I am permanently blind, not from the Cialis-induced vitreous hemorrhage, but because of the PRP laser treatment inflicted by Dr. Michael O’Brien of Koch Eye Associates. I think his employer is as much to blame as Koch has advertised for PRP patients rather than eye tests to see if PRP treatment is prudent for specific patients.
But I still see it as my own fault for letting myself be scared into it. "O’Brien had said, "You’re probably right about the Cialis, but what if you’re not?"
Yes, three years later I remain angry and bitter about this, and other massive "wrongness" from the Koch offices and associates.
I suppress the anger and fight the negativity on a daily basis. Some days don’t succeed as well as others. This is a pattern that has enshrouded me for my entire life. I won’t get into why that’s so. Who wants to hear self pitying whining?
I’ve lost maybe eighty percent of my life to this, and maybe more. Nothing is the same and everything is different, every function, every relationship.
My blindness is legal blindness. The left eye is not dark, just greatly impaired by a few different factors. As long as I have that bit of vision left, as long as I can still find the fridge and the toilet and the keyboard, I can make the most out of what I have left.
I have to content myself with that.
I will content myself with that.
Showing posts with label PRP Laser. Show all posts
Showing posts with label PRP Laser. Show all posts
Wednesday, February 6, 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.
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.
Monday, January 7, 2013
The Long Decline
On January 19, 2012, I had outpatient surgery of retina reattachment. My eyesight in the preceding months had been declining in spurts, mostly with the release of floaters that enter the vitreous liquid in the center of the eye. The floaters cast shadows and darkened the vision with shadows and obstructions. By this time, most of the red cloud of the October 2009 vitreous hemorrhage had healed and cleared. The vision was declining with symptoms of diabetic retinapathy by summer, 2010. Researching the PRP surgery I had undergone after urgent pushing by Koch Eye associates revealed that the side effects of the PRP laser are identical to the symptoms of diabetic retinapathy. Too late for me. What’s done was done, and after the first round of symptom development including flashers that began after the third PRP session and the recession of peripheral, the darkness advanced. Fall 2011 saw it getting worse regularly.
The retina reattachment halted that. Part of that surgery included replacing the natural eye fluid with a silicone oil. The silicone helps to maintain pressure in the eye to keep the back of the eye "glued together." This can increase eye pressure and cause glaucoma, one of the few problems I didn’t have in either eye. Two kinds of eye drops kept that problem at bay. At one point the pressure was too low; stopping the drops on the doc’s recommendation saw a surge in pressure. Resumption of the drops brought that back under control.
From all physical signs from doctors looking at my eye, the reattachment was successful and "stayed together." Looking out from the eye, however, indicates different results. The vision was at a slow decline in the year since the surgery.
The specific problems have not been traditional signs of diabetic retinapathy. Before the retina reattachment, the cloud overwhelming my vision was dark, and had definite, noticeable onsets as "gunk" in the eye released This year’s decline has been different.
I suffered no sudden "setbacks," as I called the release of floaters. Two problems developed and worsened over time.
The first is the light sensitivity and my eye’s apparent inability to process light. Strong light sources blind me with their brilliance and glare. My eye experienced increasing difficulty adjusting to variable light, even that of inconstant and inconsistent outdoor shadows of leafy trees. The reverse also proved true. Not enough light just was not enough light. Night vision is blindness. Vision in overly bright light is blindness.
A new cloud also developed, much like bottled fog that I carry with me everywhere. This was not like the red cloud of the hemorrhage or the black cloud of developing retinapathy. The fog is very clean, and has been since post op. But as "clean" as it has stayed, it has thickened over time. After the reattachment, I could see more than four feet away with finger motion. Now I can barely see overall motion at one foot away.
Without cues of voices, I cannot identify who I am talking to. I cannot see people sitting across a table from me. Moving around even familiar environs is extremely difficult, and always runs the danger of collision with people who assume I will see them and get out of their way. Seeing the computer even with multiple ways and levels of enhancements has become more difficult, and more painful.
Thursday’s procedure may improve the new disabilities.
Maybe.
The retina reattachment halted that. Part of that surgery included replacing the natural eye fluid with a silicone oil. The silicone helps to maintain pressure in the eye to keep the back of the eye "glued together." This can increase eye pressure and cause glaucoma, one of the few problems I didn’t have in either eye. Two kinds of eye drops kept that problem at bay. At one point the pressure was too low; stopping the drops on the doc’s recommendation saw a surge in pressure. Resumption of the drops brought that back under control.
From all physical signs from doctors looking at my eye, the reattachment was successful and "stayed together." Looking out from the eye, however, indicates different results. The vision was at a slow decline in the year since the surgery.
The specific problems have not been traditional signs of diabetic retinapathy. Before the retina reattachment, the cloud overwhelming my vision was dark, and had definite, noticeable onsets as "gunk" in the eye released This year’s decline has been different.
I suffered no sudden "setbacks," as I called the release of floaters. Two problems developed and worsened over time.
The first is the light sensitivity and my eye’s apparent inability to process light. Strong light sources blind me with their brilliance and glare. My eye experienced increasing difficulty adjusting to variable light, even that of inconstant and inconsistent outdoor shadows of leafy trees. The reverse also proved true. Not enough light just was not enough light. Night vision is blindness. Vision in overly bright light is blindness.
A new cloud also developed, much like bottled fog that I carry with me everywhere. This was not like the red cloud of the hemorrhage or the black cloud of developing retinapathy. The fog is very clean, and has been since post op. But as "clean" as it has stayed, it has thickened over time. After the reattachment, I could see more than four feet away with finger motion. Now I can barely see overall motion at one foot away.
Without cues of voices, I cannot identify who I am talking to. I cannot see people sitting across a table from me. Moving around even familiar environs is extremely difficult, and always runs the danger of collision with people who assume I will see them and get out of their way. Seeing the computer even with multiple ways and levels of enhancements has become more difficult, and more painful.
Thursday’s procedure may improve the new disabilities.
Maybe.
Thursday, September 13, 2012
Into the Light
This is something of a feedback/update post. The direct feedback answer is, unfortunately, "Yes, the eyesight is getting worse."
The retina reattachment procedure performed last January was not as successful as either I or the doctor had hoped. By the doc’s choice, the silicon oil remains in the vitreous as a pressure regulator to keep the vulnerable retina in place. I’d just as soon have it removed and see how things go on their own and know, ultimately, what I will–or won’t– have to work with going forward.
I do not blame my current retina specialist for the failure. I do blame Michael O’Brien at Koch Eye Associates for using the Cialis-induced vitreous hemorrhage to scare me into having the PRP surgery. O’Brien ignored that I told him, that other doctors had found it acceptable and successful to monitor the left eye retina closely but not go forward with PRP because the retina was entirely stable. O’Brien had tantalized the possibility that the vitreous hemorrhage was not from the Cialis. Time proved me right but there’s no consolation in that. If I had not done the PRP, the hemorrhage would have healed and I wouldn’t still be legally blind and losing more regularly.
Before the reattachment, things were going darker for me. The changes would be random setbacks as floaters dislodged. The aspect of the reattachment that required the vitreous to be drained solved that.
The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. Twilight for me is more akin to what nighttime used to be. My eyes cannot seem to spread light particles to cover areas. I see light sources as glaring beacons that add no atmospheric light.
I am blinded in daylight for the opposite effect. Too much light is just too much, too bright, blinding. Concentration on the keyboard allow me to see the marks on the keys, but looking to the TV I use as a huge monitor washes out all else and looking back to the keys is all but impossible. (I type in a half-ass mix of "proper" typing and hunt and peck that gives me a respectable but far from professional word rate. I had started fiction writing–and typing–before high school and had never been able to "unlearn" my personal progress to make better long-term progress in Mrs. Sprague’s freshman year typing class.)
Instead of seeing everything going dark, everything is washing out. Direction, intensity and sources of light have a huge impact on what and when I can see, more than ever.
The degradation is not random, nor constant, but does not improve after a while.
The retina reattachment procedure performed last January was not as successful as either I or the doctor had hoped. By the doc’s choice, the silicon oil remains in the vitreous as a pressure regulator to keep the vulnerable retina in place. I’d just as soon have it removed and see how things go on their own and know, ultimately, what I will–or won’t– have to work with going forward.
I do not blame my current retina specialist for the failure. I do blame Michael O’Brien at Koch Eye Associates for using the Cialis-induced vitreous hemorrhage to scare me into having the PRP surgery. O’Brien ignored that I told him, that other doctors had found it acceptable and successful to monitor the left eye retina closely but not go forward with PRP because the retina was entirely stable. O’Brien had tantalized the possibility that the vitreous hemorrhage was not from the Cialis. Time proved me right but there’s no consolation in that. If I had not done the PRP, the hemorrhage would have healed and I wouldn’t still be legally blind and losing more regularly.
Before the reattachment, things were going darker for me. The changes would be random setbacks as floaters dislodged. The aspect of the reattachment that required the vitreous to be drained solved that.
The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. Twilight for me is more akin to what nighttime used to be. My eyes cannot seem to spread light particles to cover areas. I see light sources as glaring beacons that add no atmospheric light.
I am blinded in daylight for the opposite effect. Too much light is just too much, too bright, blinding. Concentration on the keyboard allow me to see the marks on the keys, but looking to the TV I use as a huge monitor washes out all else and looking back to the keys is all but impossible. (I type in a half-ass mix of "proper" typing and hunt and peck that gives me a respectable but far from professional word rate. I had started fiction writing–and typing–before high school and had never been able to "unlearn" my personal progress to make better long-term progress in Mrs. Sprague’s freshman year typing class.)
Instead of seeing everything going dark, everything is washing out. Direction, intensity and sources of light have a huge impact on what and when I can see, more than ever.
The degradation is not random, nor constant, but does not improve after a while.
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.
Monday, April 30, 2012
Recommended Retina
The retina reattachment surgery in January had been performed by Magdalena G. Krzystolik of Southern New England Retina Associates
I heard of her from a former tenant, one who had undergone a successful procedure and spoke highly of this doctor. One medical professional I consulted knew her; he stated that her technical ability was outstanding but that her bedside manner not always so commendable.
I will always choose a competent and communicative doctor over a "nice" doctor.
My sense has been more that Dr. Krzystolik "has her moods." In addition to the surgery, I have had perhaps eight other appointments with her. She can be terse and unfriendly. But when my appointments coincided with her more "sociable moods," she really hit it out of the park with apparent comprehension of some of the less direct impacts of what has been happening to me.
A doctor with good bedside manner may maintain that reputation by giving no bad news or realistically grim possibilities in the outcome. Dr Krzystolik remained clear and honest with me about good and bad possibilities. I find honesty more important than friendly smiles and cheery optimism that may not even approach the border of realistic.
I commend and do recommend Dr. Krzystolik despite the fact that the retina reattachment surgery has not seen the success either she or I had hoped for. By the time I got to Dr. Krzystolik , the damage activated by Dr O’Brien’s PRP laser had progressed too far and for too long, thanks in large part to the indecisive delays by Dr. Arrigg at Joslin Center.
Blog readers know I am not afraid to point fingers or name names when it comes to the doctors whose offices I have passed through. Yet even while being direct, blunt, and sometimes angry, I have striven for truth and a level of fairness. I bring up Arrigg and Michael O’Brien specifically in this post to give any new google search reader of this post an idea of some balance in my opinion. Anyone searching for a retina specialist in Rhode Island and southern New England should be considering Dr. Krzystolik and her practice. No doctor may be able to deliver the desired results; at least Dr. Krzystolik has the integrity to deliver realistic expectations instead of hopeful but ultimately empty promises.
I heard of her from a former tenant, one who had undergone a successful procedure and spoke highly of this doctor. One medical professional I consulted knew her; he stated that her technical ability was outstanding but that her bedside manner not always so commendable.
I will always choose a competent and communicative doctor over a "nice" doctor.
My sense has been more that Dr. Krzystolik "has her moods." In addition to the surgery, I have had perhaps eight other appointments with her. She can be terse and unfriendly. But when my appointments coincided with her more "sociable moods," she really hit it out of the park with apparent comprehension of some of the less direct impacts of what has been happening to me.
A doctor with good bedside manner may maintain that reputation by giving no bad news or realistically grim possibilities in the outcome. Dr Krzystolik remained clear and honest with me about good and bad possibilities. I find honesty more important than friendly smiles and cheery optimism that may not even approach the border of realistic.
I commend and do recommend Dr. Krzystolik despite the fact that the retina reattachment surgery has not seen the success either she or I had hoped for. By the time I got to Dr. Krzystolik , the damage activated by Dr O’Brien’s PRP laser had progressed too far and for too long, thanks in large part to the indecisive delays by Dr. Arrigg at Joslin Center.
Blog readers know I am not afraid to point fingers or name names when it comes to the doctors whose offices I have passed through. Yet even while being direct, blunt, and sometimes angry, I have striven for truth and a level of fairness. I bring up Arrigg and Michael O’Brien specifically in this post to give any new google search reader of this post an idea of some balance in my opinion. Anyone searching for a retina specialist in Rhode Island and southern New England should be considering Dr. Krzystolik and her practice. No doctor may be able to deliver the desired results; at least Dr. Krzystolik has the integrity to deliver realistic expectations instead of hopeful but ultimately empty promises.
Tuesday, April 17, 2012
As Seen on TV
A friend told me he had seen an ad or feature on local TV for Koch Eye Associates. Dr. Koch himself appeared with a young female lawyer who had already had twenty-two sessions of PRP (Pan retinal photocoagulation). I had a total of six sessions.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
Friday, April 6, 2012
Getting the Boot
The Charcot foot is now in Stage Two.
Essentially, this means that most of the abnormal swelling is down and that it is in a period where it should, could, or might rehabilitate and restrengthen from reduced use. As no imaging showed any broken bones in my case, I did not keep it as absolutely rested and normally recommended, specifically to keep the leg and foot from completely atrophying on me.
I am aware that my legs, like my eyes, will never be what they were.
The Charcot foot had effects that no doctor warned me about. Maybe some of these things were coincidence in timing, but I am much too paranoid to be a big believer in coincidence.
My blood pressure skyrocketed at the same time the swelling developed. It has receded with the swelling, but not yet back down to prior levels, even with medication.
The prednisone that I have been eye dropping can also raise blood pressure, so that may be a futile battle at this point. My cynical worry is that the Lisinopril will turn what would be a sudden and fatal heart attack into something that will allow me to live with further debilitation.
The atrophy I had sought to prevent happened anyway. The foot and leg is used less during Stage One, and the swelling restricts nutrient flow, which can result in bone and tissue loss. The outcome for me is that the afflicted ankle collapsed. My right leg is now somewhat shorter than my left leg. I feel lopsided orientation when standing or walking. This has already put strain on left leg and has the potential to screw up my back.
Combined with blindness, I’m really disabled now. It’s screwed up my bowling as I tend not to stand straight or square and can’t see that my straight-throw alignment to the pins is off. Talking about this point is probably more leaning to bitchfest rather than informing about Charcot foot, so ‘nuff said.
Dry flaky skin over what was so massively swollen remains. I promise not to pass around another small sheet of dead skin to my bowling partners to show as "something cool" and identifying it only after they’ve been handling it. Maybe with the next larger piece, I will rehydrate it and feed it to the cats.
Like the ill advised PRP treatment that would prevent diabetic retinapathy, the Charcot foot will have permanent effects beyond my mismatched leg lengths. I’ve been prescribed and fitted for a leg brace, what the dumbass foot doctor said would be supportive but what the caster at the orthopedic appliance place said would be largely immobilizing. It’ll take a few weeks to get in; and until then, it’s like the long term prognosis on the reattachment surgery: wait and see, as best as I can.
Essentially, this means that most of the abnormal swelling is down and that it is in a period where it should, could, or might rehabilitate and restrengthen from reduced use. As no imaging showed any broken bones in my case, I did not keep it as absolutely rested and normally recommended, specifically to keep the leg and foot from completely atrophying on me.
I am aware that my legs, like my eyes, will never be what they were.
The Charcot foot had effects that no doctor warned me about. Maybe some of these things were coincidence in timing, but I am much too paranoid to be a big believer in coincidence.
My blood pressure skyrocketed at the same time the swelling developed. It has receded with the swelling, but not yet back down to prior levels, even with medication.
The prednisone that I have been eye dropping can also raise blood pressure, so that may be a futile battle at this point. My cynical worry is that the Lisinopril will turn what would be a sudden and fatal heart attack into something that will allow me to live with further debilitation.
The atrophy I had sought to prevent happened anyway. The foot and leg is used less during Stage One, and the swelling restricts nutrient flow, which can result in bone and tissue loss. The outcome for me is that the afflicted ankle collapsed. My right leg is now somewhat shorter than my left leg. I feel lopsided orientation when standing or walking. This has already put strain on left leg and has the potential to screw up my back.
Combined with blindness, I’m really disabled now. It’s screwed up my bowling as I tend not to stand straight or square and can’t see that my straight-throw alignment to the pins is off. Talking about this point is probably more leaning to bitchfest rather than informing about Charcot foot, so ‘nuff said.
Dry flaky skin over what was so massively swollen remains. I promise not to pass around another small sheet of dead skin to my bowling partners to show as "something cool" and identifying it only after they’ve been handling it. Maybe with the next larger piece, I will rehydrate it and feed it to the cats.
Like the ill advised PRP treatment that would prevent diabetic retinapathy, the Charcot foot will have permanent effects beyond my mismatched leg lengths. I’ve been prescribed and fitted for a leg brace, what the dumbass foot doctor said would be supportive but what the caster at the orthopedic appliance place said would be largely immobilizing. It’ll take a few weeks to get in; and until then, it’s like the long term prognosis on the reattachment surgery: wait and see, as best as I can.
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.
Saturday, February 4, 2012
With Nothing Left to Lose
Process and paperwork with the hospital helped delay the time between the December 14 setback and the reattachment surgery. As was or will be confessed elsewhere, I also lied about the surgery date or that I was having surgery at all.
The friend who raised the question of timing quoted his independent research that says retina reattachment surgery should be done within 24 hour after sudden retina separation. That is true, but doesn’t hold the same for diabetic retinapathy, which is a gradual rather than a sudden release of the retina from the back of the eye and/pr from the brain.
The diabetic malady is gradual. By Fall 2011 I knew things were going fast, even if I could not know for certain how much of the loss was retinapathy and how much rooted from all the other problems in my beleaguered eyes.
And let’s be real: my retina started separation after the third PRP session in January 2010, judging by the flashers. Can I blame this doctor for a one-month delay when those at Joslin let my condition further deteriorate for over a year while they strung me along with other "preparation fir the worst surgeries" that they had no real intention of doing?
I blame Joslin on an emotional level, but not on my cold logical rational patterns of thinking. No one wanted to do surgery on someone’s only functioning eye until there was absolutely nothing else to lose.
When my current doctor agreed to the surgery, she and I were in perfect agreement that I had reached that point. To her credit, she still made me seek a second opinion.
The rush to retinapathy reattachment is that once separated, the retina begins to harden. Once this happens, it no longer has the flexibility to be reattached as completely, or at all.
This is being written on 21 December 2011, a month before the surgery that could restore me to passable functionality or take it all away. If this is being read on the blog, either all went well enough for me to still navigate the computer, someone is helping me settle the affairs of this blog, or someone found and posted it posthumously. (Note 2/4/12: I am just barely able to do this myself.) Yeah, I’m fatalistic like that. While the doctor was realistic about the risks, I sensed true optimism from her. Chances are, all went well.
The friend who raised the question of timing quoted his independent research that says retina reattachment surgery should be done within 24 hour after sudden retina separation. That is true, but doesn’t hold the same for diabetic retinapathy, which is a gradual rather than a sudden release of the retina from the back of the eye and/pr from the brain.
The diabetic malady is gradual. By Fall 2011 I knew things were going fast, even if I could not know for certain how much of the loss was retinapathy and how much rooted from all the other problems in my beleaguered eyes.
And let’s be real: my retina started separation after the third PRP session in January 2010, judging by the flashers. Can I blame this doctor for a one-month delay when those at Joslin let my condition further deteriorate for over a year while they strung me along with other "preparation fir the worst surgeries" that they had no real intention of doing?
I blame Joslin on an emotional level, but not on my cold logical rational patterns of thinking. No one wanted to do surgery on someone’s only functioning eye until there was absolutely nothing else to lose.
When my current doctor agreed to the surgery, she and I were in perfect agreement that I had reached that point. To her credit, she still made me seek a second opinion.
The rush to retinapathy reattachment is that once separated, the retina begins to harden. Once this happens, it no longer has the flexibility to be reattached as completely, or at all.
This is being written on 21 December 2011, a month before the surgery that could restore me to passable functionality or take it all away. If this is being read on the blog, either all went well enough for me to still navigate the computer, someone is helping me settle the affairs of this blog, or someone found and posted it posthumously. (Note 2/4/12: I am just barely able to do this myself.) Yeah, I’m fatalistic like that. While the doctor was realistic about the risks, I sensed true optimism from her. Chances are, all went well.
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.
Sunday, January 8, 2012
What's in a Name?
Misnomers are the misnaming of things. Often, according to my using definition, it is a name or label that is close but not quite accurate.
I’ll start with my own misnomer itsy, from tha tag cloud on this blog’s internal links. I use the ter, "medical malpractice in a general sense, not as a legal definition. There’s just wrongness in not giving patients all the necessary information to make informed decisions, including risk factors. When I label a post "medical malpractice," I am not prepping for a lawsuit but am indicating a misuse of power or authority that doctors usually hold over patients. My using definition includes doctors who do not report potential side effects back to the pharmaceutical companies that send thedocs on vacations, or the government agencies that are supposed to regulate them. I doubt any doctor would ever get sued for that.
I don’t quite get the PRP laser name either. The "panretinal" raises no flags for me. "Photocoagulation" does. The photo part is OK in general terms, but I can’t grasp the "coagulation" part.
To coagulate is to thicken or to clot, which is not necessarily the problem in diabetic retinapathy. The blood does thicken with increased sugar content, but the exact nature of the problem is the formation of new, weaker cells on the retina that have higher risk of bursting because they are newer and weaker.
Doctors call the bleeding stage "proliferative" while "nonproliferative" is the growing stage for new vessels. To my cynical mindset, the medical profession has the terms reversed solely to confuse the patient. The proliferation of nuclear weapons is while more are being made and spread across the world, not the stage where they are being used to wipe land and people off the globe.
The next misnomer is a universal term that angers me every time I hear it: "Obama Care." My objection is not a political one to any side pro or con. My issue is with the media that dubbed the program this and has maintained it.
Medical care is when you go to a doctor or hospital when you are sick. This "care" plan does not even come close to providing that. The proper term is Obama Coverage. The "care" is for insurance by the same companies who want to deny claims and limit care if it is deemed too expensive. Why has no one caught on to that fact? If you get sick and hospitalized in a country with universal health care, you get treatment, not a percentage of bills paid while others are disputed and stuck to you.
The more Obama "Care" is discussed, the more we hear the term. The more we hear the term, the more we forget how inaccurate it is, which is the final objective of this intentional media lie.
We wouldn’t want commercial media advertisers to go out of business, would we?.
I’ll start with my own misnomer itsy, from tha tag cloud on this blog’s internal links. I use the ter, "medical malpractice in a general sense, not as a legal definition. There’s just wrongness in not giving patients all the necessary information to make informed decisions, including risk factors. When I label a post "medical malpractice," I am not prepping for a lawsuit but am indicating a misuse of power or authority that doctors usually hold over patients. My using definition includes doctors who do not report potential side effects back to the pharmaceutical companies that send thedocs on vacations, or the government agencies that are supposed to regulate them. I doubt any doctor would ever get sued for that.
I don’t quite get the PRP laser name either. The "panretinal" raises no flags for me. "Photocoagulation" does. The photo part is OK in general terms, but I can’t grasp the "coagulation" part.
To coagulate is to thicken or to clot, which is not necessarily the problem in diabetic retinapathy. The blood does thicken with increased sugar content, but the exact nature of the problem is the formation of new, weaker cells on the retina that have higher risk of bursting because they are newer and weaker.
Doctors call the bleeding stage "proliferative" while "nonproliferative" is the growing stage for new vessels. To my cynical mindset, the medical profession has the terms reversed solely to confuse the patient. The proliferation of nuclear weapons is while more are being made and spread across the world, not the stage where they are being used to wipe land and people off the globe.
The next misnomer is a universal term that angers me every time I hear it: "Obama Care." My objection is not a political one to any side pro or con. My issue is with the media that dubbed the program this and has maintained it.
Medical care is when you go to a doctor or hospital when you are sick. This "care" plan does not even come close to providing that. The proper term is Obama Coverage. The "care" is for insurance by the same companies who want to deny claims and limit care if it is deemed too expensive. Why has no one caught on to that fact? If you get sick and hospitalized in a country with universal health care, you get treatment, not a percentage of bills paid while others are disputed and stuck to you.
The more Obama "Care" is discussed, the more we hear the term. The more we hear the term, the more we forget how inaccurate it is, which is the final objective of this intentional media lie.
We wouldn’t want commercial media advertisers to go out of business, would we?.
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.
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 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!
Subscribe to:
Posts (Atom)