I have had uveitis, in my left eye, since the early 1990Ãs. When it was first discovered, I was having a routine vision check up. I had no symptoms but had ûsnowballs” in the back of my eye (at least that is what the docs came up with at the time). It was what was causing those ûsnowballs” that had everyone stumped. I saw an ophthalmologist, and ophthalmologist/neurologist, and neurologist and my primary care physician. I went through many fun and exciting tests that showed absolutely nothing. I was told I might have a brain tumor and when that was ruled out I was told I had a pseudo tumor. Hummm•.what the heck is a pseudotumor, you ask. Well, from what I understand it is a tumor in your head that is not really there but causes symptoms like it is there. The entire time I kept saying, ûbut I donÃt have any symptoms.” Then, one of my team of docs decided to do some odd blood work like a Lyme test. Yes, I had Lyme disease. I was treated with tetracycline and that seemed to take care of the disease but, those darned ûsnowballs” were still there. Finally, my ophthalmologist/neurologist decided he thought I should have another spinal tap. That was my last day with that team. I wanted to get better but I did not want another spinal tap. I went to my HMO and begged them to let me go out-of-network to someone with an inkling of what I might have and how I can fix it. At this point I still did not have any symptoms and my vision was 20/20 with glasses. I just wanted an answer to my ûsnowball” question.
Eventually, my HMO gave in to my “squeaky wheel” approach and sent me to MEEI to Dr. Foster, which was in 1991 or 1992. He diagnosed me in one visit with pars planitis and sent me on my way with Pred Forte drops, instructions on my new treatment regimen, and to follow up with the ophthalmologist that was part of my group. For the first time in a year, I was calm and felt like I had some control over my life again. I kept my appointments with my local ophthalmologist every six months until he asked my why I kept coming to see him. I figured that if he didnÃt know I must be cured.
In September of 1997, I had a baby and developed postpartum depression. In April of 98, my Aunt died suddenly. This kind of stopped my world for me and I began to have symptoms in my left eye. I thought for a while it was because I was crying so much but, the pain was terrible and my husband wanted me to go get checked out. I went to a vitreo-retinal consultant in Stoneham and he told me: I had ûcells” and ûinflammation”, might need ûsurgery”, go back on Pred Forte every waking hour, and oh, let me give you some kenalog behind your eye. Ok, I bought it for three years, had another baby, got worse then quit him when he came at me with another one of those darn needles full of kenalog. I couldnÃt see and my eye looked like my husband punched my on a daily basis. I knew, Dr. Kenalog and I, were not going to make it.
I went online that same day and discovered the website for MEEI, Immunology Service. I thought to myself, ûokay, I have been there before” so I got on the discussion board and left a message for Dr. Foster. I told him my story and his reply went something like this, ûwhy did you wait so long? Call my secretary and make an appointment.” Well, gee, that was just too simple. I did it. I went to see Dr. Foster before Christmas this past year and had a vitrectomy on New Years Eve. He did some other stuff as well and it worked for a time. Then, the dreaded flare came back. He tried and intraocular injection in April which made me totally blind for a time and then, it seemed to help. My vision was the best it had been in three years or so, but, again, I flared. Now we are up to the part where he has given me a choice of immunosuppressant drugs or the new FML(steriod) implant that is still in its infancy and not yet FDA approved. I will be a guinea pig for the next three years. I figured it was worth a try and what do I have to lose at this point. I donÃt think I have mentioned that I have macula edema because of all the inflammation.
I guess my story does not have an ending yet. I have a feeling I will never get to the end but I would like to live pain and inflammation free. I still have one good eye too see my beautiful children. I can still take them to the park and the library or wherever they want. The only thing that tends to hold me back is a bad eye/bright sun day. My son is old enough to understand that mommyÃs eye hurts and we canÃt really go out. My daughter is still too young to care where she goes as long as she is with me. I feel lucky to have found Dr. Foster and his care and still have the option of hope.
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Uveitis and Steroid-Sparing Therapy
Presented by C. Stephen Foster, MD, FACS, FACR
Audio-Digest Ophthalmology Volume 56, Issue 15