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blubird2167
Registered User
(4/3/09 9:44 am)


I'm confused... Any idea's?
I was told on March 4th 2009. that I had Pink eye. so i go the drops did it for a couple of days and found that it was not working I went to someone and they told me that I had Uveitis. Ive never heard of this be4 at that time. So I was completly confused. She put me on 5% dialter drops 2X a day and Perdisone drops ever 15 minutes. I went back to her 3 days later to find outt hat my inflammation was not going down. She then sent me to a retina specialist. Who scared me to death and told me that I could go blind. And the he wasn't sure at all that I would fully recover from my eye. (At that point I was crying)He had me get all this blood work done. Now I'm confused then be4. He told me to go to a Uveitis Specialist. She confirmed that I do indeed have Uveitis. And that I there was lots of imflammation that was covering my iris in my eye making it like there was a vail over my eye. My vision was awful. I could hardly see the (Big E). She bumped me down on the dialter drops to 1% 2X a day and cut me back on the predisone drops to every 2 hours.
She had me coming back two days later. I went back and she told me that my eye was very stubborn and that the inflammation has not gone down at all. she mentioned 2 flares too.( I dont know what that is?) She told me to continue and come back in two days. I came back and it was still the same, she said that my eye pressue was going up. so she stopped me on the predisone drops and put me on Durezol every 2 hours and keeping the dialter drops the same. Again went back 2 days later . My vision at this point was getting a little better. she said that the 2 flares were still there but the inflammation has gone down slightly. she took me off from the dialter drops. and just kept me on the Durezol. I yet again went back 2 more days later and I was reading 20/20 out of my bad left eye. She then told me to come back 3 days later. It was still doing good. I then went back yes again another 3 days later and my eye took a turn for the worst. Yesterday was the worst day of my entire life. She told me that I had Atrophy in my eye, that I had Herpetic herpies of the eye, that the inflammation has come back. and that my eye pressure is very high. Also she told me that my eye color will not fully come back. (i have blue eyes) My left eye looks green/hazel now? She did an eye test and I was reading 20/40. She claimed that since my eyes were so dialted be4 that she couldnt tell that I had herpies of the eye. I feel like my treatment has been delayed that I was misdignosed, that noone knows what the heck they are doing! My eye was dialted and I was not using the drops for a week and a half now the muscles are not working to make my pupil go down. So she put me on Valtrex 1mg 3X a day. Durezol every 2 hours, a different dialtor drop called Cyclogyl 2X a day, and Azopt 2X a day for the high pressure. I have NOT used the new dialter drop since she gave me 2 yesterday marning. My pupil is huge there is hardly any blue left in my eye. I dont understand why I need to do the dialtoer drop considering that I have atrophy meaning that my pupil wont go down. What is the point of doing this if my eye is going to get stuck even more open then be4. then yesterday? it is a known fact tha tpeople with blue eyes have a harder time coming off the dialter drops. I dont undrstand? So im not doing them till she calls me back. Im skeptical about the Durezol drops now cause it saws in the paper work that if you take them more the 10 days that you can/will get glaucoma. This is absolutly insane. I'm very upset with my doctor. I feel that she could have found out sooner that I had this herpies of the eye. I'm scared and feel all alone! I dont know what to do or who to see. I want to get a second opinion. I live in FL but im willing to travel to NY to someone that is highly quilified and can give me some answers. My present Doctor was very short tempered with me yesterday and I felt intimated around her. I now quetion her as a doctor. due to the perdictment that im currently in. IM nt trying to blame. But i really need some answers.
My doctor told me way back when i fist stared with her that she didn't think it was Herpetic. and now she claims that she "missed it". I'm angry, confused,and sad! I just dont know what to do anymore. All my blood results come back negitive!
Any idea's would be much appreciated..
Thanks for listening to me and my saga...
H.

MikeBartolatz
Registered User
(4/3/09 11:24 am)


Re: I'm confused... Any idea's?
welcome to the group!

I am sorry that you have such a terrible case of iritis in the eye from the herpes virus (herpes simplex I presume)
Herpes viral uveitis is a VERY difficult thing to treat in some cases and the antiviral med is a MUST along with the steroid drops to stop the inflammation. hopefully the Durezol will quiet the eye for you soon. the reason it is being used is that it penetrates better to the iris and reduces inflammation more than pred forte and it only requires half the number of drops to do the same job as pred forte making it much easier for the patient to comply with dosing during the course of the day) the herpes virus can cause the muscle that opens and closes the eye to no longer function. it can also cause the surface of the iris to shed causing possible glaucoma as can a 360 degree adhesion between the iris and the lens. using the dilating drop relaxes muscles and also reduces the fluid produced by the cilary body. reduces pain because of this. Glaucoma is a significant problem with the herpes virus because the material sloughed off the iris can plug the drain as well as the cells shed during the inflammatory process.

please do as the specialist has recommended, I assume it is DR Janet Davis at Bascom Palmer as she is one of the best specialists in your State. If you wish a second opinion, then I suggest Dr Foster in Cambridge Mass. USA. but I don't know if he would change treatment as what you are on is the only thing I know of for herpes related uveitis.

once this is under control, a contact lens painted to look like your other eye can be used to help with both light coming into your eye and to make it look 'normal' in a closed postion can be ordered for you. keeping too much light from entering your eye is very important because it can damage your retina.

get some polarized wrap around sunglasses in the darkest color you can find to prevent ultraviolet light from damaging the eye. if you wear glasses, you can go to Walmart optical and buy polar optics fit over sunglasses for about 4O dollars a pair. I use dark green on sunny days and brown ones inside while on the computer and outside on overcast days to prevent damage to my eyes. I don't have herpetic uveitis but I have intra ocular lenses implanted from cataract surgery which do not prevent UV light from damaging my eyes.

you have been dealt a terrible form of uveitis because it can do so much damage quickly. the antiviral medication will be needed for a very long time to prevent the virus from coming out of hiding and traveling up a nerve in the eye to the back of the eye where it can be very serious.
it can attack the retina which can cause acute retinal necrosis. your visits to the specialists must have a 'to be seen as needed' type of appointment should your vision change in any way so that the specialst can watch for and treat this should it occur.

I'm not trying to scare you but to educate you about herpetic uveitis. my own primary care physician developed this and has a contact similar to what I mentioned earlier. He is doing quite well. He was also glad that I could help him through his uveitis as it scared the heck out of him.

you will be ok and your vision should improve once your eyes are quiet. you are also very fortunate to have a highly trained opthalmologist on your team.

there are two types of things, Cells and flare which the doctors mentioned. inflammation is graded on a scale of 1 to 4 is the amount of cells the doctor sees through the slit lamp microscope. Flare is protein shed by them and is also graded on a scale of 1 to 4. it causes vision to be hazy. eventually the haze will disappear.

Please ask any questions you may have and I'll do my best to help you. I know how scary this stuff is. we are all here to listen when you need to vent too. getting all of this out to people who understand is important. this very stressful situation needs to reduced for you so that you can heal.

Wishing you quiet eyes,\
Mike (facilitator Learning about Ocular Inflammatory Disease)

blubird2167
Registered User
(4/3/09 4:31 pm)


Re: I'm confused... Any idea's?
thanks for your kind words. You mentioned a woman named Janet. Ive never heard of her. I'm seeing Dr. Grace Levy~Clark at St Luke's In St. Petersburg. And in all honesty, she was very short tempered with me yesterday when i got this bad news. I also spoke to her on the phone today and her tone again was not nice or reassuring. When I first went to her, she seemed reassuring and nice. Now I dont know if she is having a bad day or what but her tone has completely changed.
Ive made an app. with Dr. Foster for April, 15th . I would like to get in sooner if possible.
I'm all shaken up since this. My life has changed and i'm scared of not knowing what's going to happen. Im looking for a doctor who will take the time to explain to me what's going on without getting mad at me like my present doctor does. However a second optinion would is something that I need to do for me.
I will look up This janet in miami. I'm looking for the best of the best. I wish that there was a group that met in person about this. Like a suport group where I can meet others like me. IM glad to hear that im not alone. I never heard of this Uveitis before this. I was fine one day then the next was in this terrible eye saga. All Ive been doing is crying, I just cannot stop. I really need to cause its giving me a huge head ache and im sure its not helping my eye. I feel like im losing my mind...
thanks

MikeBartolatz
Registered User
(4/3/09 6:44 pm)


Re: I'm confused... Any idea's?
there are two doctors that I can recommend to you in Florida, DR Perez or DR Janet Davis at Bascom Palmer eye institute. DR Perez trained under Doctor Foster by the way so he is up to speed on all of this stuff.

Dr Foster is the BEST specialist in the World. He can substantiate your diagnosis or change it if what he sees isn't herpes sx related. I know that DR Perez will work with Dr Foster. I'll get the contact information for him so that he can implement whatever DR Foster recommends.

Please try to calm down, this stuff can tear you up quickly. take a few deep breaths I'm around most of the day. I am three hours earlier than you. if you would like to 'talk' I can provide you a private message to line things up. or you can email me with your home phone number and a time and I can call. my email is oldefart@hotmail.com

Wishing you the very best,
mike Bartolatz

MikeBartolatz
Registered User
(4/3/09 6:45 pm)


Re: I'm confused... Any idea's?
Victor L. Perez, MD Background | Publications
Professor of Ophthalmology
University of Miami School of Medicine
Bascom Palmer Eye Institute (Website)
900 NW 17th St.
Miami, FL 33136
Appointments: (305) 243-2020 | Email

MikeBartolatz
Registered User
(4/3/09 6:46 pm)


Re: I'm confused... Any idea's?
Janet Davis, MD Background | Publications
Professor of Ophthalmology
University of Miami School of Medicine
Bascom Palmer Eye Institute (Website)
900 NW 17th St.
Miami, FL 33136
Appointments: (305) 243-2020 | Office: (305) 326-6377

Webmaster
Administrator
(4/5/09 4:58 pm)


Re: I'm confused... Any idea's?
Dr. Perez treated me and is superb. He trained for several years with Dr. Foster, so I would think that it would be of value, if possible, to see Dr. Perez. The can work as a team to help you.

I saw your other post. In NYC, Michael Samson is the specialist to see. Also part of the Foster training heritage, so there would also be some continuity there.

Liz

Webmaster
Administrator
(4/5/09 5:00 pm)


Re: I'm confused... Any idea's?
If your sitution is urgent, which it is, call back Dr. Foster's office. Ask to speak with Debbie. Indicate that you were referred by the support group and that it is an urgent situation and that you have to travel. They will fit you in as soon as you can get there. Just call.

Liz

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