One hell to another ; plz help.

[Niaz 47]

I am 26 year old struggling with acute myeloid leukemia for two years. 85days post Stem cell transplant. Stem cell transplant caused eye gvhd. Now I have severe dry, gritty, painful eye with heavy eye lid. I can't do regular activities. I often close my eyes and lay down. It is like a jumping one hell to another. I went to a eye specialist who gave me refresh tears, genteal gel, prednisolone and cyclosporin eye drops. My Schirmer test result 2/4.drops are working only for about 15mins and genteal gel only for hour. I can't even sleep at night. I get up every two hours with heavy, gritty eyelid and have to put gel or drops. Also have sensitivity to light and air. Open air often causes burning and red eyes. I don't know what to do. Is eye dryness or gvhd reversible? Is Punctal plug any good options for me. There are any medications or options for me? Plz help me. I can't suffer anymore.

[littlemermaid]

Niaz ~ welcome and so sorry to hear about your pain. Which country do you live in? Is your ophthalmologist in a hospital specialist eye clinic? There will be more options for you. Are you able to go back to the Eye clinic to talk about punctal plugs? Do they know you are still suffering and can't sleep?

[Niaz 47]

Niaz ~ welcome and so sorry to hear about your pain. Which country do you live in? Is your ophthalmologist in a hospital specialist eye clinic? There will be more options for you. Are you able to go back to the Eye clinic to talk about punctal plugs? Do they know you are still suffering and can't sleep?

I am now living in India. My Dr know about my problems and gave me a option of Punctal occulsion. I don't know it will be helpful or not. My parents scared of any surgery in my current condition. We are looking for a good option. I don't know any specialized eye hospital in India for dry eyes.

[littlemermaid]

option of Punctal occulsion. I don't know it will be helpful or not.

Anyone with GVHD got punctal plugs?

My teenage daughter had plugs in the lower puncta and they were great at keeping more tear film on the eye surface. Her eyes looked much better for the year she had them, I thought. A tear drain got infected so the eye doc took them out, which was easy. We cleared the infection with fluoroquinolone antibiotic eyedrops. Maybe that's the worst that could happen.

The paediatric ophthalmologist put them in for her easily although it stung a bit - this doc uses them for very young children, even babies, so I'm not thinking of punctal plugs as surgery.

Are you far away from LV Prasad?

[Niaz 47]

I don’t know anyone had severe dry eye/gvhd like me. Iam now in Kolkata. Where is LV Prasad s clinic? If you know plz help me. Is there any chance of improve of my eyes?

[littlemermaid]

Anyone from Kolkata, India? Urgent

Niaz ~ yes, it's all about managing your eyes to make you comfortable.

Maybe send a personal message to Hirentherock http://www.dryeyezone.com/talk/membe...6-hirentherock - he has seen ophthalmologists in some of the big eye centres around India, and had difficult surgeries, and uses bandage contact lenses 'scleral lenses'. His condition is different to yours but if he is still using this website, he would be a good kind person for you to talk to about managing the eyes and doctors.

I think if it was me I would go back to the Ophthalmologists you have got and insist on more help. And if they say they've done what they can, I would ask them the questions you are thinking - can I see doctors more specialised, and what are the treatments to help me get more comfortable?

It is useful to make a 'Diary' of what this is like for you. This helps the docs understand and is quicker than trying to explain in detail and is more like the science they want. Include exact impact on your life and sleep eg 'woken by pain 2am, put in 2 drops, tried to sleep till 4am...', and rate pain 1 to 10.

Meanwhile, here's the All India Ophthalmological Society list of local eye societies http://www.aios.org/importantlinks.asp When my daughter's eyes got bad, I emailed ophthalmologists at the big hospital eye clinics and they recommended a good doctor nearer home experienced in the problems. And this worked out much better for us on getting current treatments. Yes, they are very busy doctors but with one I got a reply in 3m, but he did reply. One replied same day and recommended the doc we have had now 4y.

Search 'LV Prasad Eye' if you want to know more about that eye hospital in Hyderabad and who works there. But, of course, there are other regional hospitals where the same doctors work. I think they are calling them Regional Institutes of Ophthalmology http://npcb.nic.in/writereaddata/mai...le/file247.pdf.

I think it's most important that your eye doctors are very kind and you know that they are doing their best for you. I know it's a family decision but it would be good if you personally were able talk to medics about your comfort.

You are most welcome here with us. Hopefully people with experience will join your thread.

Are your eyes dry on the computer? Are you using your phone? It's really important that you protect your eyes and not do too much - take good breaks, do blinking exercises, maybe use wrapround glasses and eye protection at night if you can find them or make them, like these http://www.dryeyezone.com/

Some people use moisture chamber glasses so that they can get on with life and protect their eyes.

Some people even bandage their eyes at night with plastic sandwich wrap and surgical tape (Saran wrap, clingfilm, 3M Micropore surgical tape), whatever helps. This is because sometimes the eyes don't close completely for sleep.

Do you see eye specialists now in Kolkata? The ones I've heard of from my kitchen in England are Dr Partha Biswas http://www.aios.org/arc.asp because he is in the journals and on the committees, and Regional Institute of Ophthalmology, Calcutta Medical College, Kolkata, for the research (PubMed).

We've found better current treatment in the big teaching and medical research hospitals. Also, there's been better team-working for the docs treating the whole body. They call it 'multidisciplinary team'. When they have not got time for consultation in the busy public hospitals, we have paid the same doctors in private practice. I got a list on Google 'eye hospital kolkata' - you are looking for a hospital Ophthalmology department with ocular immunologists, if you can find that.

Do you have any help with the emotional and spiritual side of this? Friends and family, or a community?

[Niaz 47]

Thanx for kind reply

I can use computer, tab or cell phone only for a few minutes. It makes my eyes dry more quickly. eyelids become scratchy and heavy. My Dr is very kind. He is trying with different drops and gels . another problem I forgot to tell my nose runs when I sit down, stood up or walk. But nose is dry when I lay down on the bed. Is there any relationship with eyes?

[littlemermaid]

Very good news that you have a kind eye doctor.

http://www.ophthobook.com/videos/ana...-the-eye-video You might like this great teaching video about eyes by Dr Timothy Root on Root Eye Network website. He explains the 'lacrimal system' and how the tears drain into the nose down the punctum. If your eyes are overwatering, maybe that is happening. Good to have more tears than less tears

Dr Harminder Dua found another layer of the cornea underneath last year so they know there are 6 now... See how medical science improves every year - this is our hope!

Hope all this helps you make a list of questions for your next eye doc appointment. Maybe ask his opinion about wraparound glasses and protective lenses too.

If the videos about other people's eye conditions upsets you, please stop, because the rest is not so useful for you.

[Niaz 47]

thank you littlemarmaid for your every reply.I contacted with hirenthe. he helped me. and have appointment with dr partha biswas.next 24 will be my visit.he seems to be very busy.I am thinking of punctul plugs.
pray for me.

[lizlou29]

So glad to hear this Niaz. Good luck, you've been through/ are going through such a terrible time. I don't pray but I will be thinking of you. Littlemermaid helpful as ever.

[littlemermaid]

Niaz, I wonder if Dr Biswaz can help you with new treatments to help you get comfortable. Hirentherock was using bandage lenses, PROSE I think. There is also a gentleman from USA on the Facebook closed group Dryeyetalk - all you do is click to join and speak freely there. He has had GVHD for 2y and is doing well but I think he would like a friend to talk to. Sometimes with these very busy doctors who work in different countries, it is helpful for them to recommend someone in their team or a doctor near home for quick appointments. We are all thinking of you as you are thinking of us. Some other members do have severe dystrophies and conditions too so do not feel alone now.

[Niaz 47]

Niaz, I wonder if Dr Biswaz can help you with new treatments to help you get comfortable. Hirentherock was using bandage lenses, PROSE I think. There is also a gentleman from USA on the Facebook closed group Dryeyetalk - all you do is click to join and speak freely there. He has had GVHD for 2y and is doing well but I think he would like a friend to talk to. Sometimes with these very busy doctors who work in different countries, it is helpful for them to recommend someone in their team or a doctor near home for quick appointments. We are all thinking of you as you are thinking of us. Some other members do have severe dystrophies and conditions too so do not feel alone now.

hi, I sent request to dry eye talk group.but still not approved. what is the difference between bandage lens prose or scleral lens prose are they available in india except boston prose.they are so costly.

[littlemermaid]

what is the difference between bandage lens prose or scleral lens prose are they available in india except boston prose.they are so costly.

Please someone experienced answer this.

I sent request to dry eye talk group.but still not approved

It will be soon. The lady who started this Dryeyezone and the Facebook group is suffering with her eyes, and works on her farm and shop by day now it is Spring.

It is so important that you keep a clinical Symptoms Diary of how much you are suffering when you go outside and at night when trying to sleep. We have been advised to rate the pain 1 to 10.

Sometimes when we are suffering to this degree, it is useful to note what has been helpful - eg was able to go outside for a short while first thing in the morning, had better vision in damp air, that kind of thing. This helps to identify useful strategies.

Some people are photographing their red eye with a camera phone or having an Optometrist take eye surface photographs. It's amazing how good camera phone photographs can be. Also when we see different doctors we take the medical records.

This will help the doctors understand the history and help you find solutions. Sometimes it is difficult to explain what is happening when we are in the consultation, although as a professional Pharmacist you will better at this than we are.

Have you looked at getting moisture chamber glasses to help protect your eye surface?

[Niaz 47]

Have you looked at getting moisture chamber glasses to help protect your eye surface?

yes I am looking for moisture chamber glass.but it is not available in india.I also cant buy from online because it will be too costly with shipping cost.now I use a curved sunglass which cover my most of the eyes part.it is only ten dollar .but not satisfied with cause air still pass through it.