Working with Schirmer 0 mm

[bp77]

Hi

Yes, I have had a Schirmer 0 in one eye and 1mm in the other. It was so painful I wanted to remove my eyes with a spoon. I saw the guru of all eye guru's Dr. Reza Dana in Boston. He had one of his fellows put four plugs in my eyes who was very concerned with the correct sizing. You must know that I have had them in before from other eye docs and they kept falling out. Then he had me do a blood draw and made me my own stem cell serum tears. I use them 6x per day. I also use OTC Genteal gel drops and Refresh (small vials). This all took away much of the pain but I was till very uncomfortable. One month after at my next visit he gave me a yet to be approved drop that he "discovered". It is called Kineret and is only available through him. Someday it will be on the market. My eyes are now Schirmer 1 and 2. It does not sound like a big change, but believe me, with the 4 plugs and constant flow of four different eye drops I can actually manage my eyes, go out, go shopping, have a life, etc. Of course I wear sunglasses all the time, but compared to stabbing pain and my eyes glued shut I feel so much better about things. By the way, you mentioned that there is no cause for your dry eye. There IS a cause, you just don't know what it is yet. Keep trying other doctors until you find out what is the cause. I don't know where you live but the big experts are in Boston.

hi, your story is great and i like to ask u, do u have bleph or mgd or swllen lids ? no doctor can help me with this. this doctor that i was seeing gave me a drop made me much more dry. when I told him that i am much worse she said we need to get second opinion. my heart droped. she made me so much worse and then she does not want to see me. now I am worse than before. I am waiting for the weather to get better so i can travel and go to dr.dana . with my eyes it is hard to go outside.

[MBC]

Schirmer 0

Hi again

Did not realize you are all the way in France. First, I have had a stem cell transplant and due to a drop in prednisone, I basically ended up with something that mimicks an auto immune disease and thus the dry eyes. My body forgot how to make any tears. However the dry eyes and the inflammation were really two separate problems. While the serum drops helped the dry eye, the Kineret drops helped the inflammation. I really don't even know what my official diagnosis actually is. They mentioned it but I forgot. It really did not matter to me at the time because I was in such agony I walked in and begged for help. It will be difficult for you to travel to Boston in your condition.

I feel that you should be glad that your doctor admitted she could not help you. I am at the point now (I have a lot of other health issues from my transplant) that I give a new doctor one or two chances to help me. It does not matter how they might feel. I move on and ask over the phone if they have treated others with my problems. I think we all need highly specialized doctors at this point. Is there any particular research institution in London that might help you? The people in Boston are from Harvard Medical School and the Mass Eye and Ear is a research center. I believe this is what you would need to find instead of just going from eye doctor to eye doctor. Just my two cents.

[MBC]

Anthos, I forgot to answer your original question. I had swollen eye lids, red and sensetive. I also had bloodshot eyes and the lower rims were always red and irritated. I was able to manage the dry eyes much easier after the inflammation was gone. I still wake up with inflammation but it is not as severe and I can at least manage it. I still wear sunglasses even inside because I have a lot of windows. Have you tried serum drops yet? You will need to do a blood draw and they make them for you. I know they are doing it in London. This is the only thing that worked for me. Let me know how you are doing.

[lzer]

Hi Anthos
my shirmer test isn't 0 but very close to it. My doctor said that even with a zero your eyes usually make some tiny amount of tears. for this reason, i have 4 punctal plugs.
this helps quite a bit. even if you don't produce any tears it keeps the artificial tears in your eyes longer.
so..basically i use:
4 punctal plugs
hot compress twice a day (15 minutes) followed by occusoft scrub
Bion Tears as needed
sometimes Oasis Plus tears
I drink a TREMENDOUS amount of liquid. I try to make most of it water but have to admit i drink a lot of diet 7up
i take 4 capsules of fish oil each day.
Betty

Betty, does the increased fluid intake make a difference? How much is tremendous?

[bvendig]

tremedous amount of liqud

Betty, does the increased fluid intake make a difference? How much is tremendous?

I honestly can't say whether it makes a difference because i increased liquids, got punctal plugs, added fish oil all at the same time.

i can say, though, that i sometimes have very dry eyes and drink a few glasses of water and shortly after will have a slight improvement (maybe it's just coincidence) but, i should also say that every doctor i've ever gone to about dry eye has said to drink "lots" of water.

in my case i drink about 32 ounces of water a day plus probably
about 8 cans of diet 7-up (totalling another 96 ounces)
so, i guess that's about 128 ounces a day
thanks betty