Help a newbie

[ladyjlz]

Hi, I just found this sight, and look fwd to finding some friends that share my misery,lol, maybe some hope and new remedies. I am afraid after this last 3 month intense flare up, I am have permanate vison damage. My eye sight is not clear,nor can I seem to get a grip on this problem this round.
It's been a long road for me, I hope to chat soon! ladyjlz

[Rebecca Petris]

Hi ladyjlz and welcome!

Hi, I just found this sight, and look fwd to finding some friends that share my misery,lol, maybe some hope and new remedies. I am afraid after this last 3 month intense flare up, I am have permanate vison damage. My eye sight is not clear,nor can I seem to get a grip on this problem this round.
It's been a long road for me, I hope to chat soon! ladyjlz

Sorry to hear what you're going through. Can you share some more about it? What is your doctor saying about the impact on your vision? What treatments are you using now? Are you getting erosions? ulcerated? concerned about scarring?

[ladyjlz]

Feeling so alone

Rebecca,
Thank you for reply, I wasn't sure I psoted correctly,as I am new to any forum, and not so sure how to use them properly. I will reread introdution.
My story is a long history of stumbling onto sjogrens after yrs of suffering. This round has lasted months,The Dr. doesn't seem like much help, after prescribing Alrex, Zylet, Tobradex, Vigamox as well as every tear on the market. He says go buy some goggles. My concern is could there be possible permanet damage to my vision, I can't see my face clearly in a mirror, I feel like sand has be thrown in them. Ouch, I have had flares prior but never for this long. Confused n calif.

[Rebecca Petris]

Rebecca,
Thank you for reply, I wasn't sure I psoted correctly,as I am new to any forum, and not so sure how to use them properly.

You're doing just fine!

I will reread introdution.
My story is a long history of stumbling onto sjogrens after yrs of suffering. This round has lasted months,The Dr. doesn't seem like much help, after prescribing Alrex, Zylet, Tobradex, Vigamox as well as every tear on the market. He says go buy some goggles. My concern is could there be possible permanet damage to my vision, I can't see my face clearly in a mirror, I feel like sand has be thrown in them. Ouch, I have had flares prior but never for this long. Confused n calif.

If you're in SoCal you might want to get in touch with the orange county dry eye support group - they're really good with suggestions & also recommendations of doctors in the area that are good for dry eye.

Re: permanent damage to vision: This is a common fear with dry eye. I would say that if your DOCTOR is not talking about being worried about your vision, you don't need to be too stressed about it. Even if an eye doctor is useless about every other aspect of understanding and caring for dry eye, they're going to notice anything that is vision threatening and deal with it accordingly. For a lot of us, dry eye can cause a lot of pain and interference with life without actually threatening the cornea in that way. Corneas are remarkably tough tissues - they are incredibly fast healers from a lot of things and can take a lot of beating from dry eye without permanent vision damage. The time to be more concerned about vision is when you're having frequent erosions to the point of getting corneal ulcers.

[ladyjlz]

please help

Rebecca, Thanks again for reply.I have been to 2 different Drs, the 1st one just said where goggles and the second one said I had dry pits "like a football"
but didnt answer when i said permant damage?? I am so scared because it has been going on so long this time. I am now using Nevanac with Restasis,and Systane inbetween. Do you have any other ideas of what I could do do help myself? Thanks for support!! oh I am in Northern Ca.

[Rebecca Petris]

Rebecca, Thanks again for reply.I have been to 2 different Drs, the 1st one just said where goggles and the second one said I had dry pits "like a football"
but didnt answer when i said permant damage?? I am so scared because it has been going on so long this time. I am now using Nevanac with Restasis,and Systane inbetween. Do you have any other ideas of what I could do do help myself? Thanks for support!! oh I am in Northern Ca.

Goggles are good! But information about what's going on with your eyes is really important too! Your doctor's lack of communication on such an important matter is not okay. Possibly your first step needs to be finding a doctor who communicates better. Or if you want to try again with your current doctor, it may help to take a short list of questions with you and perhaps best of all bring a friend or family member along (I know lots of people who do this). You need to know whether the surface has ulcers or scarring and what other treatment options might be available to protect and hopefully improve your vision.

For helping yourself in the meantime... check out this article in case there's anything you haven't done on it.

[ladyjlz]

sew eyes shut??

I went back to othomologist today, and got him to talk, maybe I shouldn't have, he said I have the most severe dryness he has ever seen, refering me to a corneal specialist, and then he says sometimes they have to sew your eyes shut to retain any moisture..!!!!!!!??? Has anyone ever heard of such a thing? Apt, next week.

[Rebecca Petris]

Oh dear. I'm sorry. But hopefully the corneal specialist will be much better at this!

then he says sometimes they have to sew your eyes shut to retain any moisture..!!!!!!!??? Has anyone ever heard of such a thing?

NONSENSE! Don't listen to this. Yes, there is such a procedure (called tarsorrhaphy) - they don't sew your lids all the way shut, just the edges a bit to reduced exposure. But it is rarely performed now and for good reason. There are SO MANY other treatments available. Don't ever let anybody push this sewing procedure on you... even in extreme cases there are better alternatives.

[ladyjlz]

Rebeca, Thank you AGAIN, I have been mentaly drained since he told me my eyes may get sewed shut..I need to pull myself together and somehow get a grip. Just reading your reply gave me light & hope, I am barely hangin on.
thanks Jami