I created an account specifically to comment on this thread. I read your story, and felt the need to comment about it. Your youtube videos convinced me that you are sincere about your harrowing story and this is not some “Russian” scam (even though you’re Serbian).
I’m going to provide you with my opinion based on the medical records you posted in your youtube video. To the doubters out there: this looks totally legitimate. It would be unethical to pretend that I can give you an accurate diagnosis, but I hope the following helps. Not having seen retinal and optic nerve images, it’s hard to give an impression of some of the diagnoses. All I can say is that some of them are inconsistent. I will also say that Russian doctors do a lot of suspect procedures that are unsupported by scientific evidence. I have no idea about the quality of Serbian ophthalmologists. I’m sure there are good ones and bad ones.
The retinal diagnosis at 2:37 says birdshot chorioretinopathy. Given the test that was performed, this seems very plausible. The bottom part recommends you get tested for HLA-B29 (I’ll explain below). What this means: birdshot chorioretinopathy is an autoimmune disorder that affects the retina and the choroid (which is vascular tissue behind the retina). This is a potentially-blinding disease that often requires aggressive treatment with high-dose corticosteroids or immunosuppressive drugs. These are nasty drugs that have a lot of bad side effects. Although it’s not necessary for diagnosis, doctors will perform HLA-B29 testing to support the diagnosis. HLA-B29 is a Human Leukocyte Antigen protein found in white blood cells. HLAs play an important role in the immune response. In birdshot, your immune system attacks proteins in your own retina because of a defective form of HLA-B29.
You show another report with a diagnosis of “retinal dystrophy”, which is completely different from birdshot. This diagnosis appears to come from a different clinic. “Retinal dystrophy” is a general term for dozens of inherited eye diseases, and may be a misdiagnosis. Also, the clinic that diagnosed you with a peripheral retinal dystrophy is giving you some highly questionable treatments (retinalamin and kortexin) that are being marketed in Russia. As far as I know, these are not used or approved in Western countries. See my comment above about Russian doctors. The same goes for Russian biomedical “scientists”. Their professional standards would be considered unethical in most of the world.
So what does this have to do with glaucoma? The short answer is that I’m not sure. There are many types of glaucoma. You’ve had diagnoses of “congenital glaucoma” and “juvenile glaucoma”. These are different things: you almost certainly do not have congenital glaucoma which is present at birth. Juvenile glaucoma is just regular glaucoma that happens early in life. This type of glaucoma is often genetic. I strongly suspect that your glaucoma has something to do with birdshot chorioretinopathy. This would be what we call a secondary glaucoma.
People with birdshot are often given strong corticosteroids. Your other video shows you getting an injection to your left eye. Although I don’t know what you’re being given, it might be a corticosteroid to control your birdshot (corticosteroids suppress the immune system). You may even have been given oral corticosteroids in the past. High doses of corticosteroids can cause elevated intraocular pressure, glaucoma and cataracts. To simplify things: high eye pressure cuts off blood flow to the optic nerve and kills off nerve fibers that communicate with the brain. Once the nerve gets damaged, it is damaged forever, and it does not regenerate. Hopefully, sometime in the future, we will be able to make nerves grow back using stem cells.
Your visual field results show exactly what you describe: the right eye is essentially blind, and the left eye has severe damage. It’s hard to tell what caused the vision loss. It’s probably a combination of the retinal disease and glaucoma. Either way, it is imperative to get both conditions under control.
The surgery you had was to insert an implant, called an Ahmed valve, into your eye. The valve does just what it sounds like it does: it drains the fluid from inside your eye to the outside. This keeps the pressure under control. Just like a plumbing valve, it allows liquid to flow from a high-pressure zone to a lower-pressure pipe and prevents back-flow. These procedures are quite standard for glaucoma specialists, but are often the last resort in severe glaucoma cases. While the right eye may be functionally blind, it is important that the pressure be kept under control because chronic high pressure will cause the eye to become very painful for a variety of reasons. Eye pain is some of the worst pain one can experience.
What concerns me most is that you’ve had open heart surgery and a stroke, and how all of these things might be related. In my opinion, these conditions are probably not coincidental. I realize that some people will accuse you of running a scam because they don’t see an obvious relationship. The easy counter argument is that autoimmune disorders often affect multiple organs. People may be more familiar with diseases such as Lupus, which is also an auto-immune disorder and can cause damage to many organs, including the eyes. How? Because autoimmune disorders are caused by your blood cells attacking your own tissue, and they can essentially attack anywhere blood flows.
My question about the heart surgery is whether it was for a valve issue. Heart valve disease can cause strokes from blood clots forming in the heart and making their way to the brain. Rheumatic fever is caused by streptococcus infection (sore throat or “strep throat”) during childhood in which the strep bacteria basically turn the immune system against your own tissue. My question would be: do you remember having untreated severe sore throat as a child? Also, do you have other conditions associated with rheumatoid fever such as arthritis?
I don’t know how much this post will help you, but it doesn’t seem like you’re getting the best care. This is very complicated, and you really need to be followed by a team of specialists with a coordinated medical plan. I can speculate about what’s happening based on the records you are showing, but it would be irresponsible to say much more. The frustrating part is that none of your physicians seem to have put the pieces together. Sub-specialists often micromanage each individual condition separately. A glaucoma specialist will manage your glaucoma, while a retinal specialist will manage your retinal condition, and you’ll have other doctors who won’t communicate with one-another. It may be that most, if not all, of your health issues are related. Young healthy men just don’t go downhill like you have in the past few years.
The important part is to get to the bottom of what’s really happening to your health. If you could arrange to have more documentation sent to me, I could talk to some specialist colleagues and get their professional opinions. I don’t have medical colleagues in Serbia, but I know people who know people. I am not a sub-specialist, just a concerned health care scientist and former clinician.
I’m going to provide you with my opinion based on the medical records you posted in your youtube video. To the doubters out there: this looks totally legitimate. It would be unethical to pretend that I can give you an accurate diagnosis, but I hope the following helps. Not having seen retinal and optic nerve images, it’s hard to give an impression of some of the diagnoses. All I can say is that some of them are inconsistent. I will also say that Russian doctors do a lot of suspect procedures that are unsupported by scientific evidence. I have no idea about the quality of Serbian ophthalmologists. I’m sure there are good ones and bad ones.
The retinal diagnosis at 2:37 says birdshot chorioretinopathy. Given the test that was performed, this seems very plausible. The bottom part recommends you get tested for HLA-B29 (I’ll explain below). What this means: birdshot chorioretinopathy is an autoimmune disorder that affects the retina and the choroid (which is vascular tissue behind the retina). This is a potentially-blinding disease that often requires aggressive treatment with high-dose corticosteroids or immunosuppressive drugs. These are nasty drugs that have a lot of bad side effects. Although it’s not necessary for diagnosis, doctors will perform HLA-B29 testing to support the diagnosis. HLA-B29 is a Human Leukocyte Antigen protein found in white blood cells. HLAs play an important role in the immune response. In birdshot, your immune system attacks proteins in your own retina because of a defective form of HLA-B29.
You show another report with a diagnosis of “retinal dystrophy”, which is completely different from birdshot. This diagnosis appears to come from a different clinic. “Retinal dystrophy” is a general term for dozens of inherited eye diseases, and may be a misdiagnosis. Also, the clinic that diagnosed you with a peripheral retinal dystrophy is giving you some highly questionable treatments (retinalamin and kortexin) that are being marketed in Russia. As far as I know, these are not used or approved in Western countries. See my comment above about Russian doctors. The same goes for Russian biomedical “scientists”. Their professional standards would be considered unethical in most of the world.
So what does this have to do with glaucoma? The short answer is that I’m not sure. There are many types of glaucoma. You’ve had diagnoses of “congenital glaucoma” and “juvenile glaucoma”. These are different things: you almost certainly do not have congenital glaucoma which is present at birth. Juvenile glaucoma is just regular glaucoma that happens early in life. This type of glaucoma is often genetic. I strongly suspect that your glaucoma has something to do with birdshot chorioretinopathy. This would be what we call a secondary glaucoma.
People with birdshot are often given strong corticosteroids. Your other video shows you getting an injection to your left eye. Although I don’t know what you’re being given, it might be a corticosteroid to control your birdshot (corticosteroids suppress the immune system). You may even have been given oral corticosteroids in the past. High doses of corticosteroids can cause elevated intraocular pressure, glaucoma and cataracts. To simplify things: high eye pressure cuts off blood flow to the optic nerve and kills off nerve fibers that communicate with the brain. Once the nerve gets damaged, it is damaged forever, and it does not regenerate. Hopefully, sometime in the future, we will be able to make nerves grow back using stem cells.
Your visual field results show exactly what you describe: the right eye is essentially blind, and the left eye has severe damage. It’s hard to tell what caused the vision loss. It’s probably a combination of the retinal disease and glaucoma. Either way, it is imperative to get both conditions under control.
The surgery you had was to insert an implant, called an Ahmed valve, into your eye. The valve does just what it sounds like it does: it drains the fluid from inside your eye to the outside. This keeps the pressure under control. Just like a plumbing valve, it allows liquid to flow from a high-pressure zone to a lower-pressure pipe and prevents back-flow. These procedures are quite standard for glaucoma specialists, but are often the last resort in severe glaucoma cases. While the right eye may be functionally blind, it is important that the pressure be kept under control because chronic high pressure will cause the eye to become very painful for a variety of reasons. Eye pain is some of the worst pain one can experience.
What concerns me most is that you’ve had open heart surgery and a stroke, and how all of these things might be related. In my opinion, these conditions are probably not coincidental. I realize that some people will accuse you of running a scam because they don’t see an obvious relationship. The easy counter argument is that autoimmune disorders often affect multiple organs. People may be more familiar with diseases such as Lupus, which is also an auto-immune disorder and can cause damage to many organs, including the eyes. How? Because autoimmune disorders are caused by your blood cells attacking your own tissue, and they can essentially attack anywhere blood flows.
My question about the heart surgery is whether it was for a valve issue. Heart valve disease can cause strokes from blood clots forming in the heart and making their way to the brain. Rheumatic fever is caused by streptococcus infection (sore throat or “strep throat”) during childhood in which the strep bacteria basically turn the immune system against your own tissue. My question would be: do you remember having untreated severe sore throat as a child? Also, do you have other conditions associated with rheumatoid fever such as arthritis?
I don’t know how much this post will help you, but it doesn’t seem like you’re getting the best care. This is very complicated, and you really need to be followed by a team of specialists with a coordinated medical plan. I can speculate about what’s happening based on the records you are showing, but it would be irresponsible to say much more. The frustrating part is that none of your physicians seem to have put the pieces together. Sub-specialists often micromanage each individual condition separately. A glaucoma specialist will manage your glaucoma, while a retinal specialist will manage your retinal condition, and you’ll have other doctors who won’t communicate with one-another. It may be that most, if not all, of your health issues are related. Young healthy men just don’t go downhill like you have in the past few years.
The important part is to get to the bottom of what’s really happening to your health. If you could arrange to have more documentation sent to me, I could talk to some specialist colleagues and get their professional opinions. I don’t have medical colleagues in Serbia, but I know people who know people. I am not a sub-specialist, just a concerned health care scientist and former clinician.
