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Medical professionals, your help *please*
Dear Medical professionals (and patients,)
(in advance, please excuse all the color below. I've tried making it easy to scan.)
I need a substitute for having a Fluorescein Angiography done. From what I've read from the Merck Manual, wouldn't an Ultrasound be a suitable substitute?
Here's why...
Hi,
My retina dr. wants to do a Fluorescein Angiography, but due to my past history with i.v. pushes, present complicated multiple autoimmune disorders and having *finally* read the symptoms and warnings of this proceedure (I forgot...also due to the dr.'s office "assuring" me that if anything happens they have "a dr. and a crash cart and they could bring me back")--there's no way on earth I'm going to do this (a chemical with such a high acididity that it can seriously and permanantly damage skin and nerves? Just too many red flags.)
A short foreward: My rheumatologist (I've mod-severe RA, Fibro, Sjorgren's, etc.) sent me to a cornea specialist for the Sjorgren's. The cornea specialist found the Sjorgren's to be very severe, no tears from the tear-producing test, etc.--he Rxed Restasis twice daily and wanted to get 4 punctal plugs in asap. The cornea specialist also said he thought he saw damage to the lens and retina of my left eye, but wanted me to see a retina specialist to be sure.
Toward the beginning of the appt. when all the "normal, read the big E" tests were done, the assistant looked at my *extensive* medical history and said there was so much there she'd enter it all in later.
Then, the dr's assistants had dialated my eyes to much that I could see *nothing* but colors and just feel shapes as they shifted by me. I was brought in to see the dr. and he examined my eyes (incl. with the little extra magnifying glass thing.) All the dr. really said was that he wanted to get a better look at my retnia, he'd just seen something there, that's all. The proceedure required the injection (by i.v.) of a simple vegetable-based dye that contained no iodine. If anything, it would just make me pee orange and have yellow-orange skin for a few days. (I've since read the ingredients of this dye and have found *no* vegetable base.)
I was shuffled out, then, into the waiting room still blinded. After a few minutes an assistant came up to me with a yellow sheet of paper on a clipboard and asked me to sign it o have the i.v. proceedure done, saying they did it on everyone. Before signing, I moved the clipboard back and forth with one eye closed, making out just a few words--not good words *at all*--words *nobody* had mentioned. Horrible *routine* things. The asst. tried showing me where the line to sign was, but instead, I asked to speak with the dr. to ask why this test was warranted, what did he see that he wanted to know more about. The assistant said something to the tune of, "oh, he's just looking for leaks," before trying to get me to sign again. As I waited for the dr. I asked the assistant to read the paper to me. She skimmed light-heartedly around the words. "No," I said (with eye dialating shades on and my hand over my eyes to block overhead light,) "My eyes are so dialated that I can't see the words myself. Please read the consent form, word for word, to me before I sign anything." Grudgingly, she did. Lowering her voice or racing past any warnings or side effects. She tried getting me to sign, but I said I wanted to speak with the dr. first.
The dr. came in and began speaking down to me (I was a good patient, an actually patient patient, waiting until he was done to explain that while I may be disabled and poor as a result, I've a B.A., an A.A. and did award-winning honors work.) So I was gracious and patient--I asked what he saw that warrented this test he wanted to conduct and he *slowly* explained that the dr. saw some pigmentation, "you know (pointing to his arm,) like a freckle? in my left eye. "Just my left eye?," I asked. In both eyes, he said, but more so in my left eye than my right. "What could cause what he's seeing?," I asked. He hemmed, hawed, mentioned it could have something to do with all of my autoimmune conditions, but maybe not, we'd have to see. Then I asked about something I'd heard was written on the consent form--pregnant women were never to have this proceedure...what do pregnant women do who have the same findings? I was told that if they could, they waited to do the test rather than risk the fetus; but in extreme cases, the mother might choose to override those cautions. Then I explained to the dr. that I liked him, feel like he knows what he's doing, feel like he probably already has an idea of what he's looking at and just wants to run the test to confirm it, but I wanted to wait until my rheumatologist came back from his vacation before embarking on somehing that could aggravate my AI conditions so severely (death's a big side effect.) With that ok-ed, I asked if I could ask 2 questions: the first--where can I find very, very, extremely dark glasses (as I'm mostly night-bound now.) He suggested that I contact a "low vision" group about that. Secondly, I asked why is light from above *so much more incredibly painful than light from any other direction? He got a strange puzzled look on his face, then closed the door behind him, and said he didn't know for sure why that would be (pause,) but this test might help him find the answer...(he trailed off here, finally snapped out of deep thinking mode, and agreed to see me after my rheumy came back. Each appt. is about 3 hrs, so bring something to read. I mentioned that due to my eyes right now, I haven't been able to sit down and read for over 6-8 months, then he mentined maybe books on tape
)
*So*, with all this in mind, would ultrasound be a reasonable substitution for the angiography? If not, what would/could be?
Also, (I've read up on this a bit, but would appreciate professional opinions, you know?): what are the likeliest causes of such pigmentation (given my history) and how concerned should I be? What could it have been that the dr. was surprised about when I mentioned that I'm completely intolerant and find light from above extremely, unbearably painful? Then, what kind of likliness would there be that these symptoms could lead to blindness or cancer? (You see, I'm hopefully, getting ready to start taking Biologic shots, Enbrel, for the RA, etc. I know there's a higher liklihood of lymphoma with that, but I'm just trying to gauge my risk factors with the eyes ahead of time.)
(p.s. Here's an idea of how much above lighting, or any lighting, daylight, etc. causes pain, spasms and suffering: about 70-80% of the time my face is red (more so on the left side where it's worse,) esp. when I've been trying to focus on an activity. *I'm learning to see things in a dark room by using a small book light *beneath* my eyes, shining only on the surface I'm tryin to see.* And, *here's the weird one*, not only do I find my face sore and tired from the spasms of trying to deal with the light and the fuzz, but I'm clinching my teeth *so* much at night, too, that a few days ago over morning oatmeal I found part of one of my molars had broken off from clinching from the eye strain and pain and I had to have it repaired, along with 2 other teeth, and I'm still only about 4 or 5 months since having my last cleanng and x-rays. The dryness I can see coming from Sjorgren's, but the face pain/strain is just a weird, but understandable, manifestation from the eyes, whatever their problem is.)
Thank you *so* much, I really do look forward to hearing from you soon!
Thanks again!
achyeye
(in advance, please excuse all the color below. I've tried making it easy to scan.)
I need a substitute for having a Fluorescein Angiography done. From what I've read from the Merck Manual, wouldn't an Ultrasound be a suitable substitute?
Here's why...
Hi,
My retina dr. wants to do a Fluorescein Angiography, but due to my past history with i.v. pushes, present complicated multiple autoimmune disorders and having *finally* read the symptoms and warnings of this proceedure (I forgot...also due to the dr.'s office "assuring" me that if anything happens they have "a dr. and a crash cart and they could bring me back")--there's no way on earth I'm going to do this (a chemical with such a high acididity that it can seriously and permanantly damage skin and nerves? Just too many red flags.)
A short foreward: My rheumatologist (I've mod-severe RA, Fibro, Sjorgren's, etc.) sent me to a cornea specialist for the Sjorgren's. The cornea specialist found the Sjorgren's to be very severe, no tears from the tear-producing test, etc.--he Rxed Restasis twice daily and wanted to get 4 punctal plugs in asap. The cornea specialist also said he thought he saw damage to the lens and retina of my left eye, but wanted me to see a retina specialist to be sure.
Toward the beginning of the appt. when all the "normal, read the big E" tests were done, the assistant looked at my *extensive* medical history and said there was so much there she'd enter it all in later.
Then, the dr's assistants had dialated my eyes to much that I could see *nothing* but colors and just feel shapes as they shifted by me. I was brought in to see the dr. and he examined my eyes (incl. with the little extra magnifying glass thing.) All the dr. really said was that he wanted to get a better look at my retnia, he'd just seen something there, that's all. The proceedure required the injection (by i.v.) of a simple vegetable-based dye that contained no iodine. If anything, it would just make me pee orange and have yellow-orange skin for a few days. (I've since read the ingredients of this dye and have found *no* vegetable base.)
I was shuffled out, then, into the waiting room still blinded. After a few minutes an assistant came up to me with a yellow sheet of paper on a clipboard and asked me to sign it o have the i.v. proceedure done, saying they did it on everyone. Before signing, I moved the clipboard back and forth with one eye closed, making out just a few words--not good words *at all*--words *nobody* had mentioned. Horrible *routine* things. The asst. tried showing me where the line to sign was, but instead, I asked to speak with the dr. to ask why this test was warranted, what did he see that he wanted to know more about. The assistant said something to the tune of, "oh, he's just looking for leaks," before trying to get me to sign again. As I waited for the dr. I asked the assistant to read the paper to me. She skimmed light-heartedly around the words. "No," I said (with eye dialating shades on and my hand over my eyes to block overhead light,) "My eyes are so dialated that I can't see the words myself. Please read the consent form, word for word, to me before I sign anything." Grudgingly, she did. Lowering her voice or racing past any warnings or side effects. She tried getting me to sign, but I said I wanted to speak with the dr. first.
The dr. came in and began speaking down to me (I was a good patient, an actually patient patient, waiting until he was done to explain that while I may be disabled and poor as a result, I've a B.A., an A.A. and did award-winning honors work.) So I was gracious and patient--I asked what he saw that warrented this test he wanted to conduct and he *slowly* explained that the dr. saw some pigmentation, "you know (pointing to his arm,) like a freckle? in my left eye. "Just my left eye?," I asked. In both eyes, he said, but more so in my left eye than my right. "What could cause what he's seeing?," I asked. He hemmed, hawed, mentioned it could have something to do with all of my autoimmune conditions, but maybe not, we'd have to see. Then I asked about something I'd heard was written on the consent form--pregnant women were never to have this proceedure...what do pregnant women do who have the same findings? I was told that if they could, they waited to do the test rather than risk the fetus; but in extreme cases, the mother might choose to override those cautions. Then I explained to the dr. that I liked him, feel like he knows what he's doing, feel like he probably already has an idea of what he's looking at and just wants to run the test to confirm it, but I wanted to wait until my rheumatologist came back from his vacation before embarking on somehing that could aggravate my AI conditions so severely (death's a big side effect.) With that ok-ed, I asked if I could ask 2 questions: the first--where can I find very, very, extremely dark glasses (as I'm mostly night-bound now.) He suggested that I contact a "low vision" group about that. Secondly, I asked why is light from above *so much more incredibly painful than light from any other direction? He got a strange puzzled look on his face, then closed the door behind him, and said he didn't know for sure why that would be (pause,) but this test might help him find the answer...(he trailed off here, finally snapped out of deep thinking mode, and agreed to see me after my rheumy came back. Each appt. is about 3 hrs, so bring something to read. I mentioned that due to my eyes right now, I haven't been able to sit down and read for over 6-8 months, then he mentined maybe books on tape
)*So*, with all this in mind, would ultrasound be a reasonable substitution for the angiography? If not, what would/could be?
Also, (I've read up on this a bit, but would appreciate professional opinions, you know?): what are the likeliest causes of such pigmentation (given my history) and how concerned should I be? What could it have been that the dr. was surprised about when I mentioned that I'm completely intolerant and find light from above extremely, unbearably painful? Then, what kind of likliness would there be that these symptoms could lead to blindness or cancer? (You see, I'm hopefully, getting ready to start taking Biologic shots, Enbrel, for the RA, etc. I know there's a higher liklihood of lymphoma with that, but I'm just trying to gauge my risk factors with the eyes ahead of time.)
(p.s. Here's an idea of how much above lighting, or any lighting, daylight, etc. causes pain, spasms and suffering: about 70-80% of the time my face is red (more so on the left side where it's worse,) esp. when I've been trying to focus on an activity. *I'm learning to see things in a dark room by using a small book light *beneath* my eyes, shining only on the surface I'm tryin to see.* And, *here's the weird one*, not only do I find my face sore and tired from the spasms of trying to deal with the light and the fuzz, but I'm clinching my teeth *so* much at night, too, that a few days ago over morning oatmeal I found part of one of my molars had broken off from clinching from the eye strain and pain and I had to have it repaired, along with 2 other teeth, and I'm still only about 4 or 5 months since having my last cleanng and x-rays. The dryness I can see coming from Sjorgren's, but the face pain/strain is just a weird, but understandable, manifestation from the eyes, whatever their problem is.)
Thank you *so* much, I really do look forward to hearing from you soon!
Thanks again!
achyeye