Blind and Visually Impaired Community
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Afraid and frustrated. (self.Blind)
submitted by nervous43406
Forgive the throwaway, I'm not sure where else to go with this but I'm not comfortable with my medical problems being on my main account's post history right now.
I (23F) left my house for the first time in six months of lockdown to see an eye doctor following several months of worsening visual problems (floaters and dark streaks, flashing lights, blurry vision in one eye - consistently blurry at a distance, on and off up close, sometimes bad enough that I can't read at all or have double vision and sometimes fine - rainbow halos and glare around lights, poor night vision, light sensitivity, and most troublesomely, a noticeable, and worsening, amount of peripheral vision loss in the blurrier eye including having very little upward vision compared to the other side.)
I was at least able to rule out a few things from the tests done, in that my retinas looked normal and my IOP was normal when measured.
However, the rest of the appointment ended up feeling incredibly dismissive. I felt like any concern I raised got written off after he'd ascribed my problems either to migraines (I don't get migraines, I have most of the visual disturbances all the time, all I mentioned was having had *one* bad headache in the past few days when I've been having symptoms for months and he kept suggesting migraines) or poor circulation that I should try and improve with exercise. He apparently tested my peripheral vision somehow (by checking *something* while my eyes were dilated that he didn't even tell me he was doing, nor asked me anything about what I could actually see, I still don't even understand what he did) but all he had to say to me about it was that a *slight* difference from eye to eye is normal, and completely brushed off me trying to point out that it's not slight, I can't even see very bright light past about 70 degrees temporally and maybe 25 degrees vertically on that side. He also told me that most causes of peripheral vision loss can be reversed, which is the opposite of everything I've ever read about it.
All I got told "conclusively" was that I'm slightly nearsighted and the thing about getting light flashes and floaters as some kind of cortical problem from poor circulation. No answers about any of the symptoms that don't fit into that, he just didn't acknowledge them at all. No recommendation to see another doctor or have any further testing of any kind, just "you're fine, see you later." I asked about options for light sensitivity since I can't even keep my blinds open during the day without pain and have to work on a computer most of the day, and the response I got was "you already have sunglasses."
I'm autistic and have quite bad social anxiety and that makes me freeze up and get talked over a lot more than I'd like. I wish I'd tried to speak up more than I did, but everything I *did* try and bring up was a dead end.
I'm definitely glad there's no obvious retinal tear or acute glaucoma or blatant signs of disease or anything, but in some ways I feel even more anxious than I did beforet (with the added fear of having risked COVID exposure when I live with a high risk parent after sheltering in place for months for ultimately no answers) and immensely frustrated at what feels like one of the most fruitless doctor's appointments I ever had. I'd very much like to believe that I am 100% fine, but I don't feel reassured at all, and I don't know if that's reasonable or if all of this is me completely overreacting and wasting money and time.
Sorry for the massive TL;DR and for if this is the wrong place for this, given that my impairment is still so comparatively minor. I'm looking into other optometrists that have telehealth options to see if it's possible for me to get a second opinion before risking another in person appointment, but right now I'm just completely at a loss and feeling awful about it. I almost feel like I'd be better off waiting to see if things get worse to the point they can't be ignored before I even try again, but I know that's irrational.
Has anyone else experienced this kind of thing when first experiencing vision problems? I was a lot more prepared for bad answers than no answers.
I (23F) left my house for the first time in six months of lockdown to see an eye doctor following several months of worsening visual problems (floaters and dark streaks, flashing lights, blurry vision in one eye - consistently blurry at a distance, on and off up close, sometimes bad enough that I can't read at all or have double vision and sometimes fine - rainbow halos and glare around lights, poor night vision, light sensitivity, and most troublesomely, a noticeable, and worsening, amount of peripheral vision loss in the blurrier eye including having very little upward vision compared to the other side.)
I was at least able to rule out a few things from the tests done, in that my retinas looked normal and my IOP was normal when measured.
However, the rest of the appointment ended up feeling incredibly dismissive. I felt like any concern I raised got written off after he'd ascribed my problems either to migraines (I don't get migraines, I have most of the visual disturbances all the time, all I mentioned was having had *one* bad headache in the past few days when I've been having symptoms for months and he kept suggesting migraines) or poor circulation that I should try and improve with exercise. He apparently tested my peripheral vision somehow (by checking *something* while my eyes were dilated that he didn't even tell me he was doing, nor asked me anything about what I could actually see, I still don't even understand what he did) but all he had to say to me about it was that a *slight* difference from eye to eye is normal, and completely brushed off me trying to point out that it's not slight, I can't even see very bright light past about 70 degrees temporally and maybe 25 degrees vertically on that side. He also told me that most causes of peripheral vision loss can be reversed, which is the opposite of everything I've ever read about it.
All I got told "conclusively" was that I'm slightly nearsighted and the thing about getting light flashes and floaters as some kind of cortical problem from poor circulation. No answers about any of the symptoms that don't fit into that, he just didn't acknowledge them at all. No recommendation to see another doctor or have any further testing of any kind, just "you're fine, see you later." I asked about options for light sensitivity since I can't even keep my blinds open during the day without pain and have to work on a computer most of the day, and the response I got was "you already have sunglasses."
I'm autistic and have quite bad social anxiety and that makes me freeze up and get talked over a lot more than I'd like. I wish I'd tried to speak up more than I did, but everything I *did* try and bring up was a dead end.
I'm definitely glad there's no obvious retinal tear or acute glaucoma or blatant signs of disease or anything, but in some ways I feel even more anxious than I did beforet (with the added fear of having risked COVID exposure when I live with a high risk parent after sheltering in place for months for ultimately no answers) and immensely frustrated at what feels like one of the most fruitless doctor's appointments I ever had. I'd very much like to believe that I am 100% fine, but I don't feel reassured at all, and I don't know if that's reasonable or if all of this is me completely overreacting and wasting money and time.
Sorry for the massive TL;DR and for if this is the wrong place for this, given that my impairment is still so comparatively minor. I'm looking into other optometrists that have telehealth options to see if it's possible for me to get a second opinion before risking another in person appointment, but right now I'm just completely at a loss and feeling awful about it. I almost feel like I'd be better off waiting to see if things get worse to the point they can't be ignored before I even try again, but I know that's irrational.
Has anyone else experienced this kind of thing when first experiencing vision problems? I was a lot more prepared for bad answers than no answers.
UpsideDownwardSpiral 5 points 2y ago
You need a second opinion. A teledoc appointment may be good to let your new doctor know what is going on- and may be a good way to gauge how seriously they are going to take your (very valid) concerns. But ultimately you are going to need an actual exam with a doctor that won't dismiss your symptoms.
I am not very good at advocating for myself, I find that taking notes with me about the things that need to be addressed is a good way to be taken more seriously.You may have different experiences, but I make a point to look for younger female doctors because I feel like they tend to be less dismissive and more engaging when explaining a diagnosis that they are trying to make. Ultimately, though, it comes down to luck of the draw with whomever you end up seeing.
Best of luck, I'm sorry your concerns were dismissed so quickly.
I am not very good at advocating for myself, I find that taking notes with me about the things that need to be addressed is a good way to be taken more seriously.You may have different experiences, but I make a point to look for younger female doctors because I feel like they tend to be less dismissive and more engaging when explaining a diagnosis that they are trying to make. Ultimately, though, it comes down to luck of the draw with whomever you end up seeing.
Best of luck, I'm sorry your concerns were dismissed so quickly.
nervous43406 [OP] 1 points 2y ago
I know I need to have an actual exam, I just don't want to risk another in person appointment going this badly given the pandemic. I figured telehealth would be a way to figure out if a new doctor is more willing to listen to take me seriously, like you said, and then try to get in for a proper exam once I know I didn't get exposed to COVID this time.
Thank you for the reply.
Thank you for the reply.
Rethunker 1 points 2y ago
I'd agree with others that you need a second opinion. Another way to think of it is that you need a second, different doctor to give you first opinions from now on.
Consider reading the book When Doctors Don't Listen. I attended a signing with Dr. Leana Wen, one of the co-authors, and I was impressed at how straightforward the message was. Dr. Wen describes how to prepare for a visit and how to advocate for yourself.
$1
You have a lot of great details in your post. Presenting all of them can take time. If you write them up in a prioritized list, you could share that document with your (new) doctor. Discuss the top priorities. Make it clear how your everyday life is affected. Tell the doctor what you want to accomplish in the visit. You can even say that you're concerned your careful observation will be brushed off.
Tracking down medical issues can take time. But you're taking the right steps, and it sounds like you've learned something important: some doctors won't be helpful to you. You'll have a better idea next time how to identify whether the doctor is a good fit for you.
Consider reading the book When Doctors Don't Listen. I attended a signing with Dr. Leana Wen, one of the co-authors, and I was impressed at how straightforward the message was. Dr. Wen describes how to prepare for a visit and how to advocate for yourself.
$1
You have a lot of great details in your post. Presenting all of them can take time. If you write them up in a prioritized list, you could share that document with your (new) doctor. Discuss the top priorities. Make it clear how your everyday life is affected. Tell the doctor what you want to accomplish in the visit. You can even say that you're concerned your careful observation will be brushed off.
Tracking down medical issues can take time. But you're taking the right steps, and it sounds like you've learned something important: some doctors won't be helpful to you. You'll have a better idea next time how to identify whether the doctor is a good fit for you.
BlueIr1ses 1 points 2y ago
Did you see an optometrist or an ophthalmologist? You are going to want to see an ophthalmologist (MD), preferably in a practice that has various specialists and that is affiliated with a major eye hospital. In addition to a visual field test, you may want to ask for an ERG and not all practices have an ERG machine available. I'm sorry this first doctor wasn't very helpful.
nervous43406 [OP] 1 points 2y ago
I saw an optometrist. I'd expected he might refer me to an ophthalmologist if he didn't find anything, but that didn't end up happening. I'll look into eye hospitals in my city and what I need to do to get a referral to an ophthalmologist. Thank you for the reply.
Revolutionary_Cod460 1 points 2y ago
I know you got told your IOP was low but what your saying is exactly what I had. Rainbow around lights ETC time after time my IOP was 19-20 so no real concern but the staff in Ireland are generally good at chasing an issue like this. Suddenly one test came back with an IOP of 45 and that began a road of 3 emergency surgeries. If there’s an eye specific A and E in your area go and get it checked. Don’t worry about appointment just go. Keep going till your satisfied, I got many low IOP results but I was still losing my vision fast. I don’t mean to panic you but I kinda lived your nightmare. If you want to chat further don’t be afraid to DM me. Main thing is relax and find someone who can help.
nervous43406 [OP] 1 points 2y ago
Thank you for the reply. I'll keep looking into it, that something could slip past like this is exactly what I'm most worried about. I don't know about any kind of eye specific urgent care near me but I'll see what options I have.
Revolutionary_Cod460 1 points 2y ago
If it gets bad don’t worry about going eye specific. I wish you the very best from Ireland. As I said just message me privately if I can help.
fairlyfairies 1 points 2y ago
I'm really sorry for your bad experience, I know what that's like all too well, I had the same thing happen before I found a specialist for my eye disease. I had flashes and floaters that kept getting worse and worse but no one cared, until I found my current doctor. I'm also not sure why he didn't do a visual field test, where you press a button when you see the dot, and instead just did a clinical exam.
Please get a second opinion! If you want to pm me your location I may be able to reccomend some good doctors.
Please get a second opinion! If you want to pm me your location I may be able to reccomend some good doctors.
nervous43406 [OP] 1 points 2y ago
I ended up calling the office back and found out that they're only doing visual field tests at another location, but I really don't understand why I wasn't told this either when I was making the appointment or while I was there. I basically just got told I can make another appointment at the other location and get it done if I *want* to, but the doctor didn't think it was relevant. I'm definitely not going back to this doctor.
Thanks for the reply, I'll send you a pm.
Thanks for the reply, I'll send you a pm.
je97 1 points 2y ago
You experienced a bad doctor, that's the sort of doctor that is opening himself up to major disciplinary problems in the future if he dismisses things you say. I also have autism complete with being totally blind, and without reservation I record visits to the doctor, you don't know when they are coming to come in useful. If you live in the UK or another single-party consent area, you don't even need to ask for permission however when you do I often find they become a lot more professional if they're being recorded. Get a second opinion and record that shit: not only could it make the doctor act more professionally, if you go to court it'll be cut and dry.
nervous43406 [OP] 1 points 2y ago
I've never even thought about recording a doctor's appointment before, I'll definitely look into the law around that where I live (Canada) and do that next time. Thank you.
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