Catatact needed in sjs eye

[hirentherock]

I have been victim of SJS abt 20 years ago...when i was 8yr old...now 28...my right eye has almost 0 vision only finger counting vision.IOL has been removed from right eye as its useless to put a new lense to get vision.

Now my right eye where i have 18/60 vision and schiemer test result of abt 7-8, needs cataract surgery(not on an urgent basis) The coenra specialist doctor had suggested to wait for calming of eyes as i most have infalmmation in both eyes.

But another doctor whom i consult regularly has told me wait for any surgery in left eye which is my life line as right eye has no vision.

Can any1 tell me what adverse effects can i have after cataract in left eye considering i have sjs?has any1 been through it? rebecca can u give ur opinion? im looking for opinions as u all r experts here.

[Rebecca Petris]

How's your vision with glasses in that eye? And how's your dryness symptoms, how much does it bother you now?

Doctors vary a lot in advice about when to get cataract surgery. The conservative ones in general will tell you to wait till it's really affecting your vision functionally before doing it, and likewise the cornea-savvy ones will tell you to wait if they see current dryness problems. Me, I'd always say wait on surgery unless/until it's a necessity, but I'm biased because I spend so much time emailing/talking with people who have had problems after surgery.

A lot of SJS patients do very well with Boston Sclerals but you haven't really said anything about dryness except for inflammation and moderate schirmer results so it doesn't sound like you're in a position to need it right now.

[hirentherock]

Hi rebecca thanx for the view.
Specs doesnt help my vision.Also due to inflamation n dryness i have too much blinks to keep eyes open.It gets dificult even for a vision test on a few times. I have hyper photosentivity for eyes and face too.Cant bear direct sunlight at all for right eye whereas left eye better but only comparatively!

Well my dryness affects my day to day life a lot.
I havenot tried boston scleral lense for day to day wearing.
I had tried it when i visited 1 of the 2 clinics available in indai for boston lense.My vision had improved a lot when i worn the lenses.I worn it for abt 10-15 minutes but the vision seemed heavenly good.
BUT as here no doctor is so much aware/confident abt boston lense.The local doctor isnt aware of it and when i presented him the text and results of boston lense he didnt seem to feel ok with it reason being "WEARING IN N OUT THE LENSES WILL BRUSH WITH CORNEA AND WILL MAKE EROSION TO CORNEA."

Hence me and my dad(who decides almost everything concerned with my eyes) decided not to give it a try.

We had visited an old lady aged 65yrs who had scelars she reported she cant wear it continuesly and she has to wear it out every 1 hour.

Hence we havnt put a step ahead in the direction as yet.

As of now left eye doesnt have much of a problem in terms of dryness n all
I use GENTEAL 3 times a day, 1 in morning 2nd after bath and 3rd in evening 6o clock.I used have lacrigel/genteal gel at night but i feel more comfortable whole day if i didnt put the gels at nights.So im using gels once/2days.From the start im avoiding steroids.I had used oral and topical steroids for right eye(where vision is too poor) when my IOL was removed and AMT was done for the right eye only and also cauttery done for both eyes.

My work profile is computer based so from 9am to 4pm i need to be on pc.

Can u tell me what kind of problems can ocur if i go for the cataract for left eye?Boston lenses can cover the vision lost by IOL which is disturbed by cataract?
And as there is no iol in right eye, can boston lense can give the vision which is not there just for the sake of not having an iol?

[Rebecca Petris]

Hi there. Thank you for the further details. Obviously the dryness is a lot more serious than I realized. Is the vision loss all from SJS as well?

BUT as here no doctor is so much aware/confident abt boston lense.The local doctor isnt aware of it and when i presented him the text and results of boston lense he didnt seem to feel ok with it reason being "WEARING IN N OUT THE LENSES WILL BRUSH WITH CORNEA AND WILL MAKE EROSION TO CORNEA."

That statement is simply not true. BSLs are used to treat and prevent corneal erosions and ulcers. They do not come in contact with the cornea and don't cause erosions. I'm not quite sure what he meant - did he mean the process of taking them out and putting them in? You have to be trained for this very carefully but again, in all my years of sclerals any problems I ever had taking them out or putting them in certainly did not include any contact between the lenses and my corneas.

Here in the US many doctors are also unaware of the boston lenses and do not understand how they are used in cases like this. So I wouldn't be discouraged just by a local doctor who is not comfortable with them.

I have worn these lenses for 4 years and I speak almost every day with people who wear them for many reasons including SJS. I think SJS and GVHD are among the top reasons to get sclerals specifically for dryness.

We had visited an old lady aged 65yrs who had scelars she reported she cant wear it continuesly and she has to wear it out every 1 hour.

I know of a few cases like this as well. Not everyone can have a successful scleral lens fit unfortunately, which is very frustrating. But the majority do.

Can u tell me what kind of problems can ocur if i go for the cataract for left eye?Boston lenses can cover the vision lost by IOL which is disturbed by cataract?

I can't tell you about general cataract complications but specifically about dry eye, cataract surgery certainly can cause additional dryness/pain. It doesn't always, but when you're already not in good shape I think you're more likely to notice the difference.

And as there is no iol in right eye, can boston lense can give the vision which is not there just for the sake of not having an iol?

That's a very interesting question and I don't know the answer. I would contact the clinic in India and see what they say.

[hirentherock]

Well yes the vision loss is due to SJS just after i had sjs at age of 8yrs.
The vision loss is due to corneal scars as the doctor told me.The local doctor is of the view that after cataract in my working eye(left) would make my vision better.Currently i can read upto 2 lines on the eye sight text test.He says it can improve upto 4-5 lines if cataract is done without additional vision complications.

But with scleral i could read all the lines upto last when i had gone to test n try the scleral lenses at mumbai(india).As i said for the aforesaid reason we never went there again..also for another reason which is the doctor there behaved badly when we asked the things in details, he got irritated and said IM THE DOCTOR NOT U!!!

I think there is another centre for boston lenses other than the one i visited.I will confirm with my doctor again for corneral erosions due to scleral lenses.

Regarding cataract, its not urgent and the extent of damaged iol is also not big i can carry on like this for probably another 2-3-5 years.

Are you aware of any side effects of AMT? membrane transplant.Im planning to go for it once again for right eye.

Thanx a lot for the valuable information!

[hirentherock]

hey rebecca...have u been able to discuss the thing with boston centre?

[grandsporta]

I had SJS about 7 years ago, my left eye works real well but my right eye has the most problems. It is real dry and red, but I don't have any corneal damage as of yet but my vision is about 40/20 which sucks. Let me know how any treatment goes, I am very curious.

[Lucy]

Rebecca, you might ask the posters if they mean Stevens Johnson SyndromeorSjogrens Syndrome when they use SJS. I thought it meant Stevens Johnson, but on the Sjogrens Syndrome forum, everyone uses SS or SJS for Sjogrens. This might clear up any problem if one or both may be using the initials for different things. Lucy

[hirentherock]

Thats a good suggestion lucy.

just to confirm rebecca and u and all others, i M SUFFERING FROM STEVENS JHONSONS SYNDROME.