I’m coping OK. Not perfectly, but OK, and many people in my life think I have been dealing with the blindness and then the Charcot foot better than they or most people could.
What I miss most and have accepted as unrecoverable is the ability to read. This specific handicap should not have happened. When being "prepared" for cataract surgery, I should have been told about lense options, as well as the risk factors to diabetic retinapathy. I was warned of neither. Dr. Paul Negrey of Koch Eye Associates chose a far-sighted lense for me. This killed my close vision. Glasses greater than 6.0 magnification–twice the strength of what is allowed to be sold as over-the-counter reading glasses here in Rhode Island–still don’t allow comfortable reading.
This is frustrating enough in things I can do–usually–such as figuring out what kind of soup is in an unopened can by recognizing word patterns and shapes and making an effort to remember what varieties I bought in different brands.
I can read the computer only with a series of enhancement. Reliance on a magnifying mouse as one of those enhancements has me unable to see an entire web page as a whole. Before the 2009 Cialis-triggered catastrophe, I had done professional web design. Now I am an even better judge of poor design and navigation. The teenagers and twenty-somethings who lead the field don’t factor in reduced or handicapped vision needs when promoting hover menus, small typefaces and busy layouts.
Audio books can replace novel reading, to certain extent. Rhode Island does have a great interlibrary loan system. I’ve gone through all of Kate Wilhelm’s Barbara Holloway mysteries and Sue Grafton’s alphabet. I’m pushing through Lawrence Block’s body of work with considerable enjoyment. But classics can be problematic because there’s no way to glance over the boring parts.
My unread home library consists mostly of out of print classic science fiction. Not a lot of this is available in audio.
I most miss what had been my greatest source of "childish" escapism, comic books. My interest had been waning for years, but at the time of the vitreous hemorrhage, my long-time favorite Alpha Flight saw publication of a new 8-issue series. My eyesight continued to decline and I was not able to read beyond the third issue. Now I have trouble even discerning covers and logos
Worst, on the most personal level, I have been unable to read the hard-copy versions of the anthologies that have published my work in the past few years. I can recognize the shape of my name in print, and have to content myself with that.
I’m adjusting well, but it’s not always easy.
Showing posts with label Cararact. Show all posts
Showing posts with label Cararact. Show all posts
Sunday, February 3, 2013
Monday, January 28, 2013
Getting Complicated
The post-op complication of the victrectomy was an intense rise of pressure in the eye five days after the procedure, during which the silicone oil placed inside the eye last year was swapped out with saline solution.
Pressure problems in the eye are known as glaucoma, pretty much whatever causes it. I traditionally have and maintain good eye pressure, usually between 14 and 18. Over 25 is a cause for some concern. Following the retina reattachment the pressure rose when my doctor allowed the elimination of drops that regulate pressure. That prior and temporary effect did not cause the agony that the recent spell did.
My roommate was tempted to bring me to the hospital. More cavalier, I took percocet and Nyquil and went to bed. The roommate called Doctor Krzystolik’s answering service after ten. She got back to us with willingness to meet us at her office at midnight. I deferred to 7 AM, and the doctor met us then in her office local to me, without any assisting staff.
I was candid that I had lifted and exerted more than I probably should have. She said that effort probably did not cause the problem. One friend did try assigning blame to Krzystolik, that she may have overfilled the eye. I reject the entire line of thought as desperately seeking to assign blame to a standard risk of the procedure. Unlike when I was afflicted with cataract and PRP treatment by associates at Koch Eye, Dr. Krzystolik has been clear and honest with every risk of every step. This blog shows I am not afraid to assign blame and point fingers when appropriate. I don’t find it appropriate this time.
She relieved the pressure by reducing the fluid in the eye with a needle through the center. My roommate was astounded that I didn’t even flinch. I felt it, but it didn’t come across like you’d think a needle in the eye would. I’ve been told by doctors and others that I have a high pain threshold, so I may not be the best judge.
She repeated the process in an appointment later that afternoon. My roommate didn’t watch so closely that time. Through the reduced pressure and regulating drops, the eye pressure has stayed in its normal range. The needles caused two more of those bubbles or cornea scars, but these have also diminished as time marched on, day by day then week by week.
Her willingness to meet me any and all hours and her subsequent treatment have raised my regard for Dr. Krzystolik. The eye still gives pain, but this is manageable with over-the-counter relievers, I’m limping along with my usual steps and stumbles, which my roommate often finds comical to watch.
Pressure problems in the eye are known as glaucoma, pretty much whatever causes it. I traditionally have and maintain good eye pressure, usually between 14 and 18. Over 25 is a cause for some concern. Following the retina reattachment the pressure rose when my doctor allowed the elimination of drops that regulate pressure. That prior and temporary effect did not cause the agony that the recent spell did.
My roommate was tempted to bring me to the hospital. More cavalier, I took percocet and Nyquil and went to bed. The roommate called Doctor Krzystolik’s answering service after ten. She got back to us with willingness to meet us at her office at midnight. I deferred to 7 AM, and the doctor met us then in her office local to me, without any assisting staff.
I was candid that I had lifted and exerted more than I probably should have. She said that effort probably did not cause the problem. One friend did try assigning blame to Krzystolik, that she may have overfilled the eye. I reject the entire line of thought as desperately seeking to assign blame to a standard risk of the procedure. Unlike when I was afflicted with cataract and PRP treatment by associates at Koch Eye, Dr. Krzystolik has been clear and honest with every risk of every step. This blog shows I am not afraid to assign blame and point fingers when appropriate. I don’t find it appropriate this time.
She relieved the pressure by reducing the fluid in the eye with a needle through the center. My roommate was astounded that I didn’t even flinch. I felt it, but it didn’t come across like you’d think a needle in the eye would. I’ve been told by doctors and others that I have a high pain threshold, so I may not be the best judge.
She repeated the process in an appointment later that afternoon. My roommate didn’t watch so closely that time. Through the reduced pressure and regulating drops, the eye pressure has stayed in its normal range. The needles caused two more of those bubbles or cornea scars, but these have also diminished as time marched on, day by day then week by week.
Her willingness to meet me any and all hours and her subsequent treatment have raised my regard for Dr. Krzystolik. The eye still gives pain, but this is manageable with over-the-counter relievers, I’m limping along with my usual steps and stumbles, which my roommate often finds comical to watch.
Sunday, January 27, 2013
Victrectomy Post Op
I described "scars" on the cornea that I thought were left from incisions necessary during the victrectomy. This procedure involves draining the eye of existing fluids and replacing it, usually with saline solution. My highly recommended retina specialist who performed the January 10 procedure, Doctor Krzystolik, said that the circles I can see are more likely to be drops of the silicone oil that was put in my eye during the 2012 retina reattachment. Her theory is probably the case. She’s the doctor and has more experience in these things. From my perspective, the larger circles have begun to either dissipate or have merged.
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....
Thursday, January 24, 2013
Not Blaming the Blameless
On opening my eyes without bandages and shield following the victrectomy, my vision was improved. Dr. Krzystolik had not been convinced, but I had theorized that this procedure of replacing the fluid in my eye would improve my vision because the new fluid put in my eye would be cleaner. I’m happy to have been proven correct on this, not in any sense of "knowing better" than the doctor but because my vision is better than it was before the procedure.
My vision will never be fully functional. Two great loves of my life are permanently lost to me, reading and driving. It can be hard to explain what I can and cannot see at any given time. It’s not just diabetic retinapathy that limits my vision. Obstructions, light sensitivity, cataract lense restrictions, muscle damage within the eye and other factors all contribute variable conditions. Doctor Krzystolik herself noted on her first examination that I had the most complicated eyes she had ever seen.
I like and respect Doctor Krzystolik. She has been cautious in promising expectations following any treatment. She has told me what I cannot expect for improvement. She has listened to me on every level and addressed some aspects of coping with what’s been going on.
I can’t emphasize enough my approval and satisfaction of this retina specialist with offices in both Providence, Rhode Island and Plainville Massachusetts, for two reasons. First, I have been so candid on this blog when doctors have done wrong that I feel it fair and necessary to accentuate the positives. Secondly, the victrectomy saw complications for which I do not blame Doctor Krzystolik.
There’s a schoolyard oath that I must have vowed then broken during my wayward and turbulent childhood: "Cross my heart, hope to die, stick a needle in my eye." That theory is as useful as if I wanted to blame Doctor Krzystolik , which I don’t.
I think rightfully I still blame Negrey and Michael O’Brien at Koch Eye Associates for most of my current and permanent disabilities. Doctor Krzystolik , however, has done her best to temper those conditions and correct what she could, all without pushing me towards things with a lack of necessary information.
Details of the surgical complications to follow.
My vision will never be fully functional. Two great loves of my life are permanently lost to me, reading and driving. It can be hard to explain what I can and cannot see at any given time. It’s not just diabetic retinapathy that limits my vision. Obstructions, light sensitivity, cataract lense restrictions, muscle damage within the eye and other factors all contribute variable conditions. Doctor Krzystolik herself noted on her first examination that I had the most complicated eyes she had ever seen.
I like and respect Doctor Krzystolik. She has been cautious in promising expectations following any treatment. She has told me what I cannot expect for improvement. She has listened to me on every level and addressed some aspects of coping with what’s been going on.
I can’t emphasize enough my approval and satisfaction of this retina specialist with offices in both Providence, Rhode Island and Plainville Massachusetts, for two reasons. First, I have been so candid on this blog when doctors have done wrong that I feel it fair and necessary to accentuate the positives. Secondly, the victrectomy saw complications for which I do not blame Doctor Krzystolik.
There’s a schoolyard oath that I must have vowed then broken during my wayward and turbulent childhood: "Cross my heart, hope to die, stick a needle in my eye." That theory is as useful as if I wanted to blame Doctor Krzystolik , which I don’t.
I think rightfully I still blame Negrey and Michael O’Brien at Koch Eye Associates for most of my current and permanent disabilities. Doctor Krzystolik , however, has done her best to temper those conditions and correct what she could, all without pushing me towards things with a lack of necessary information.
Details of the surgical complications to follow.
Tuesday, January 22, 2013
Blinded on the Right
Wearing the bandage and shield following the victrectomy is a difficult thing. My right eye is blinder than the left and has its own set of complications.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.
Monday, January 21, 2013
Oil Change
During the January, 2012 retina reattachment of the left eye, the dirty vitreous fluid at the center of the eye was exchanged with silicone oil. Yeah, I guess that amounts to a boob job for the eye. Lucky me, I guess, that no one told me it was too round.
As the vision diminished through 2012, my theory was that the silicone oil got dirty with detritus from the beleaguered eye. Doctor Krzystolik wasn’t too sure, but her reattachment seemed to hold in place and remain healthy looking in and of itself despite increasing vision loss.
This past January 10th, she performed a victrectomy. This seemed less risky than the reattachment as it seemed more basic. Instead of elaborate "welding" on the back of the eye, they would simply be changing the fluid on the inside to a saline solution.
I was surprised to hear the potential risks as Doctor Krzystolik read them off, but these factors did not encourage the slightest hesitancy. I’d gotten too blind to do nothing while any hope remained.
While some doctors do these victrectomy procedures under local anesthesia, I was put under. Maybe Doctor Krzystolik was afraid I’d wake and start giving directions or criticisms. I’d had local-only during the cataract surgery and prefer total unconsciousness and just waking with everything all done.
A bandage and eye shield were set in place. I would be unable to determine any change until the end of the day when eye drops had to be applied.
My range of vision is improved. I can see the knobs and pulls on kitchen cabinetry from across the kitchen. In good lighting, I can see details and if someone is nearby.
But there have been side effects. Complications arose.
I blame Doctor Krzystolik for none of them. I think that on a blog that has been clear with the failures and bad practices of other doctors, I should be clear that Doctor Krzystolik has done very well by me.
As the vision diminished through 2012, my theory was that the silicone oil got dirty with detritus from the beleaguered eye. Doctor Krzystolik wasn’t too sure, but her reattachment seemed to hold in place and remain healthy looking in and of itself despite increasing vision loss.
This past January 10th, she performed a victrectomy. This seemed less risky than the reattachment as it seemed more basic. Instead of elaborate "welding" on the back of the eye, they would simply be changing the fluid on the inside to a saline solution.
I was surprised to hear the potential risks as Doctor Krzystolik read them off, but these factors did not encourage the slightest hesitancy. I’d gotten too blind to do nothing while any hope remained.
While some doctors do these victrectomy procedures under local anesthesia, I was put under. Maybe Doctor Krzystolik was afraid I’d wake and start giving directions or criticisms. I’d had local-only during the cataract surgery and prefer total unconsciousness and just waking with everything all done.
A bandage and eye shield were set in place. I would be unable to determine any change until the end of the day when eye drops had to be applied.
My range of vision is improved. I can see the knobs and pulls on kitchen cabinetry from across the kitchen. In good lighting, I can see details and if someone is nearby.
But there have been side effects. Complications arose.
I blame Doctor Krzystolik for none of them. I think that on a blog that has been clear with the failures and bad practices of other doctors, I should be clear that Doctor Krzystolik has done very well by me.
Wednesday, August 22, 2012
Caution: Blind Bowler
For newer readers and people who haven’t seen me all summer, here’s a recap of my eyes as they see (or don’t) these days.
In 2003 I had a cornea injury that I did not leave covered up long enough. My eye started "looking around" the scratch on the surface, which caused muscle striations that pulled the eye to the side. Ever-present diabetic retina problems became opportunistic. The right eye has been dark and out of alignment ever since.
In 2009, Cialis caused a vitreous blood hemorrhage in the left eye. This filled an existing cataract and the center of the eye with blood. They did cataract surgery, which gave me good distance vision but eliminated reading vision due to the type of lense they used (with no consultation with me, the patient.) Because of the hemorrhage, I let them scare me into the "preventative" diabetic laser surgery to burn the retina on the back of the eye. The stresses of that and the cataract surgery and the hemorrhage all kind of made the diabetic thing happen, which reduced my peripheral in that eye.
In January 2012 I had retina reattachment surgery and another procedure where they replaced the blood-dirtied vitreous gel with silicone oil. This brought some clarity and keeps pressure on the back of the eye. The retina reattachment did not succeed as well as either the doctor or I had hoped.
The sight in the left eye has no perineal, so with the dark right eye, I can see only what I am looking at and cannot see that too clearly. My eye takes a long time to adjust to changes in lighting and does not process light very well. I see colors better, up to certain distances. My test by finger sight ranges from one to four feet depending on how adjusted I am to room lighting. I see most people in shadows, and can’t adjust distance vision very well. That brief experience of being eagle-eyed after the cataract surgery is long past.
I see by color, motion, contrast and feel. My brain fills in gaps. Familiarity is always an asset to getting around. I can’t successfully fake it for too long anymore. I cling to the last bits of independence I have left and learned to accept offered help without much comment or resistance.
Being stubborn and fiercely independent have been assets through all this. I need aids , such as contrasting-color tape on microwave buttons or using a 32-inch TV as a monitor and a magnifying mouse and glasses to see the computer. There’s things I can no longer do, like drive, but I try what I can before surrendering helplessly to the things I can’t., but I can do most things at least some of the time.
Life has always been pretty rough for me. I am not a fragile diabetic or a fragile person, so I try not to let it stop me. I will hold on to what I have of the old life for as long as I can,
It is unlikely things will get much better, even after the silicone oil is drained out. I will always need bowling teammates to tell me what pins are still standing in between throws, but at least I will be able to tell them that I
am still standing.I’m usually aware of it when I fall down. I’m smaht that way.
In 2003 I had a cornea injury that I did not leave covered up long enough. My eye started "looking around" the scratch on the surface, which caused muscle striations that pulled the eye to the side. Ever-present diabetic retina problems became opportunistic. The right eye has been dark and out of alignment ever since.
In 2009, Cialis caused a vitreous blood hemorrhage in the left eye. This filled an existing cataract and the center of the eye with blood. They did cataract surgery, which gave me good distance vision but eliminated reading vision due to the type of lense they used (with no consultation with me, the patient.) Because of the hemorrhage, I let them scare me into the "preventative" diabetic laser surgery to burn the retina on the back of the eye. The stresses of that and the cataract surgery and the hemorrhage all kind of made the diabetic thing happen, which reduced my peripheral in that eye.
In January 2012 I had retina reattachment surgery and another procedure where they replaced the blood-dirtied vitreous gel with silicone oil. This brought some clarity and keeps pressure on the back of the eye. The retina reattachment did not succeed as well as either the doctor or I had hoped.
The sight in the left eye has no perineal, so with the dark right eye, I can see only what I am looking at and cannot see that too clearly. My eye takes a long time to adjust to changes in lighting and does not process light very well. I see colors better, up to certain distances. My test by finger sight ranges from one to four feet depending on how adjusted I am to room lighting. I see most people in shadows, and can’t adjust distance vision very well. That brief experience of being eagle-eyed after the cataract surgery is long past.
I see by color, motion, contrast and feel. My brain fills in gaps. Familiarity is always an asset to getting around. I can’t successfully fake it for too long anymore. I cling to the last bits of independence I have left and learned to accept offered help without much comment or resistance.
Being stubborn and fiercely independent have been assets through all this. I need aids , such as contrasting-color tape on microwave buttons or using a 32-inch TV as a monitor and a magnifying mouse and glasses to see the computer. There’s things I can no longer do, like drive, but I try what I can before surrendering helplessly to the things I can’t., but I can do most things at least some of the time.
Life has always been pretty rough for me. I am not a fragile diabetic or a fragile person, so I try not to let it stop me. I will hold on to what I have of the old life for as long as I can,
It is unlikely things will get much better, even after the silicone oil is drained out. I will always need bowling teammates to tell me what pins are still standing in between throws, but at least I will be able to tell them that I
am still standing.I’m usually aware of it when I fall down. I’m smaht that way.
Friday, July 13, 2012
Cane-Do Attitude
The recent debate with two close friends where they were aggressively trying to sell me on the idea of using a blind man’s cane is far from the first time the suggestion reached my waxy ears.
The suggestion I remember best was around April 2010, back when I was recovering from the vitreous hemorrhage but had lost reading vision due to the improper cataract lense and was losing other overall vision due to the PRP procedure.
I was leaving the Social Security Administration and, until I was about two feet from her, did not see a woman in the double-wide hallway. Her clothes blended into the surrounding, leaving me without telltale signs of contrast.
The woman took up most of the wide hall. We're talking morbidly obese, four hundred pounds if she was an ounce. Her slow waddle removed the other sign I used to see things back then, motion, because her little feet just had more than they could readily handle.
She was obviously not used to not being seen and carried the attitude of the 400-pound gorilla in the room: she can sit wherever she wants. Even though I fully stopped short of any collision, she yelled at me to watch where I was going. I calmly apologized and said I was blind. I always try politeness as a first resort, I just don't follow through with diplomacy when it obviously will not work with specific people.
The woman continued yelling loudly to tell me that if I was blind I should be using a cane so other people could tell.
Do I need to put in more effort to compensate for other people? Do I have to rise above other people rudeness when they refuse to be polite or even mildly accommodating?
No, I don't.
I figured that if I was having a conversation with unsolicited suggestions being freely exchanged, that I should offer my own. I told her that she ought to lose weight to make more room for other people and continued on my way.
My mistake. She hadn’t been looking to exchange suggestions, only to tell me what she thought I needed to do. I never was the most socially adept person anyway. She was still screaming when the elevator doors closed.
The suggestion I remember best was around April 2010, back when I was recovering from the vitreous hemorrhage but had lost reading vision due to the improper cataract lense and was losing other overall vision due to the PRP procedure.
I was leaving the Social Security Administration and, until I was about two feet from her, did not see a woman in the double-wide hallway. Her clothes blended into the surrounding, leaving me without telltale signs of contrast.
The woman took up most of the wide hall. We're talking morbidly obese, four hundred pounds if she was an ounce. Her slow waddle removed the other sign I used to see things back then, motion, because her little feet just had more than they could readily handle.
She was obviously not used to not being seen and carried the attitude of the 400-pound gorilla in the room: she can sit wherever she wants. Even though I fully stopped short of any collision, she yelled at me to watch where I was going. I calmly apologized and said I was blind. I always try politeness as a first resort, I just don't follow through with diplomacy when it obviously will not work with specific people.
The woman continued yelling loudly to tell me that if I was blind I should be using a cane so other people could tell.
Do I need to put in more effort to compensate for other people? Do I have to rise above other people rudeness when they refuse to be polite or even mildly accommodating?
No, I don't.
I figured that if I was having a conversation with unsolicited suggestions being freely exchanged, that I should offer my own. I told her that she ought to lose weight to make more room for other people and continued on my way.
My mistake. She hadn’t been looking to exchange suggestions, only to tell me what she thought I needed to do. I never was the most socially adept person anyway. She was still screaming when the elevator doors closed.
Tuesday, June 19, 2012
The Eyes Don’t Have It
I did not deal with the most common question in the recent feedback post: "How is the vision these day?"
The answer is "not too good."
I have not significantly lost vision in a sweeping sense since January, but it is clear that the retina reattachment procedure was not successful. To make my feelings as clear as I can, I do not blame the eye doctor for that. She warned me in my second-ever visit to her that I had the most complicated set of eye problems she had ever seen, and when moving towards the surgery she communicated clearly on what expectation would be realistic and what side effects could be expected.
The surgery improved things. The fog in my vision had been gray before the surgery and was clearer afterwards. The vitreous gel drainage took out a lot of the floaters and lasting debris of the vitreous hemorrhage and the smaller and non-vitreous hemorrhages that occurred fairly regularly after the PRP laser procedures.
I still cannot see close up due to the lack of choice in cataract lense. My obstacle for mid range and distance vision is often light adjustment. Even looking along a smooth surface between a sunny area and a shaded one requires readjustment. I have to stop and be sure of what I am looking at, that the line of transition is indeed just shadow and not a curb or step that might make me stumble. Moving between rooms with different lighting requires adjustment. I can see well in neither dark nor brightly lit areas, but when in the same environment for a while I do adjust enough to get myself around.
With the "cleaner" fog in my eye, I can see color better close up. I can’t see the TV too well and scene changes that have different camera lighting also blind me. Usually I just listen to the TV with my eyes closed. The TV does not find this disconcerting, though people do.
My "finger test" as given by my doctor’s assistants ranged from about a foot and a half to four feet, depending on light and my adjustment to it.
My roommate gives the finger test, usually after I’ve said something I find funny. He asks, "How many fingers am I holding up?" and my answer is always "My guess is one."
I’m doing my best to cope, and would be doing better if the eye problems were the limits to what I have to deal with.
The answer is "not too good."
I have not significantly lost vision in a sweeping sense since January, but it is clear that the retina reattachment procedure was not successful. To make my feelings as clear as I can, I do not blame the eye doctor for that. She warned me in my second-ever visit to her that I had the most complicated set of eye problems she had ever seen, and when moving towards the surgery she communicated clearly on what expectation would be realistic and what side effects could be expected.
The surgery improved things. The fog in my vision had been gray before the surgery and was clearer afterwards. The vitreous gel drainage took out a lot of the floaters and lasting debris of the vitreous hemorrhage and the smaller and non-vitreous hemorrhages that occurred fairly regularly after the PRP laser procedures.
I still cannot see close up due to the lack of choice in cataract lense. My obstacle for mid range and distance vision is often light adjustment. Even looking along a smooth surface between a sunny area and a shaded one requires readjustment. I have to stop and be sure of what I am looking at, that the line of transition is indeed just shadow and not a curb or step that might make me stumble. Moving between rooms with different lighting requires adjustment. I can see well in neither dark nor brightly lit areas, but when in the same environment for a while I do adjust enough to get myself around.
With the "cleaner" fog in my eye, I can see color better close up. I can’t see the TV too well and scene changes that have different camera lighting also blind me. Usually I just listen to the TV with my eyes closed. The TV does not find this disconcerting, though people do.
My "finger test" as given by my doctor’s assistants ranged from about a foot and a half to four feet, depending on light and my adjustment to it.
My roommate gives the finger test, usually after I’ve said something I find funny. He asks, "How many fingers am I holding up?" and my answer is always "My guess is one."
I’m doing my best to cope, and would be doing better if the eye problems were the limits to what I have to deal with.
Wednesday, June 6, 2012
As Heard on TV
I say "heard" and not "seen" because I can no longer really see the TV in any detail. I can’t see it because of the very thing by the very people that was being advertised: PRP laser surgery by Koch Eye Associates.
PRP can cause the very problems it is supposed to prevent. My left eye blindness started with a vitreous hemorrhage triggered by a dose of Cialis. It became permanent blindness in what my current eye doctor called "the most complicated eyes" she had ever seen because Koch Associate Michael O’Brien had scared me into the procedure with the haunting question, "But what if it wasn’t the Cialis?" The hemorrhage happened about 16 hours after I took the Cialis. I don’t believe in coincidence, but got scared of the possibility that I could be wrong.
Peripheral loss was almost immediate. I had my first flashers after the third of six PRP sessions. .Light sensitivity increased and night vision decreased. Over time, the peripheral closed in and floaters–another form of hemorrhage became regular occurrences. Two yeas after the period of PRP sessions, retina reattachment surgery performed by the excellent Dr. Krzystolik of Southeastern New England Retina failed to improve my vision.
I had a vitreous hemorrhage, not a retina problem related to the diabetes. My retina and eye condition were stable. The PRP made it unstable. I would have fully healed from the vitreous hemorrhage and would be able to see if I had not done the PRP laser treatment.
No less than three other doctors over the preceding decades had tried scaring me into PRP with the warning "You will be blind in six months if we do not do this surgery." I think that beyond being the scare tactic that nets patient money, this is the catch all of liabilities for the quacks. If you start to lose your vision to advancing retinapathy after PRP sessions, the doctor can shrug, say sorry, and tell you "You waited too long, so we were too late to prevent it." And from experience, Koch Eye Associates will check on the status of your bill and outstanding payments before you leave.
I find the TV commercial upsetting because it was directly advertising PRP. It was not advertising the importance for diabetics to have regular eye exams. It did not give information about the warning signs of active retinapathy. The ad herds people right for an expensive and profitable procedure that can cause precisely what it is supposed to prevent.
No one at Koch warned me about the risks I had cataract surgery also with Koch in between PRP sessions and no one warned me that the cataract procedure can also trigger retinapathy. Since my last appointment two-plus years ago, no one has ever called to see how I was doing.
One scholarly site had this to say about good ol’ PRP: "Scatter laser photocoagulation has been shown to reduce the risk of severe visual loss from proliferative DR. However, scatter treatment is associated with some decline in visual function. These effects should be studied more extensively and should be considered when comparing pharmacologic treatments for proliferative DR." I don’t think there are many doctors eager to prove the negative effects any further. That could only result in decreasing the profitable business of PRP treatments.
Don’t just take my word for it. Here’s some of the sites I referenced.
http://www.medfusion.net/templates/groups/5500/9575/ericmann-prpfordrp.pdf
http://www.ncbi.nlm.nih.gov/pubmed/17891003
http://www.omicsonline.org/2155-9570/2155-9570-2-149.pdf
This diabetes forum site has mixed reviews and opinions.
http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=19&t=24243
I have no doubt that PRP can be a crucial procedure for some patients, but emphasize that it can be crippling to others. The key strikes me as how stable the patient’s eye is. The best way to determine this is for exams with photographs by the same doctor three to six months apart. If the doctor cannot show you active areas of bleeding in comparing the photographs. You are better off resisting the doctor’s urge to profiteer on your pain and suffering.
The Koch commercial was not pitching exams to diabetics, but the procedure itself. There’s reason for wariness in that.
PRP can cause the very problems it is supposed to prevent. My left eye blindness started with a vitreous hemorrhage triggered by a dose of Cialis. It became permanent blindness in what my current eye doctor called "the most complicated eyes" she had ever seen because Koch Associate Michael O’Brien had scared me into the procedure with the haunting question, "But what if it wasn’t the Cialis?" The hemorrhage happened about 16 hours after I took the Cialis. I don’t believe in coincidence, but got scared of the possibility that I could be wrong.
Peripheral loss was almost immediate. I had my first flashers after the third of six PRP sessions. .Light sensitivity increased and night vision decreased. Over time, the peripheral closed in and floaters–another form of hemorrhage became regular occurrences. Two yeas after the period of PRP sessions, retina reattachment surgery performed by the excellent Dr. Krzystolik of Southeastern New England Retina failed to improve my vision.
I had a vitreous hemorrhage, not a retina problem related to the diabetes. My retina and eye condition were stable. The PRP made it unstable. I would have fully healed from the vitreous hemorrhage and would be able to see if I had not done the PRP laser treatment.
No less than three other doctors over the preceding decades had tried scaring me into PRP with the warning "You will be blind in six months if we do not do this surgery." I think that beyond being the scare tactic that nets patient money, this is the catch all of liabilities for the quacks. If you start to lose your vision to advancing retinapathy after PRP sessions, the doctor can shrug, say sorry, and tell you "You waited too long, so we were too late to prevent it." And from experience, Koch Eye Associates will check on the status of your bill and outstanding payments before you leave.
I find the TV commercial upsetting because it was directly advertising PRP. It was not advertising the importance for diabetics to have regular eye exams. It did not give information about the warning signs of active retinapathy. The ad herds people right for an expensive and profitable procedure that can cause precisely what it is supposed to prevent.
No one at Koch warned me about the risks I had cataract surgery also with Koch in between PRP sessions and no one warned me that the cataract procedure can also trigger retinapathy. Since my last appointment two-plus years ago, no one has ever called to see how I was doing.
One scholarly site had this to say about good ol’ PRP: "Scatter laser photocoagulation has been shown to reduce the risk of severe visual loss from proliferative DR. However, scatter treatment is associated with some decline in visual function. These effects should be studied more extensively and should be considered when comparing pharmacologic treatments for proliferative DR." I don’t think there are many doctors eager to prove the negative effects any further. That could only result in decreasing the profitable business of PRP treatments.
Don’t just take my word for it. Here’s some of the sites I referenced.
http://www.medfusion.net/templates/groups/5500/9575/ericmann-prpfordrp.pdf
http://www.ncbi.nlm.nih.gov/pubmed/17891003
http://www.omicsonline.org/2155-9570/2155-9570-2-149.pdf
This diabetes forum site has mixed reviews and opinions.
http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=19&t=24243
I have no doubt that PRP can be a crucial procedure for some patients, but emphasize that it can be crippling to others. The key strikes me as how stable the patient’s eye is. The best way to determine this is for exams with photographs by the same doctor three to six months apart. If the doctor cannot show you active areas of bleeding in comparing the photographs. You are better off resisting the doctor’s urge to profiteer on your pain and suffering.
The Koch commercial was not pitching exams to diabetics, but the procedure itself. There’s reason for wariness in that.
Friday, May 4, 2012
The Round-up
A major intent of this blog from, the beginning was to share information in the hopes of helping other people avoid some of my mishaps.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.
Friday, March 30, 2012
Rolling with the Changes
Part of the difficulty in dealing with the whole going blind thing is that the status quo keeps changing on me. Each of four setbacks changed things, as did the cataract surgery, the PRP sessions, bouts of improvement, and the double procedure of vitreous exchange and retina reattachment. There should be another change with a procedure slated for sometime down the line, when they drain the silicon oil from my eye and replace it with something that should allow for natural vitreous reformation.
The prescription of the prednisone and the development of the Charcot foot both also seriously undermine what I can do, and both those situations will also change.
The positive aspect is that the changes that can be expected should all be improvements. There’s a lot of hope I cling to there.
I do seem to get a lot of sincere compliments about how well I cope with all this. I know that the coping had been good, but I am, too aware of my private times of despair and hopelessness to grade my efforts as highly as others do.
I’ve clawed my way through the two and a half years since the hemorrhage with tools that all too often caused conflict in my life: obstinacy; a warped and off color sense of humor; cocky certainty; foolhardy courage; an unwillingness to readily surrender to my gut even when "everyone" would tell ne I was wrong.
My didactic life has been full of adversity, always one more thing to cope with and adapt to, literally since birth. None of it killed me, so all of it made me stronger.
I’ve learned to cover some of that strength these days. My unyielding demeanor had always been something people–particularly the parade of control freaks through my life–didn’t like about me, That solid strength in a slight frame and relative youth and among people who destroy anyone who fails to acquiesce to their presumed mastery carried me through.
It continues to carry me, and it often continues to surprise. These days I am trying to develop a kinder, gentler persona that meshes better with what people "expect" from a blind guy.
But I’m still not ready for a red and white cane because I will beat people with it.
The prescription of the prednisone and the development of the Charcot foot both also seriously undermine what I can do, and both those situations will also change.
The positive aspect is that the changes that can be expected should all be improvements. There’s a lot of hope I cling to there.
I do seem to get a lot of sincere compliments about how well I cope with all this. I know that the coping had been good, but I am, too aware of my private times of despair and hopelessness to grade my efforts as highly as others do.
I’ve clawed my way through the two and a half years since the hemorrhage with tools that all too often caused conflict in my life: obstinacy; a warped and off color sense of humor; cocky certainty; foolhardy courage; an unwillingness to readily surrender to my gut even when "everyone" would tell ne I was wrong.
My didactic life has been full of adversity, always one more thing to cope with and adapt to, literally since birth. None of it killed me, so all of it made me stronger.
I’ve learned to cover some of that strength these days. My unyielding demeanor had always been something people–particularly the parade of control freaks through my life–didn’t like about me, That solid strength in a slight frame and relative youth and among people who destroy anyone who fails to acquiesce to their presumed mastery carried me through.
It continues to carry me, and it often continues to surprise. These days I am trying to develop a kinder, gentler persona that meshes better with what people "expect" from a blind guy.
But I’m still not ready for a red and white cane because I will beat people with it.
Tuesday, February 7, 2012
Running Risks
In hindsight (about all I have left) I stand by my decision to hide the impending surgery from almost everyone. The risks in retina reattachment surgery are well beyond the fate of the doctor suddenly needing to sneeze while a knife or laser is in my eye.
Four risks dominated the list of potential problems:
1. Death on the table
2. Physical loss of the eye
3. Going from "visually impaired" to blind in the dark sense most people think of when they think "blind."
4. Infection
The risk of death increased by suddenly elevated blood pressure. My theory is that the Charcot foot increased the BP, but I haven’t found documented support of that. Where I had resisted Lisinopril despite its positive kidney effects because my BP had never been out of the normal range, I started it the week before the surgery. I quickly learned that the started dose wasn’t enough.
The doctor was hesitant to do the surgery, but went ahead with my encouragement. The increased BP also increases bleeding risks.
I woke up from the surgery, so the ultimate risk was past.
The possibility that I would wake up with fewer than two eyes physically in my head also did not happen.
I sweated most over the chance of being fully blinded by the surgery. When I got home and my roommate lifted the patch and shield and bandage to give eye drops, I held my breath. The eye could see light. I had not been rendered dark blind.
The fourth of the big risks is danger of infection. I am on a course of eye drops to prevent that. I am not sure how fully beyond that risk I now stand as the doc extended the prescription of the drops; that had not been necessary following the cataract surgery. I can discern no signs of problems, but I am following the recommendation diligently.
The actual success of the surgery remains to be seen, or not seen as the case my be.
Four risks dominated the list of potential problems:
1. Death on the table
2. Physical loss of the eye
3. Going from "visually impaired" to blind in the dark sense most people think of when they think "blind."
4. Infection
The risk of death increased by suddenly elevated blood pressure. My theory is that the Charcot foot increased the BP, but I haven’t found documented support of that. Where I had resisted Lisinopril despite its positive kidney effects because my BP had never been out of the normal range, I started it the week before the surgery. I quickly learned that the started dose wasn’t enough.
The doctor was hesitant to do the surgery, but went ahead with my encouragement. The increased BP also increases bleeding risks.
I woke up from the surgery, so the ultimate risk was past.
The possibility that I would wake up with fewer than two eyes physically in my head also did not happen.
I sweated most over the chance of being fully blinded by the surgery. When I got home and my roommate lifted the patch and shield and bandage to give eye drops, I held my breath. The eye could see light. I had not been rendered dark blind.
The fourth of the big risks is danger of infection. I am on a course of eye drops to prevent that. I am not sure how fully beyond that risk I now stand as the doc extended the prescription of the drops; that had not been necessary following the cataract surgery. I can discern no signs of problems, but I am following the recommendation diligently.
The actual success of the surgery remains to be seen, or not seen as the case my be.
Wednesday, January 18, 2012
Brains, Heart, Balls, and...
I enter a room and I can’t quite tell who is in it.
When I arrive at bowling, I pre-check what my lane assignment is; I can’t trust my vision otherwise to know that I am plunking my butt down next to my teammates instead of people with the same general silhouette.
If my roommate leaves the room without a sound, I end up talking to myself during the next commercial because I don’t know he’s no longer there.
I can no longer read. Even when I can align proper magnification and illumination, there’s a blank spot in my central vision that disenables me from putting all the letters together into a coherent word. I write this blog on type size even larger than the blog’s visually-handicapped- friendly presentation. I still need the magnifying mouse and I get stymied by things like an extra "r" in a "worrd" or the typo of an "m" for an "n" because I can’t make out which is there.
Everything takes longer. I’ve been paring my life down just to the things that are worth it.
I don’t think things should ave gotten this bad. I don’t think the retinapathy would have happened if not for the PRP treatment; there are no alternate worlds to explore the un-taken roads in time to know for sure. The Arrigg-ant doctors at Joslin strung me along for more than a year when they had no intention of doing surgery that could make me dark-blind or bring permanent pain to the eye at equal risks to the prevention of further loss or improvement. I’ve been known to take spectacular risks at times, always with a thought out risk-benefit analysis. I’ve had burning failures and amazing successes. I have a combination of brains, heart, balls and an ass that can take a kicking and still not give a shit. After learning the hard way via risks and side effects of PRP procedures and cataract surgery that the doctors neglected to mention, I learned to look up the risks for myself. I’ve been ready, willing and eager for the risky treatments since the first setback.
I’ve lived by Dennis DeYoung’s words since I was 17: "I’ll take the heat for all the chances I’m gonna take, mistakes that I make. Wait and see, you’re gonna hear from me."
I’m willing to take the chances that most doctors are not. Is that understandable? It’s their medical malpractice premiums versus my quality of life, my life itself.
This is harder than it has to be.
Something needs to be done.
Soon.
When I arrive at bowling, I pre-check what my lane assignment is; I can’t trust my vision otherwise to know that I am plunking my butt down next to my teammates instead of people with the same general silhouette.
If my roommate leaves the room without a sound, I end up talking to myself during the next commercial because I don’t know he’s no longer there.
I can no longer read. Even when I can align proper magnification and illumination, there’s a blank spot in my central vision that disenables me from putting all the letters together into a coherent word. I write this blog on type size even larger than the blog’s visually-handicapped- friendly presentation. I still need the magnifying mouse and I get stymied by things like an extra "r" in a "worrd" or the typo of an "m" for an "n" because I can’t make out which is there.
Everything takes longer. I’ve been paring my life down just to the things that are worth it.
I don’t think things should ave gotten this bad. I don’t think the retinapathy would have happened if not for the PRP treatment; there are no alternate worlds to explore the un-taken roads in time to know for sure. The Arrigg-ant doctors at Joslin strung me along for more than a year when they had no intention of doing surgery that could make me dark-blind or bring permanent pain to the eye at equal risks to the prevention of further loss or improvement. I’ve been known to take spectacular risks at times, always with a thought out risk-benefit analysis. I’ve had burning failures and amazing successes. I have a combination of brains, heart, balls and an ass that can take a kicking and still not give a shit. After learning the hard way via risks and side effects of PRP procedures and cataract surgery that the doctors neglected to mention, I learned to look up the risks for myself. I’ve been ready, willing and eager for the risky treatments since the first setback.
I’ve lived by Dennis DeYoung’s words since I was 17: "I’ll take the heat for all the chances I’m gonna take, mistakes that I make. Wait and see, you’re gonna hear from me."
I’m willing to take the chances that most doctors are not. Is that understandable? It’s their medical malpractice premiums versus my quality of life, my life itself.
This is harder than it has to be.
Something needs to be done.
Soon.
Tuesday, January 3, 2012
Fighting the Growing Night
Essentially, I am blind because I am diabetic, going on 40 years now. It just catches up to you, I could say. I have not lived the life of a bad diabetic all these years, something guaranteed to hasten multiple problems and complications. For me, diabetes had been less of a direct cause and more of an opportunistic leech ever ready to suck away and complicate anything it could.
The right eye’s been blind since 2003. I coped and adjusted to that fairly well. I did not leave a minor cornea abrasion covered long enough. They eye began looking around the temporary obstruction. When that happened, my eye muscles pulled out of place, it permanently peeled the retina off the back of the eye, opportunistic of old damage. I retain a pinhole of vision in the right eye, but that is obscured by a dense cataract and that the muscle damage does not allow my brain to properly direct the eye.
The left eye is even more complicated. Like with the right eye, there was old but stable diabetic non-proliferative retinapathy.
The stable situation changed in 2009 when I took a dose of Cialis. The boner pull caused a massive blood hemorrhage in my good eye. Levitra or Viagra could have done the same thing.
In seeking treatment, cataract surgery would be necessary as the cataract was now filled with blood. Doctors scared into doing PRP laser treatment to "prevent advancement of retinapathy."
Cataract surgery can trigger proliferative retinapathy. I was not told that.
The PRP treatment can also increase risk of advanced retinapathy and is almost guaranteed to reduce peripheral vision. I wasn’t told that either. I had forestalled PRP treatment for two decades. The doctors told me that retinapathy, not boner pulls, caused the blood gushing hemorrhage. I knew it was Cialis, but I am not arrogant enough to not doubt that the doctors might be right.
Flashes of light, aptly called "flashers," started after the third PRP session. Flashers are a certain sign of full blown retinapathy, where the retina begins to detach.
I was not given a choice in cataract lenses because my doctor knew what was best for me. The new lense killed my reading vision.
The PRP ended after six sessions. Peripteral began receding almost immediately.
I had also not been told that what I had suffered was a vitreous hemorrhage. I had expected the cataract surgery to clear the obstruction of ruddy blood fog. Instead I learned that an entire other pool of blood remained in the center of the eye.
My vision darkened to the edges of the cataract lense as the eye absorbed the vitreous contamination. I coped with this remarkably well, until scar tissue and further retinapathy issues further eroded my remaining vision. The vitreous remained filled with clouds and floaters that accumulated into a still-thickening veil of darkness. The obstruction within my eye inhibits my pupil from working correctly and obscures most color vision.
The retinapathy has advanced beyond the cataract. I have at least one dead spot in my central vision. Now reading is impossible not just for worsening focus issues, but because I really can’t see a set of letters as an entire cohesive word.
I’m still coping, but maybe not as well. The fight to retain any self sufficiency has become a nonstop battle that I can’t seem to win.
I’m conjuring my adolescence, when I didn’t let impossible odds stop me from fighting on.
The right eye’s been blind since 2003. I coped and adjusted to that fairly well. I did not leave a minor cornea abrasion covered long enough. They eye began looking around the temporary obstruction. When that happened, my eye muscles pulled out of place, it permanently peeled the retina off the back of the eye, opportunistic of old damage. I retain a pinhole of vision in the right eye, but that is obscured by a dense cataract and that the muscle damage does not allow my brain to properly direct the eye.
The left eye is even more complicated. Like with the right eye, there was old but stable diabetic non-proliferative retinapathy.
The stable situation changed in 2009 when I took a dose of Cialis. The boner pull caused a massive blood hemorrhage in my good eye. Levitra or Viagra could have done the same thing.
In seeking treatment, cataract surgery would be necessary as the cataract was now filled with blood. Doctors scared into doing PRP laser treatment to "prevent advancement of retinapathy."
Cataract surgery can trigger proliferative retinapathy. I was not told that.
The PRP treatment can also increase risk of advanced retinapathy and is almost guaranteed to reduce peripheral vision. I wasn’t told that either. I had forestalled PRP treatment for two decades. The doctors told me that retinapathy, not boner pulls, caused the blood gushing hemorrhage. I knew it was Cialis, but I am not arrogant enough to not doubt that the doctors might be right.
Flashes of light, aptly called "flashers," started after the third PRP session. Flashers are a certain sign of full blown retinapathy, where the retina begins to detach.
I was not given a choice in cataract lenses because my doctor knew what was best for me. The new lense killed my reading vision.
The PRP ended after six sessions. Peripteral began receding almost immediately.
I had also not been told that what I had suffered was a vitreous hemorrhage. I had expected the cataract surgery to clear the obstruction of ruddy blood fog. Instead I learned that an entire other pool of blood remained in the center of the eye.
My vision darkened to the edges of the cataract lense as the eye absorbed the vitreous contamination. I coped with this remarkably well, until scar tissue and further retinapathy issues further eroded my remaining vision. The vitreous remained filled with clouds and floaters that accumulated into a still-thickening veil of darkness. The obstruction within my eye inhibits my pupil from working correctly and obscures most color vision.
The retinapathy has advanced beyond the cataract. I have at least one dead spot in my central vision. Now reading is impossible not just for worsening focus issues, but because I really can’t see a set of letters as an entire cohesive word.
I’m still coping, but maybe not as well. The fight to retain any self sufficiency has become a nonstop battle that I can’t seem to win.
I’m conjuring my adolescence, when I didn’t let impossible odds stop me from fighting on.
Thursday, December 29, 2011
Give Me the Keys, and I'll Drive You Crazy
How does a blind guy drive?
The glib answer: very carefully.
The current true answer is that I don’t. Or I don’t drive much or often, anyway The most recent excursion was really when I shouldn’t’ve. This phase of "elderly adolescence" that I find myself in overcame me a couple weeks ago, a few days before the last setback.
The entire field of vision is blurred and grayed out by the setbacks releases. As each floater absorbed into the eye, it left a greater haze behind and has proven more of a barrier to the pupil. The entire effect and disability is hard to describe because there’s multiple problems in the eye.
The pupil problem leaves me unable to quickly adjust between changes in brightness. Highbeams flashing in my eyes at night needs more than a momentary readjustment; it can blind me for minutes. N the daytime, the light seems to stay in the eye.
It is as if I am constantly looking through fog. The further away something is, the more heavily obscured it seems. When the sun is shining, it is like early morning fog, aglow with glare.
I did not have those problems when I resumed driving in late Spring 2010. The main problem then was the field of vision. I was used to being blind in one eye, but the PRP procedure had diminished the left eye’s field of vision to a sphere at the edges of the cataract lense. I adjusted to that largely by avoiding left had turns or street crossing at uncontrolled intersections. This focused me on just watching for traffic from the left rather than having to jerk my head back and forth in looking for multiple directions of approaching traffic and timing each side. Yes, I dud circle some block to make three right turns for the end accomplishment of the left turn I needed.
Highway driving was actually quite easy. I’d get in a non-merge lane and stay there until before my exit. I could see any distance I was looking at. So highway travel was actually quite comfortable. I had made a run to Nashua, New Hampshire on Columbus Day 2010. That had been a great day, the first to harken back to the pre-hemorrhage filled with 65 mph freedom accompanied by some favorite CDs in the deck.
Up through the release of the first retina hemorrhage (as opposed to the full blood vitreous hemorrhage triggered by a dose of Cialis) the only real "danger" I posed as a blind driver was a reduced ability to prevent accidents that would be caused by other people’s carelessness.
This changed after the first setback, just weeks after that soul-soothing trip to New Hampshire.
The glib answer: very carefully.
The current true answer is that I don’t. Or I don’t drive much or often, anyway The most recent excursion was really when I shouldn’t’ve. This phase of "elderly adolescence" that I find myself in overcame me a couple weeks ago, a few days before the last setback.
The entire field of vision is blurred and grayed out by the setbacks releases. As each floater absorbed into the eye, it left a greater haze behind and has proven more of a barrier to the pupil. The entire effect and disability is hard to describe because there’s multiple problems in the eye.
The pupil problem leaves me unable to quickly adjust between changes in brightness. Highbeams flashing in my eyes at night needs more than a momentary readjustment; it can blind me for minutes. N the daytime, the light seems to stay in the eye.
It is as if I am constantly looking through fog. The further away something is, the more heavily obscured it seems. When the sun is shining, it is like early morning fog, aglow with glare.
I did not have those problems when I resumed driving in late Spring 2010. The main problem then was the field of vision. I was used to being blind in one eye, but the PRP procedure had diminished the left eye’s field of vision to a sphere at the edges of the cataract lense. I adjusted to that largely by avoiding left had turns or street crossing at uncontrolled intersections. This focused me on just watching for traffic from the left rather than having to jerk my head back and forth in looking for multiple directions of approaching traffic and timing each side. Yes, I dud circle some block to make three right turns for the end accomplishment of the left turn I needed.
Highway driving was actually quite easy. I’d get in a non-merge lane and stay there until before my exit. I could see any distance I was looking at. So highway travel was actually quite comfortable. I had made a run to Nashua, New Hampshire on Columbus Day 2010. That had been a great day, the first to harken back to the pre-hemorrhage filled with 65 mph freedom accompanied by some favorite CDs in the deck.
Up through the release of the first retina hemorrhage (as opposed to the full blood vitreous hemorrhage triggered by a dose of Cialis) the only real "danger" I posed as a blind driver was a reduced ability to prevent accidents that would be caused by other people’s carelessness.
This changed after the first setback, just weeks after that soul-soothing trip to New Hampshire.
Monday, December 26, 2011
Losing the Great American Liberty
In October 2009, the vitreous hemorrhage that resulted from a dose of Cialis filled the eye with blood. I saw everything through a red glow. I could not drive at night but managed for a while in the daytime, to places I knew. The visual effect those first few weeks was nothing more than looking through rose colored lenses. The discoloration darkened everything, but in the light I could function OK. I pressed on with life.
That changed with the healing process. He blood began to separate from itself and mix into the eye. It contaminated the vitreous fluid and the fluid in the dense existing cataract. This changed the visual effect from simple discoloration to a dense reddish cloud. The cloud obscured everything. Within a couple weeks I was uselessly blind at all things. At that point I stopped driving on my own. No one needed to take my keys away. I am typically responsible for myself and I recognized the dangers I posed to myself and society without needing some catastrophic event to smash the point into my skull.
I was off the road before the end of October 2009. Except for one time, I did not drive until late April 2010. I loved driving almost as much as I loved reading, which I also could not do. I was feeling great losses at this time.
The sole attempt at driving was during the only accumulating snowfall of that season. I felt lucky that it had been a light snow season where the storms all seemed to mystically miss Rhode Island. If I had been well I certainly would have driven to Virginia with the signs on the plow just to make money that year. Transported by teammates and reliant on them to know what pins remained target of the second ball, I still bowled twice per week. Otherwise I stagnated at home.
I almost wish I had some amusing story to relate with the attempt at driving that winter. I got behind the wheel in an attempt to plow my own parking area.
I quickly realized it was not something I could do. The ruddy haze was too blinding.
I carried the expectation that the cataract surgery would restore me. The treatment at the time was "preventative" PRP surgery then cataract replacement, and the doctors fostered those expectations.
Cataract replacement did remove a layer of the ruddy haze. I opened my eyes in bed the night of the surgery and seeing farther and better than I had since childhood.
Then I got up and moved. That was the first I learned of the vitreous fluid problem. An immense pool of blood still resided in the center of the eye. The blood and vitreous fluid acted as oil and vinegar. So long as I was perfectly still, the elements separated and I could see clearly. I could see the bubble of blood floating at the top of the eye. Any movement mixed the bubble with the natural eye fluids.
I’d be going nowhere fast, not until the blood dissipated, and no one could tell me when or if that would be.
That changed with the healing process. He blood began to separate from itself and mix into the eye. It contaminated the vitreous fluid and the fluid in the dense existing cataract. This changed the visual effect from simple discoloration to a dense reddish cloud. The cloud obscured everything. Within a couple weeks I was uselessly blind at all things. At that point I stopped driving on my own. No one needed to take my keys away. I am typically responsible for myself and I recognized the dangers I posed to myself and society without needing some catastrophic event to smash the point into my skull.
I was off the road before the end of October 2009. Except for one time, I did not drive until late April 2010. I loved driving almost as much as I loved reading, which I also could not do. I was feeling great losses at this time.
The sole attempt at driving was during the only accumulating snowfall of that season. I felt lucky that it had been a light snow season where the storms all seemed to mystically miss Rhode Island. If I had been well I certainly would have driven to Virginia with the signs on the plow just to make money that year. Transported by teammates and reliant on them to know what pins remained target of the second ball, I still bowled twice per week. Otherwise I stagnated at home.
I almost wish I had some amusing story to relate with the attempt at driving that winter. I got behind the wheel in an attempt to plow my own parking area.
I quickly realized it was not something I could do. The ruddy haze was too blinding.
I carried the expectation that the cataract surgery would restore me. The treatment at the time was "preventative" PRP surgery then cataract replacement, and the doctors fostered those expectations.
Cataract replacement did remove a layer of the ruddy haze. I opened my eyes in bed the night of the surgery and seeing farther and better than I had since childhood.
Then I got up and moved. That was the first I learned of the vitreous fluid problem. An immense pool of blood still resided in the center of the eye. The blood and vitreous fluid acted as oil and vinegar. So long as I was perfectly still, the elements separated and I could see clearly. I could see the bubble of blood floating at the top of the eye. Any movement mixed the bubble with the natural eye fluids.
I’d be going nowhere fast, not until the blood dissipated, and no one could tell me when or if that would be.
Saturday, December 17, 2011
Setbacks and Disappointments
I call the incidents of large floaters breaking loose in my eye "setbacks." That is a gross understatement. Each could have stopped me dead in the tracks of whatever I was trying to achieve at the moment, and for that day or week or month. The first setback in November 2010 did just that. I let it. I reverted to the state of blood obstructed vision from the original vitreous hemorrhage. I sat in the recliner day by day, listening to the TV.
The February 2011 release caused more stress. The winter had been rough in regards to maintaining my responsibilities. Three apartments had emptied. I was not up to the work of rehab. A quick job such as upgrading window blinds became next to impossible. I couldn’t see up close even when things were clearer, thanks to Doctor Negrey’s decision to install a cataract lense that killed my close vision.
In 2003 I had single handedly turned over six apartments in one month. This time it took nine months to turn over three. Getting help proved difficult. Friends with good intentions made promises out of pity. Some made it worse when they realized they didn’t really want to help. They became too embarrassed about their second thoughts to even call to cancel. In some cases, waiting for the promised dat of help then waiting around all day for someone with no intention of actually showing up wasted weeks.
I ca be a pretty difficult guy in a lot of ways. I’m strong and cocksure. I fought since adolescence for self control and self sufficiency. I’m not arrogant–I do not believe myself better than anyone else, just equally good as anyone else, better at some things, worse at others. Cocky, yes. Arrogant, no. But a lot of people can see that distinction about as well as I can see the directions on the back of an aspirin bottle.
I was never big on relying on other people and the multiple disappointments with multiple people I am genuinely fond of did lead to emotional shut down. I’m prone to those. In some ways the lifelong fight for self sufficiency was too successful. Failed results when reaching out to or relying on others kicks me back to cold and fierce independence.
I’m struggling to accept that those lifelong default modes just won’t work well anymore. Each helping hand I push away usually leads to another stumble over a curb or down the stairs.
Parents, teachers and mentors found my strength of will banes of their existence. People always found my infamous "don’t care, don’t need anyone" attitude abrasive.
That cocksure strength prompts me to call these massive regressions and relapses "setbacks." I recover from each less completely. To apply a more serious label for them will only speed my loss of self control, a loss that seems inevitable at this point.
But I won’t let it happen any faster than nature rips it away..
The February 2011 release caused more stress. The winter had been rough in regards to maintaining my responsibilities. Three apartments had emptied. I was not up to the work of rehab. A quick job such as upgrading window blinds became next to impossible. I couldn’t see up close even when things were clearer, thanks to Doctor Negrey’s decision to install a cataract lense that killed my close vision.
In 2003 I had single handedly turned over six apartments in one month. This time it took nine months to turn over three. Getting help proved difficult. Friends with good intentions made promises out of pity. Some made it worse when they realized they didn’t really want to help. They became too embarrassed about their second thoughts to even call to cancel. In some cases, waiting for the promised dat of help then waiting around all day for someone with no intention of actually showing up wasted weeks.
I ca be a pretty difficult guy in a lot of ways. I’m strong and cocksure. I fought since adolescence for self control and self sufficiency. I’m not arrogant–I do not believe myself better than anyone else, just equally good as anyone else, better at some things, worse at others. Cocky, yes. Arrogant, no. But a lot of people can see that distinction about as well as I can see the directions on the back of an aspirin bottle.
I was never big on relying on other people and the multiple disappointments with multiple people I am genuinely fond of did lead to emotional shut down. I’m prone to those. In some ways the lifelong fight for self sufficiency was too successful. Failed results when reaching out to or relying on others kicks me back to cold and fierce independence.
I’m struggling to accept that those lifelong default modes just won’t work well anymore. Each helping hand I push away usually leads to another stumble over a curb or down the stairs.
Parents, teachers and mentors found my strength of will banes of their existence. People always found my infamous "don’t care, don’t need anyone" attitude abrasive.
That cocksure strength prompts me to call these massive regressions and relapses "setbacks." I recover from each less completely. To apply a more serious label for them will only speed my loss of self control, a loss that seems inevitable at this point.
But I won’t let it happen any faster than nature rips it away..
Sunday, December 11, 2011
Arrigg-ance
I remained a patient at Joslin Center’s Eye Clinic for multiple visits from early Summer 2010 to late summer 2011.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.
Saturday, December 3, 2011
The Long and Winding Road
In October 2009 I took a Cialis to counteract the ill effects of taking antidepressants that I needed after having gotten my diabetes "under better control." I woke the following morning to see a vitreous hemorrhage gushing blood in my only good eye.
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
Blood filled the center of the eye and an existing cataract. I got scared into PRP surgery, with sessions before and after the cataract procedure. As neither doctor involved bothered to tell me that both PRP laser and cataract surgery increase risks of diabetic retinapathy, I was foolishly surprised when retinapathy developed while I was still undergoing the PRP
I was also not told of lense options for the cataract. I did not understand why I had NO reading vision while old men I knew had no problem reading with their new cataract lenses.
By summer of 2010 I was finding my new groove in life. I could not do some things at all, could do others with increased effort and caution, and could almost carry on with other things like my old self.
The more familiar I had been with what I was doing before going blind, the better I could handle it blind .
This blog is one guy’s personal and subjective experience, but it contains important take aways for general readers, particularly diabetics and eye patients. I have been accused of being a caustic cynic long before I ever started blogging.
By law of averages alone, I can’t be as dumb as I look. One important objective of this bit of cyberspace is to throw out ideas and experiences that should be given some thought by patients.
These warnings include:
Ask every question of your doctors, because they may not tell you.
Do your own thorough research on any procedure before undergoing it. Be sure to include the term "risk factor" or "side effect" in your search terms.
Diabetic light sensitivity may be caused by the routine dilation treatments during exams.
You have a right to your medical records and you should be familiar with them.
When you find a good doctor who is knowledgeable about his field and honest to you when he just doesn’t know, hold on to him. No one knows it all and the arrogant doctor who pretends to know everything can do you more harm than someone who recognizes and admits his limitations.
Treat people who developed physical handicaps late in life as you did before, and like they were whole people. Blindness and amputations are not catchy. Humor is what we gimps usually need most.
Appreciate those around you!
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