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Hello Everyone,
I joined to hopefully get some help finding a doctor in my area that has a lot of experience removing Salzmann nodules. I'm just over 40, and wore contacts for about half that time. In 2009, an optometrist noticed something on my left cornea and referred me to specialist. I stopped wearing contacts at that point and went back to glasses. It was only last year that a doctor put a name to my condition, Salzmann nodular degeneration. I have it on both corneas, and it greatly affects my night/low light vision. Night driving is almost impossible unless it's on a country road where there are no other sources of light. My vision is not able to be corrected with regular contacts or glasses. I am near-sighted and was about -3.5 in both eyes with astigmatism in both. Now, due to the nodules on my left cornea, I am only about -.5 in that eye! Yes, it is a double edged sword, because although I can see well out of that eye without correction, I still have the horrible "comet tails" or "star busts". Through glasses, my left eye is about useless due to the extra strong rx. When you put such a week rx next to a strong one (L -.5 R -3.5), it's an instant headache when wearing glasses. I just deal with it the way it is for now.
I looked into scleral lenses which are often used (with great success so I've read) to correct the problem, but insurance will not pay for the lenses, they are $1500 which includes 3 appointments and the lenses themselves. I'm a little hesitant of the palce I went, too since they've been fitting sclerals for 2 years and only have about 10 patients wearing them.
So, now that I have lived with this for 6 years, I am ready to try to improve my quality of life with either having the nodules removed or getting scleral lenses. The doctor with the sclerals said I could see a specialist or I could go with sclerals, he seemed to think they would work well. I had decided that if insurance would cover those, I'd go for it, but it won't so that threw me back to the idea of just having them removed.
The problem now is...the doctor who diagnosed me said that he does not remove enough to be comfortable handling it. He said if I was very old, or almost blind, it would be different. He referred me to another doctor, however, that doctor tells me he does under 10 a year. I understand that Salzmanns nodules are rare to begin with, but that number seems REALLY low for someone to be scraping things off of your cornea!
Does anyone here have SND and use sclerals or anyone who can comment on the experience of having them removed? I just don't want to make the wrong decision here. I am in the pittsburgh, pa area.
I joined to hopefully get some help finding a doctor in my area that has a lot of experience removing Salzmann nodules. I'm just over 40, and wore contacts for about half that time. In 2009, an optometrist noticed something on my left cornea and referred me to specialist. I stopped wearing contacts at that point and went back to glasses. It was only last year that a doctor put a name to my condition, Salzmann nodular degeneration. I have it on both corneas, and it greatly affects my night/low light vision. Night driving is almost impossible unless it's on a country road where there are no other sources of light. My vision is not able to be corrected with regular contacts or glasses. I am near-sighted and was about -3.5 in both eyes with astigmatism in both. Now, due to the nodules on my left cornea, I am only about -.5 in that eye! Yes, it is a double edged sword, because although I can see well out of that eye without correction, I still have the horrible "comet tails" or "star busts". Through glasses, my left eye is about useless due to the extra strong rx. When you put such a week rx next to a strong one (L -.5 R -3.5), it's an instant headache when wearing glasses. I just deal with it the way it is for now.
I looked into scleral lenses which are often used (with great success so I've read) to correct the problem, but insurance will not pay for the lenses, they are $1500 which includes 3 appointments and the lenses themselves. I'm a little hesitant of the palce I went, too since they've been fitting sclerals for 2 years and only have about 10 patients wearing them.
So, now that I have lived with this for 6 years, I am ready to try to improve my quality of life with either having the nodules removed or getting scleral lenses. The doctor with the sclerals said I could see a specialist or I could go with sclerals, he seemed to think they would work well. I had decided that if insurance would cover those, I'd go for it, but it won't so that threw me back to the idea of just having them removed.
The problem now is...the doctor who diagnosed me said that he does not remove enough to be comfortable handling it. He said if I was very old, or almost blind, it would be different. He referred me to another doctor, however, that doctor tells me he does under 10 a year. I understand that Salzmanns nodules are rare to begin with, but that number seems REALLY low for someone to be scraping things off of your cornea!
Does anyone here have SND and use sclerals or anyone who can comment on the experience of having them removed? I just don't want to make the wrong decision here. I am in the pittsburgh, pa area.