2 yrs dry eyes after exposure to fresh paint

[Family man]

Opthamologist or specialist in San Diego needed

Thanks Billye for your comments. I am a Kaiser Hospital member and they are virtually hopeless when it comes to dry eyes. I could use a referral to someone in San Diego. If anyone knows of someone please let me know. HERE IS MY QUESTION: IS IT POSSIBLE TO HAVE SJORENS BUT NOT HAVE DRY MOUTH? Thanks, Robert

[Silverlady]

Yes and no

I believe it is yes and no. There are degrees of dryness. I didn't notice the dry mouth after I was diagnosed with Sjogrens at all, even after stopping the pain meds. But I was developing it with a low grade burning feeling in my mouth. It would come and go. And when it finally came, it came with a bang. My mouth became dry only after developing this burning which has gotten worse and worse. It is part of a nerve thing. By about a year after the diagnosis, my mouth was truly dry. Only you can know if your mouth feels dry or normal.

Maybe someone else will have a doctor's name in San Diego for you. I don't know one.

Billye

[Reggie]

Robert,
The letter I received was from the Boston Foundation for Sight. It was sent to my house because I have been assessed for the scleral lenses two months ago, and I'm going back to Boston in two weeks. Edy Jablonski's story was printed in the news letter along with a few other patients who have been helped by this "liquid bandage". If you want to know more about the scleral lenses, there's plenty of info on this site. Just type in "scleral" in the search engine, or you can even go to the scleral section. Regarding the tear duct plugs, I have had my lowers done for about 5 years now. I haven't had any problems with them, but I never noticed any relief either. I have been told by my last doctor to have the uppers done as well, so I'm waiting for that appointment. They are pretty safe, so you need not to worry that much. Try the plugs, but just don't jump out of the window and get yourself cauterized (may be an option for you in the future). I hope you are able to find some relief.

[Family man]

thanks reggie

Reggie: Thanks for your reply but I need your help in locating this article on Edy Jablonski. I looked through the Boston Sight web pages and their newsletter there but could not find it. What is the issue date? I really want to see this as it is the only paint/ dryeyes reference I've ever heard of! Please let me know. Thanks, Robert Lekven

[Reggie]

The news letter was sent to my house. I don't think you'll be able to locate it on the net. It's dated as Fall 2006. Edy Jablonski's story was just one of the many patients who have found success with the lenses. Maybe you can call the BFS and ask them to send it to you. I might be able to photocopy mine, and fax it to you or something. Let me know what you think.

[Reggie]

You know what Robert, I'm just gonna type out her testimonial for you.

Edy Jablonski is a special needs teacher in the public school system in New York. She loves her job and reaps great personal rewards from her “gift” of being able to teach those children who most teachers find “unreachable”. But approximately ten years ago, the fumes from the freshly classroom walls and the newly shellacked floors began to seriously impair Edy’s health upon her return to the classroom after the summer vacation. Edy went to the doctor and was diagnosed with Sjoren’s disease, a chronic systemic inflammatory autoimmune disorder that affects the mucous membranes causing dry mouth, decreased tear production and other dry conditions of the body’s membranes. The pain that Edy experienced in her eyes was excruciating and she was forced to miss the beginning of the school year. Unable to read a book or a newspaper, Edy began her journey of visiting doctor after doctor in search of relief from the pain. In her pursuit of a solution, Edy was offered many “suggestions” from numerous doctors which ranged from “stay in your own little bubble” to “you’ll eventually go blind”, to “you can take massive doses of chemotherapy and see if that helps”.

Finding allof these suggestions unacceptable, Edy was fortunate to meet a more compassionate physician who had just attended a medical symposium in Chicago where she met Dr. Lynnette Johns of the Boston Foundation for Sight. The physician learned about the Boston Scleral lens from Dr. Johns and suggested to Edy that she travel to Boston and meet Dr. Rosenthal. Edy’s husband, Vice-President of patient relations at a New York hospital agreed feeling that this sounded like his wife’s best chance to resume a normal life.

In November, Dr. Rosenthal inserted a pair of trial lenses into Edy’s eyes and had her wear them for a few hours to see how they felt. Once outside of the office, Edy explains that she was “dancing in the streets with happiness” because for the first time in 10 years she could see without the accompanying unbearable pain! “People thought I was crazy, but I felt like I had just won the lottery”, Edy explained.

Of her experience at the Foundation, Edy expresses her great admiration and gratitude to all at the Boston Foundation of Sight who helped make her stay in the Boston area so welcoming and comfortable. Of Dr. Rosenthal, Edy said, “Where else can you meet a Doctor who offers to come in the office on Sunday to help you master inserting your lenses? He has the compassion of a person who has walked in his patient’s shoes. His combination of warmth and expertise makes the difference between a good doctor and a great doctor!”

Edy feels truly blessed to be wearing the Boston Scleral lens and her children, grandchildren and husband are grateful that Edy has her life back! Edy is also happy to be back at school teaching her special needs children. How lucky those children are to have their very special, caring teacher back where she belongs.

[Family man]

thanks

Reggie: Thanks so much for typing out the testimonial from Edy Jablonski. In your talks with them, do they take a positive attitude about using the lens for strictly dry eyes? Is it considered an also ran benefit? I have studied the posts on the lens but there is still no concensus but a lot of interest...I guess it is still so new. My question would be as far as you know is the down side risks of the lenses low? No chance of further damage since you are putting something on an already dry irritated surface? Thanks again.

[Rebecca Petris]

No chance of further damage since you are putting something on an already dry irritated surface?

Just to clarify one item... Sclerals do NOT touch the corneal surface, which is why they are such an excellent treatment for advanced corneal disease. They hold fluid against the entire cornea, promoting healing and also providing for good optical quality. This was a key point of interest to me because I can only see properly through rigid lenses BUT all lenses smaller than sclerals touch the cornea at least somewhere, so if a good tear film cannot be maintained between the lens and epithelial surface, yes, there is risk of damage from adhesion of the lens. With the scleral, by contrast, there is none. Its outer edge rests on the sclera (white of the eye).

[Family man]

healing too?

Thanks for that distinction. I take it you put fluid in the eye first and then the lens keeps it in as you quickly put the lense in? Also, are you noticing a healing of your dry eyes (i.e. less dry) when you take the lenses off to go to bed etc.? Do you wake up at night all dry (I do, twice a night)? Let me know. Thanks, Robert

[Rebecca Petris]

I take it you put fluid in the eye first and then the lens keeps it in as you quickly put the lense in?

No, you fill the lens and place it on the eye, looking straight down.

Also, are you noticing a healing of your dry eyes (i.e. less dry) when you take the lenses off to go to bed etc.?

Yes, very much so. For more details I wrote up my experience in the Aug issue of the Dry Eye Digest.

Do you wake up at night all dry (I do, twice a night)?

My experience has been that with sclerals by day and tranquileyes and dwelle by night, I do not wake up with dryness.

[Family man]

Thanks Rebecca

Rebecca: I have read most of the posts on the lens that I can find but I see none except yours that talk about results some months (or several weeks) out since receiving the lens. Tell what category to look in perhaps. I noticed Erik shared his Boston visit but has he shared since then? Also, have you done a test to see how long the healing effect lasts after you take the lens out? Is it temporary? Also, in your opinion is it possible to have sjogrens disease and not have dry mouth (just dry eyes)?

[Rebecca Petris]

Rebecca: I have read most of the posts on the lens that I can find but I see none except yours that talk about results some months (or several weeks) out since receiving the lens. Tell what category to look in perhaps. I noticed Erik shared his Boston visit but has he shared since then? Also, have you done a test to see how long the healing effect lasts after you take the lens out? Is it temporary? Also, in your opinion is it possible to have sjogrens disease and not have dry mouth (just dry eyes)?

There are other users with sclerals but not necessarily posting currently. Phillipp from Germany was a regular here and he is a long-term sclerals success (fitted in London). For more examples I'd contact BFS directly.

Re how long relief lasts after removal: I need these lenses to see, so I am not in a position to leave them out just to find out how long it might take to start hurting again.

Re Sjogrens: Yes, as far as I know. Bear in mind average time to diagnosis of Sjogrens is something like ten years (so I heard)? If everyone with Sjogrens had all the common symptoms of it they would probably be diagnosed sooner. On the other hand, Sjogrens is not the only auto-immune disease associated with dry eye.

[Lucy]

More about scleral lens/Sjogren's/eye changes/trips to Boston

Family Man.....I have the Boston Scleral Lens. I got them exactly one year ago. Six years post-op bi-lateral lasik and one year post-op OS cataract surgery leaving me with anisometropia (wide variation between eye RX.) I have trigeminal neuralgia in OS, which the cataract surgery put into high gear.

To complicate things, I've been DX with Sjogrens within the past couple of months. There you have a mixed bag. (I'm sure Goober will like that one.)
I made one trip to Boston in July 2005 for a one day consult. It was determined I probably could wear the lens. I made a second trip October 2005 to be fitted for the lens. I found relief from the pain of trigeminal neuralgia. Not completely, but a lot. Remember, few people on here have trigeminal neuralgia. Everybody has dry eye in one shape, form, degree or another.

I'm concerned about all the "wow factor of the lens" being put up on the bb right now, but haven't said much. I know someone will jump on me for being a drag and raining on the parade. Remember, I WAS helped by the lens. Many of the recent posts are in great anticipation and I think much greater anticipation than will be realized. This is not th fault of the BFS.

I need to go back to the BFS, and have been too sick to worry about it right now. I'm being treated aggressively for Sjogrens. This will be 3 trips from Michigan to Boston and back I will have made in the past year. This is my choice. After I got the lens in October 2005, I got sick with shingles and could not wear the lens for a couple of months for fear of contamination between the lens and my eyes. Shortly after that, I began wearing the lens again and got an infection on one eyelid that also kept me from wearing the lens for fear of cross contaminating my eyes. I had this eyelid infection when I went to the Dry Eye Conference in Tampa in February. The infection went on forever and I was unable to wear the lens for a long time with that.

In the interim, I know one lens hurts me when I wear it. That's the reason I need to go back to Boston. To have different lens made. No doubt, my case is a little more complicated than just dry eyes, but I could not, nor the BFS could not foresee ANY OF MY COMPLICATIONS AFTER I LEFT WITH MY LENS. So, I wanted to tell that my year with the lens has not been one long joy ride. The lens has performed as expected. Other factors got in the way and I've probably only worn the lens 25% or less since I've had them. I rely on glasses and goggles if I'm not wearing the lens. My glasses are bifocals with progressive lens and cost @ $500 each.

I hope this is not perceived as any reflection on what BFS should have/could have done. It's beyond their control what happens to you after you leave their building. Your eyes can change. In my case, very fast. I've had so much systemic stuff going on with Sjogrens a lot more than my eyes have changed.

I didn't want to write this, but I can just see confetti flying all over the place. If you do, or anyone pursues the lens, it's highly possible you'll have to make another trip to Boston. If you live close, this isn't a problem. It is if you have to make work arrangements, child care etc.

I have been in touch with the clinic and will be going as soon as my medications have stabalized and I'm well enough to travel. I did not think I'd be going back, or more specifically need to go back so soon. Remember, I've had several things that kept me from wearing the lens. If you get an infection, it'll stop your wearing the lens )or any lens) while you heal too. But an extra trip to Boston, or possibly more is a possibility, even though they would do everything in their power to prevent this.

REBECCA- My new (wonderful) rheumatologist told me 7 years is the average from onset to diagnosis for Sjogrens. I certainly had the sicca symptoms all this time, and I've been all over the country to be seen by highly respected ophthalmologists and not ONE ever mentioned the possibility of Sjogrens to me. I brought it up to my lasik surgeon within the past two years that I thought there may be a connection. Being an eye doc, he didn't "expand" on this and just thought I'd work it through. I did work it through, with no help from docs. I drug myself in and requested certain tests be done on me.

[Rebecca Petris]

REBECCA- My new (wonderful) rheumatologist told me 7 years is the average from onset to diagnosis for Sjogrens. I certainly had the sicca symptoms all this time, and I've been all over the country to be seen by highly respected ophthalmologists and not ONE ever mentioned the possibility of Sjogrens to me.

I have been to several SSF support group meetings near Tampa and one of the things that most impressed me was how long everyone had suffered from Sjogrens before diagnosis. Interestingly, it was often their DENTIST who first suggested Sjogrens to them. I think that awareness of Sjogrens is growing, but there's obviously an awfully long way to go before it's a 'household name'.

p.s. Rain all ya want, Luce. We're all just sharing our personal experiences, for what they're worth. It's up to others to decide what might be worth their investigation or not and where & how to set their expectations.

[RobertT]

Paint fumes

I have noticed a similar problem with paint fumes, new carpets, offgasing etc, giving me dry eye problems. I have had a dry eye problem ever since I started living in apartments which are bad for poor fresh air circulation. I have lived in 3 apartments in the last six years, all of which have been freshly painted and have had new carpet installed, and I can feel my eyes get dry as soon as I walk into my apartment. If I go away on vacation for a few days my eyes start to feel better. Even with the windows open constantly it is hard to get fresh air into most apartments, and in my place, the just feels thicker when you walk inside. I honestly believe as soon as I can afford to get a house and have more fresh, then my dry eye problems with start to diminish. Love to hear from other with similar problems.