Hi all! I’m from the US, but decided I had to post here because I haven’t found any other forum as active as this one! So some things may be different regarding how healthcare works, etc. I’m wondering what other people have experienced when dealing with bleeds that are visible. Quick history: I’m 29 and control has always been a rollercoaster for me, but I’m trying my best. In November of 2018 a floater in my eye got me nervous and I rushed to the Dr. Was diagnosed with moderate NPDR with macular edema in both eyes. Had 1 round of micro pulse laser done in each eye. My left eye is better and has perfect vision. The laser did improve my right eye a little as I did make progress on the chart and I know laser does not promise any improvement at all. Right eye is not what it once was, but it’s still good vision.
At my last follow up I was told it had moved to proliferative in a matter of no time. Here’s where I’ve found a HUGE difference between US and UK. The doctors here LOVE to push anti-VEGF. My problem and it’s embarrassing and makes no sense even to myself considering I do daily injections since 4 years old is that I have severe anxiety when it comes to needles. I couldn’t even stand him talking about the treatment, it’s really bad and controlling what I choose for treatment. He wanted to treat my edema with injections and I refused that’s the only reason I had micropulse done.
Now I have a bleed in my left eye which has me petrified because it’s my better eye. But I’ve read horrible stories on here that the hemorrhage basically blocks all vision. That is not the case for me at all. I have a spider like shape in the upper left corner of my vision. It moves with my eye movements. Dark blob like a body of a spider and than legs coming off of it which are thinner and more transparent. That’s all I see when inside, but once I step outside into sunlight I see hundreds of tiny little spots all over my vision. Still quite transparent though. Almost like a very thin layer of dust on a lens. My visual acuity has not suffered and I can still read and see but with this dancing spider in the corner. The oddest thing to me is that even with my eyes closed I can still see it dancing around!
I called my Dr and he told me it must be a bleed and to come in within a week. I now have an appointment set up with a new Dr who is said to be much more thorough with his patients and is willing to listen to their concerns. My other Dr is very set in his ways and would not take the time to explain anything to me or understand how I was feeling and he’s still pushing anti-VEGF for the PDR.
I’m sorry this post ended up so long I am just petrified of where it all goes from here. It absolutely kills me than an anxiety is so bad that it’s making life changing decisions for me and I don’t know what’s normal and what’s not with this bleeding! Thank you to anyone who reads this novel and has any input lol.
At my last follow up I was told it had moved to proliferative in a matter of no time. Here’s where I’ve found a HUGE difference between US and UK. The doctors here LOVE to push anti-VEGF. My problem and it’s embarrassing and makes no sense even to myself considering I do daily injections since 4 years old is that I have severe anxiety when it comes to needles. I couldn’t even stand him talking about the treatment, it’s really bad and controlling what I choose for treatment. He wanted to treat my edema with injections and I refused that’s the only reason I had micropulse done.
Now I have a bleed in my left eye which has me petrified because it’s my better eye. But I’ve read horrible stories on here that the hemorrhage basically blocks all vision. That is not the case for me at all. I have a spider like shape in the upper left corner of my vision. It moves with my eye movements. Dark blob like a body of a spider and than legs coming off of it which are thinner and more transparent. That’s all I see when inside, but once I step outside into sunlight I see hundreds of tiny little spots all over my vision. Still quite transparent though. Almost like a very thin layer of dust on a lens. My visual acuity has not suffered and I can still read and see but with this dancing spider in the corner. The oddest thing to me is that even with my eyes closed I can still see it dancing around!
I called my Dr and he told me it must be a bleed and to come in within a week. I now have an appointment set up with a new Dr who is said to be much more thorough with his patients and is willing to listen to their concerns. My other Dr is very set in his ways and would not take the time to explain anything to me or understand how I was feeling and he’s still pushing anti-VEGF for the PDR.
I’m sorry this post ended up so long I am just petrified of where it all goes from here. It absolutely kills me than an anxiety is so bad that it’s making life changing decisions for me and I don’t know what’s normal and what’s not with this bleeding! Thank you to anyone who reads this novel and has any input lol.
