London about 5 years ago. He did a thorough assessment and basically said an endothelial transplant is what I need but the success rate is currently low in cases like mine. There is a lot of sclerotic scar tissue encroaching on the side of the cornea and this contains blood vessels which makes things a bit tricky apparently. There is also no lens and part of the iris has been removed due to a cyst which also makes things more difficult. Hopefully the success rate has improved now though.

Despite all this I'm absolutely sure there is still useful visual potential in such a diseased eye and I'm determined to get it back. I'll never be able to read with it but I really miss the peripheral vision and find myself bumping into people and objects quite a lot which has made me very nervous when out and about. Most people don't notice I have a bad eye and just think I'm stupid, rude or drunk when I accidentally knock into them, especially down the pub 😱

All the best anyway TinTin.

 

[HERE TINTIN]

Hi itsallgood, crikey you were up early this morning ! Like you I have no peripheral vision and never will. At first I would go out alone but over the years my confidence had decreased. Now I will go out in the small village I live in as I am unlikely to bump into anyone, I am a nightmare in the supermarket or any shops come to that !. People think you are so rude when you walk into them but fortunately where I live people know me and when I walk straight past them and ignore them they are used to it. I do go out to other places but generally I am with someone and I hold onto there arm. I stagger about all over the place as the nerve damage in my feet is very bad as well, my balance is terrible, actually the best place to fit in is the pub I would say

If you were referred to Moorfields 5 years ago did they put you on a transplant list then ?, thats me being nosey again, sorry. I was just wondering if its either a very long list or at that time they thought it was too risky or didnt have the ability to do it. Like you said things come on at an amazing rate. Where is Moorfields ?, now I probably sound a real idiot, most of the population will know where it is but my geography is terrible but it must be famous as it is ringing a bell like crazy in my head ! I must say in my defence end stage renal failure does cause memory loss (this is true ,though it is a very good excuse for senior moments ) TinTin

 

[itsallgood]

Hi TinTin, I always get up early to get stuff done

Surprising how annoyed people do get when you bump into them, must be a lot worse for you though, at least I don't have any serious nerve damage - that sounds really bad, I only get like that when I've had too many 😉

Moorfields is in London. I just dug out the letter to my doctor I was copied in on and this is the gubbins of it;

"He is not a good candidate for an endothelial keratoplasty. I have discontinued carrying these out on patients like this with aphakia and large pupils. It is possible that combined with a posterior chamber lens we might maintain an air bubble in the anterior chamber but we have now had four cases in which the air bubble went behind the iris and could not be retained in the anterior chamber, leading to failure and the need for a penetrating transplant..." (goes on to talk about the cons of that) "...The failure rate is likely to be high because of the posterior synechiae and the proximity of the vascularized corneal scar."

"Techniques are improving all the time and we may have something more to offer him in another 2-3 years. I have also explained that the eye is worth looking after in case of problems with the L eye in future when the benefits of reconstructing the eye will probably outweigh the risks."

That was nearly five years ago and I'm fairly sure they wouldn't be keeping me on any kind of review list so it's up to me to try to take it forward I guess. If they say it's still a no-no then I can live with that and try again in another 5 years.

 

[Flower]

Hi TinTin, I have been down a similar route to you with eye problems.

I was diagnosed age 12 and am now 47. On my 28th birthday I woke up with no sight in my left eye and after maximum laser, a vitrectomy and lens removal I still lost my sight. About 1 year later although having agressive treatment in my right eye, I woke up with zero sight , it was the most terrifying year of my life to date!. After endless surgery I have got some central vision in my right eye but no peripheral vision or sight in low light, dark or bright sun. I too walk past friends, walk into doors, if out on my own I follow the edge of buildings to keep me in a straight line! I think the word complication really doesn't come close to the impact it has on your life, more like devastation. Losing my driving licence and job because of it seemed insignificant.

Any slight change in the precious vision remaining worries me so much, at present the oedema in my eye is improving. I hope very much that the situation improves for you. It would be great to forget the carnage for an hour or so but unfortunately it is the first thing you see in the morning.

I wish you all the very best for the ongoing treatment, it is good to hear from others in a similar situation. I want to scream when people say to me, "why dont you buy some new glasses or try contact lenses", oh if only it was that simple. Good luck.

 

[HERE TINTIN]

Hi Flower your story is so similar to mine , I guess eye problems do follow a pattern when it is down to diabetes. When they removed my right eye I think it really took me 5 years before I could look at people and not be thinking their staring at my artificial eye ! Now so many people look at me and have no idea I am even blind let alone only have one eye I am more relaxed. You have odeima as well, has it affected your vision or have you had treatment for it ? It must be very hard to lose your job and be unable to drive, it would be very hard to come to terms with. I had only started to learn to drive when I went blind, so I never had the chance to miss it. I had also stopped working when my daughter was born . Though I had planned to return to work but couldnt as other complications hit in as well, and I kind of regret not working again. Most of my friends are older (I love older people !!!) as to be frank most people my age do work.Do you have other complications as I do ? Can you read with reading glasses ?. I can sometimes I use a magnifier as well. I have just ordered bifocal sunglasses for my holidays, but I am not sure they will be of any use. Take care TinTin

That sounds so complicated itsallgood ! I cannot believe how much they can do for eyes, its pretty amazing. It will be great if they can help you this time round, good luck🙂. Do you get around ok ?, I know you are having problems with your other eye as well, how are they treating you at the eye clinic ? I never try to see daylight before erm 8ish to say 10ish, , I am afraid that old nutshell CKD makes you very tired all of the time. There are a long list of horrible symptoms of kidney failure (or I am plain old lazy, hard to tell) Speak soon TinTin

 

[itsallgood]

TinTin, I get around ok with the occasional bump

I've been driving for 30 years and never had an accident as a result of being blind on my right side (touch wood) and it's never held me back at work. Can't shoot a rifle though, not that I'd want to. My problems rather pale into insignificance compared to others.

Really sorry to hear your problems Flower, sounds awful. Having all that surgery with so little success much be very frustrating. Waking up blind must be so frightening, it was one of my biggest fears when I was first diagnosed and still haunts me now, especially after they told me I had background retinopathy in my good eye. One can only hope that continual advances in science and technology will bring you benefits in the future.

Good luck to you both.