After 9 years having survived SJS/TENS, I have finally found relief

[littlemermaid]

Maybe the question is why has the eye suddenly moved? Do you think the muscles around the eye are affected, rather than it's moved to accommodate the weaker vision? Can you remember when it started? I'm just wondering whether squint surgery may be for a pre-existing muscle problem maybe, rather than something that happened later. I know the muscles can be 'frozen' with botox injection but whether you would want that stuff injected in and whether it would help the accommodation improve I don't know. It doesn't look like a big squint, does it, so hopefully the brain will accommodate bilateral vision when things settle down and maybe they do try patching.

I did work at school with a girl who had bilateral amblyopia and could not see the board in the classroom, and after the best possible prescription glasses and many computer games (!) her vision improved to the point she could read a car number plate at 20m with glasses. So I've read research that maybe amblyopia is not fixed and the brain does accommodate past childhood, and this is why you have 2 different views on what it is.

Do you think the double vision is a separate problem to the squint?

I have older friends with unsuccessful cataract surgery and opaque cornea with little vision and there's no strabismus. It will be a long process but we send you much support and hope for the future

[hirentherock]

I appreciate ur suggestions and views.It will help me when i will consult to doc again next week.

My weaker eye had no vision from my age of 9 to 17.
Well my double vision problem started in 2001, when i had 1st cataract in my weaker eye.An inexperienced doctor operated and the posterior chamber was broken after the surgery(or may be during the surgery). Since then iol was dislocated but no doctor was able to see my eyes properly bcoz i had excess photophobia.I was not able to open my eyes to the slit lamp.Since this surgery i was compalining about double vision but none cared about it.The double however was bearable and there was no muscular squint.

Then i had iol removed in 2007, thanks to shankara nethralaya doctors who detected the lense is fallen out and needs to be removed.They were ready to put new iol with scleral fixation technique but during pre operative exam they found my eye is highly myopic -13 or so.So it was not possible to put such an iol in scleral fixation.If i had +13, it wud have got accomodated.But -13 lense is not available and that too with scleral fixation it seemed to be a challenge for them.So they decided to just remove the iol and didnt replace it assuming its not going to help me for vision.
At this time, after removal also i had mild diplopia continued.Again it was bearable.

But since past 6 months, after my other eye got iol implanted of -6 power, this diplopia has become more bugging.Doc had told the diplopia shud subside in sometime.but it keeps increasing.Now i see 2 different images and my brain stays busy in concentrating on the other image.
So we can assume that the diplopia is caused by difference of power between 2 eyes.

But my doctor says my eye is also having muscular squint as well as aphakia problem.The diplopia is result of both of these.
I need to see a squint specialist soon.

[littlemermaid]

Hiren, This correction is such a skill and I dearly hope you can find very experienced doctors to bring you to comfort.

Is there a squint specialist working with Shankara Nethralaya working with the other docs? The muscular squint was not there before surgery though, was it, and they should not overlook that fact and do simple muscle surgery which may or may not work, and with you, has more great risk.

The paediatric anterior segment and cornea teams are very good at treating adult strabismus and advertise for this, because they work on exactly this specialism, giving people with congenital opacity or post-surgery or damage from disease, the best possible corrected vision. And your situation reminds me very much of what we see when we go to the children's eye clinics. Seeking out this type of doc for consultation on what's possible may be another option. Can you find this in your region? I hope you like your squint specialist.

I wonder if the position of the IOL would cause this?

This Prokera is very promising for you, isn't it? Dearly hope your new scleral lenses will bring healing and comfort, as Grandsporta has found.

[Súil Eile]

That's so great to hear Grandsporta! Some days it's perfect to hear a positive story You really deserve some comfort and happiness after all you've been through for 9 years.

Hiren, my fingers are crossed for you and I hope things really improve for you soon

[grandsporta]

That's so great to hear Grandsporta! Some days it's perfect to hear a positive story You really deserve some comfort and happiness after all you've been through for 9 years.

Hiren, my fingers are crossed for you and I hope things really improve for you soon

Thank you very much!! And I appreciate you staying on topic. I don't think anyone realizes how hard it is to be a survivor of SJS/TENS and what we deal with on a daily basis. I was very excited to post this thread. It took me back all 9 years of the pain and daily suffering so I appreciate your comment.

[Súil Eile]

It's such a long journey that you've been on, fair play on getting through it. I'm sure it must have been very hard to keep going at times. I just googled SJS/TENS ! It must have been horrific. I can't imagine the pain and discomfort you've had to endure. It must have impacted every aspect of your life.

I'm thrilled your eyes are feeling better. How is your skin now? Make sure you do something really nice for yourself...you deserve it

[littlemermaid]

Grandsporta, What a wonderful thread with some very hopeful news for people. It is very kind of you to share your success with scleral lenses with people like Hiren who responded to your message of hope and I hope you will talk to him about the difficulty and the pain you have both been through.

Similarly he started SJS at 8 years old but it was misdiagnosed as measles and sulpha drugs caused more damage. He lost vision in one eye completely after unsuccessful cataract surgery, and just had an intraocular lens implanted into the other eye at quite great risk. IOL surgery has only just been attempted because of the problems of operating on and healing the dry eyes.

He is feeling very isolated with SJS and Sjogrens although he is as active as possible and your success is inspirational - I hope you can find mutual support, and you have my great admiration for your journey.