runlady63
1 post
Jan 16, 2010
4:40 AM
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My nineteen year old son went for an annual eye checkup in September and they told him they wanted to send him to a Retina specialist the next day. I questioned my son about his eye and he never once told me that he had lost a large amount of his eyesight and that he was experiencing floaters. The retina specialist comes to our town one day a week. They ran serveral test and did blood work and determined that he had sarcoidosis and put him on a steroid. My son finished the steroid and the floaters disappeared but the doctor then told us later that he believed that he had coats disease and that he would see us January 4th. Two days before my sons appointment he told me that he had lost more of his eyesight that everything was cloudy. When we went in on the 4th the doctor asked us how soon could he do surgery on his eye and that he did have coats and that he would like to do cryotherapy on him. The doctor was 90% sure that the surgery would work because the retina was not detached and this would seal the blood vessels. We traveled to Toledo, Ohio where he performs surgery and we were told that everything looks good and we should see some improvement four to six weeks. My son had surgery on Tuesday, January 12 and can still not open his eye and it is swollen? The doctor made it sound like he could attend his college classes and drive but his eye keeps running and it cannot open yet. My son never complains never even told me he was having problems with vision, but this surgery has bothered him. We do not go back until next month for another checkup. After finding this website everyone talks about stages and the doctor never mentioned stages in this or that he might possibly need further surgery. After finding this website last evening I see most everyone has coats in stages and that it starts at a very young age. I am thinking we have not been informed enough about this disease and that I was very fortunate to find this website. I am thinking we might need a second diagnosis. Any thoughts or reply would be appreciated. Prayers to all of you out there going through this.
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Jacobs Parents
246 posts
Jan 16, 2010
7:25 AM
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runlady63,
How close are you to Cleveland? The Cole Eye Institute has some of the best Coats' Disease specialists in the world (including Peter Kaiser). If you can get there, I would strongly recommend it. Good luck to you and your son.
Dave
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runlady63
2 posts
Jan 16, 2010
8:27 AM
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Thanks Dave! Cleveland is 1 hour away from us. Today is day number 5 and he cannot open his eye yet from the cryotherapy. Do you know if it takes this long to recover. Dr. Dabbs made it sound like it is a in and out thing. I believe I will definately look into The Cole Eye Institute.
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Jacobs Parents
247 posts
Jan 17, 2010
8:43 AM
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runlady63,
Our son has never had cryo, but I believe that 5 days is extremely long to recover. If you would like to, you can also email the Eye Institute at the link below. They responded pretty quickly when I emailed them several years ago.
https://my.clevelandclinic.org/webcontact/webmail.aspx
Take care,
Dave
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terryf
3 posts
Jan 17, 2010
6:28 PM
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Our son's doctor told us it could take 1 - 2 weeks for the swelling to go down after his cryo. It has been 10 days since his treatment and he is not too swollen anymore, but his eye is still red and looks a little smaller than the other eye. Although his eye was not swollen shut after 5 days, he was swollen for the first week. Hope that helps. I hope you have some luck in Cleveland. I think you would benefit from seeing someone who specializes in treatment of Coats'. Best of luck and keep us posted.
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firemom
18 posts
Jan 24, 2010
5:14 PM
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It took my son about a week and a half to recover from his last cryo treatment. I think the swelling has a lot to do with how many blasts they had to use and which part of the eye they were directing it at. You will find more info on this web site then any other place, read up on all you can and definately seek a second opinion.
Keith's mom
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