Follow up apt - and not the best news
I had a follow up apt with Doctor today since my vision has still not recovered. There was good news and bad news.... What should I do first.... I guess the good news, unfortunately it is shorter.
Good news: Pressure is 12 and I am still attached. I have now made it to 11 1/2 weeks.... and still counting, and on that end, things are looking good.
Bad news: My swelling and inflammation is not getting any better on 30 mg of prednisone. My vision is still very very blurry, I had to up my magnifier to be able to use the computer. The dimness seems to be better, but hard to tell with my vision being blurry. Doctor found bleeding in my retina on this apt. She was not happy. I ended up having a fuoreseene done too. I hate these. What they are, is they take pictures of your eye as they inject fluorescent die into your arm. These make me very sick to my stomach. But this experience was great. I did not get sick, they pushed the die very slow and only had to do half the dose. Of course, the other side effects are more annoying than anything else... not to be TMI but they make you dehydrated and you pee very yellow. So, I was constantly thirsty last night, and peeing all the time. What these pictures do is show where there is leaking and how bad it is. Doctor said the leaking is not bad, but definitely there and it is the leaking blood that is making my vision bad.
The biggest problem is we are not sure why I have inflammation. My reticert should be working, the other problem is, Doctor is not sure what to do. I should have enough steroids on board to get rid of any inflammation. There is a medication to get rid of the leaking blood vessles, and I have had it before (Avastin). It is an injection directly into the eye that will cause the blood vessles to retract.... but with the blood vessle, the scar we have been watching will also retract, and that could cause another detachment. She does not want that. She could also inject me with steroids, but she didn't want to do that because it would give another scar that my retina could cause to get bigger and then detach.
I have had Avastin before about 6 years ago following my glaucoma surgery where I developed my "low pressure system" as John refers to it as, when my pressure got way too low for too long, and I had a blood vessle pop through my retina and cause leaking below my retina and I had a huge bubble of fluid below my retina. I asked the doctor if it looked like that, and she said no. It looked different and it was not in the same spot, this is on the outside of my central scar.
After some talk, and a phone call to my inflammatory disease specialist, who was not there when I had my apt, we decided to try putting me on 60 mg of prednisone for week and come back in next week.... and we will see what happens. The side effects from this dose of steroids will not be fun. Previously I developed headaches (which are not returning on 30 mg), facial pains (the feeling of brain freeze, just down the side of my face), steroidal acne, and the fact that I will have a harder time sleeping. Not looking forward to these side effects... oh and these do not include the other ones like eating like crazy, blood sugar problems, and crankyness. So, I have a feeling pain killers will be my friend, even though I hate taking them.
Please keep praying, hopefully things will improve... just another battle with my Multifocal Chorioditis....
Good news: Pressure is 12 and I am still attached. I have now made it to 11 1/2 weeks.... and still counting, and on that end, things are looking good.
Bad news: My swelling and inflammation is not getting any better on 30 mg of prednisone. My vision is still very very blurry, I had to up my magnifier to be able to use the computer. The dimness seems to be better, but hard to tell with my vision being blurry. Doctor found bleeding in my retina on this apt. She was not happy. I ended up having a fuoreseene done too. I hate these. What they are, is they take pictures of your eye as they inject fluorescent die into your arm. These make me very sick to my stomach. But this experience was great. I did not get sick, they pushed the die very slow and only had to do half the dose. Of course, the other side effects are more annoying than anything else... not to be TMI but they make you dehydrated and you pee very yellow. So, I was constantly thirsty last night, and peeing all the time. What these pictures do is show where there is leaking and how bad it is. Doctor said the leaking is not bad, but definitely there and it is the leaking blood that is making my vision bad.
The biggest problem is we are not sure why I have inflammation. My reticert should be working, the other problem is, Doctor is not sure what to do. I should have enough steroids on board to get rid of any inflammation. There is a medication to get rid of the leaking blood vessles, and I have had it before (Avastin). It is an injection directly into the eye that will cause the blood vessles to retract.... but with the blood vessle, the scar we have been watching will also retract, and that could cause another detachment. She does not want that. She could also inject me with steroids, but she didn't want to do that because it would give another scar that my retina could cause to get bigger and then detach.
I have had Avastin before about 6 years ago following my glaucoma surgery where I developed my "low pressure system" as John refers to it as, when my pressure got way too low for too long, and I had a blood vessle pop through my retina and cause leaking below my retina and I had a huge bubble of fluid below my retina. I asked the doctor if it looked like that, and she said no. It looked different and it was not in the same spot, this is on the outside of my central scar.
After some talk, and a phone call to my inflammatory disease specialist, who was not there when I had my apt, we decided to try putting me on 60 mg of prednisone for week and come back in next week.... and we will see what happens. The side effects from this dose of steroids will not be fun. Previously I developed headaches (which are not returning on 30 mg), facial pains (the feeling of brain freeze, just down the side of my face), steroidal acne, and the fact that I will have a harder time sleeping. Not looking forward to these side effects... oh and these do not include the other ones like eating like crazy, blood sugar problems, and crankyness. So, I have a feeling pain killers will be my friend, even though I hate taking them.
Please keep praying, hopefully things will improve... just another battle with my Multifocal Chorioditis....
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