The Charcot "sharko" Foot seems settled and healed. Perhaps I should do another visit with the good foot doctor, Thomas Mancini, before declaring that, bur I say so from observation of my own body.
The biggest "wild card" advantage I had during the Charcot cycle actually came from the retina reattachment. I was dropping prednisone into my eye, which regulated and reduced the swelling.
On the eye doctor’s advice, I ceased the prednisone. I did this with reluctance; when I tried getting off the prednisone in spring of 2012, the Charcot Foot, then erroneously declared "past Phase One according to Doctor Dumbass, flared worse than before.
This time, judging by the lack of a flare up, Phase One was truly over. The leg has not reswelled with discontinuation of the eye drop prednisone.
I had discussed the side effects of the prednisone with my eye doctor on previous occasions. She wrote off the stomach problems as a probable diabetic thing, perhaps bad kidneys. Maybe her opinion changed the morning she treated the post-victrectomy pressure build up. That was a bad morning altogether, even before she stuck a needle in my eye. Perhaps watching me retch acidic bile convinced her that the prednisone was having the stomach acid overproduction. Who knows? Maybe my puking in her trash barrel was the real reason she stuck a needle in my eye.
With the prior massive swelling of the left leg below the knee last fall, my already hindered diabetic circulation was further impaired. This had led to the gangrene infection on the toe, the problem that sent me to Sturdy Hospital in May. That all recovered nicely, without amputation but with a loss of some fleshy tissue from the big toe. More devastating, the swelling reduced circulation to the structure of the foot. I did not particularly stay off the foot, particularly with Dr. Dumbass telling me all was well. During this time, the bones could not get the nutrients they needed. Those nutrients were there; the semi-regular blood tests always show my calcium on the high end of the scale. While swelled, the center bone of the ankle and the inner portion of the hell bone weakened, rolled and collapsed. My right leg shortened about an inch, and it will never be safe for me to put weight directly on that ankle. The crow boot I wear everywhere except to bed and in the shower keeps the weight off and protects the leg with immobilization. I don’t complain about the Crow Boot. Without it, I would rely on crutches, and there’s not as much I could do with my hands otherwise occupied. The immobilization by the Crow Boot has had its own side effect. My calf muscle has diminished, to the point that it is noticeably smaller than the left calf. The Crow Boot is not a temporary cast or brace, but a permanent fixture.
It is what it is. I am accepting about it, even when I freely acknowledge that the combination of bad leg and blind eyes is a particularly difficult combination.
Difficult, but not insurmountable.
Showing posts with label Retina Reattachment. Show all posts
Showing posts with label Retina Reattachment. Show all posts
Friday, March 1, 2013
Thursday, February 14, 2013
Eating Crow
I mentioned the orthopedic brace that is a permanent fixture, but neglected to ever cover what it was here. It’s called a Crow Boot. Pictures are readily available through any online search. I could post one here, but considering the blind angle, I decided early on that this would be a text site with no pictures.
The Crow Boot has two halves, upper and lower. It’s made of lightweight but highly durable black plastic and is lined with lightweight foam. When fitted for it originally, they took a cast mold of my leg. They have had to add foam as the Charcot swelling on the leg decreased. My foot goes into the lower half. The upper half then interlocks and is held in place with velcro.
The Crow Boot is needed because of the Charcot Foot. As it turned out, prednisone being dropped in my eye post retina reattachment went to work on the swelling of the Charcot Foot. When I had temporarily discontinued the prednisone, the foot swelled back up worse than before. My underlying injury seems to have been tendon damage rather than a broken bone, and the foot thickly swelled up to and even slightly beyond the knee. This swelling reduced circulation already naturally impeded by more than 35 years of diabetes. Oddly enough, as long as I kept exerting and moving I was fine. When I truly stayed off the foot–after last May’s development of a toes infection also triggered by the lack of circulation–the ankle collapsed. The central bone in the ankle, the one on which the tibia’s cupped end sits, and the inner part of the heel bone soften, collapsed and twisted. My right leg is now about a half inch shorter than the left.
The Crow Boot does nothing directly for any aspect of Charcot Foot. It compensates for the structural collapse and weakness that is a permanent disability.
The Crow boot immobilizes the ankle to make sure I cannot do further damage to myself. It also diverts weight from the ankle to the ball of the foot or the upper calf. It has a lifter to compensate for the different leg lengths.
I wear the Crow Boot when not in bed or in the shower. Even to get up in the middle of the night for a leak or a snack, I need to put the Crow Boot on. I’m still living in a place with way too many stairs for a blind guy with a bad leg.
Without the boot, I would need crutches. Times when I do "cheat" and use neither the boot nor the crutches leave me feeling the error for a few days.
I do not complain about the boot. I’d be able to marginally get around on crutches, but all these stairs would be a lot more difficult, and I would not be able to bowl. The Crow Boot is bulky, and on my right foot, so I probably would not be able to drive with it due to pedal spacing, but driving was lost a half year before due to the eyesight. The boot is inflexible at the ankle and sole, so even slight bumps or lumps in a smooth surface can make me feel like I am about to fall over.
When I say I am limping along, I mean that literally. Blind eyes and a bad leg is an especially bad combination.
The Crow Boot has two halves, upper and lower. It’s made of lightweight but highly durable black plastic and is lined with lightweight foam. When fitted for it originally, they took a cast mold of my leg. They have had to add foam as the Charcot swelling on the leg decreased. My foot goes into the lower half. The upper half then interlocks and is held in place with velcro.
The Crow Boot is needed because of the Charcot Foot. As it turned out, prednisone being dropped in my eye post retina reattachment went to work on the swelling of the Charcot Foot. When I had temporarily discontinued the prednisone, the foot swelled back up worse than before. My underlying injury seems to have been tendon damage rather than a broken bone, and the foot thickly swelled up to and even slightly beyond the knee. This swelling reduced circulation already naturally impeded by more than 35 years of diabetes. Oddly enough, as long as I kept exerting and moving I was fine. When I truly stayed off the foot–after last May’s development of a toes infection also triggered by the lack of circulation–the ankle collapsed. The central bone in the ankle, the one on which the tibia’s cupped end sits, and the inner part of the heel bone soften, collapsed and twisted. My right leg is now about a half inch shorter than the left.
The Crow Boot does nothing directly for any aspect of Charcot Foot. It compensates for the structural collapse and weakness that is a permanent disability.
The Crow boot immobilizes the ankle to make sure I cannot do further damage to myself. It also diverts weight from the ankle to the ball of the foot or the upper calf. It has a lifter to compensate for the different leg lengths.
I wear the Crow Boot when not in bed or in the shower. Even to get up in the middle of the night for a leak or a snack, I need to put the Crow Boot on. I’m still living in a place with way too many stairs for a blind guy with a bad leg.
Without the boot, I would need crutches. Times when I do "cheat" and use neither the boot nor the crutches leave me feeling the error for a few days.
I do not complain about the boot. I’d be able to marginally get around on crutches, but all these stairs would be a lot more difficult, and I would not be able to bowl. The Crow Boot is bulky, and on my right foot, so I probably would not be able to drive with it due to pedal spacing, but driving was lost a half year before due to the eyesight. The boot is inflexible at the ankle and sole, so even slight bumps or lumps in a smooth surface can make me feel like I am about to fall over.
When I say I am limping along, I mean that literally. Blind eyes and a bad leg is an especially bad combination.
Monday, January 28, 2013
Getting Complicated
The post-op complication of the victrectomy was an intense rise of pressure in the eye five days after the procedure, during which the silicone oil placed inside the eye last year was swapped out with saline solution.
Pressure problems in the eye are known as glaucoma, pretty much whatever causes it. I traditionally have and maintain good eye pressure, usually between 14 and 18. Over 25 is a cause for some concern. Following the retina reattachment the pressure rose when my doctor allowed the elimination of drops that regulate pressure. That prior and temporary effect did not cause the agony that the recent spell did.
My roommate was tempted to bring me to the hospital. More cavalier, I took percocet and Nyquil and went to bed. The roommate called Doctor Krzystolik’s answering service after ten. She got back to us with willingness to meet us at her office at midnight. I deferred to 7 AM, and the doctor met us then in her office local to me, without any assisting staff.
I was candid that I had lifted and exerted more than I probably should have. She said that effort probably did not cause the problem. One friend did try assigning blame to Krzystolik, that she may have overfilled the eye. I reject the entire line of thought as desperately seeking to assign blame to a standard risk of the procedure. Unlike when I was afflicted with cataract and PRP treatment by associates at Koch Eye, Dr. Krzystolik has been clear and honest with every risk of every step. This blog shows I am not afraid to assign blame and point fingers when appropriate. I don’t find it appropriate this time.
She relieved the pressure by reducing the fluid in the eye with a needle through the center. My roommate was astounded that I didn’t even flinch. I felt it, but it didn’t come across like you’d think a needle in the eye would. I’ve been told by doctors and others that I have a high pain threshold, so I may not be the best judge.
She repeated the process in an appointment later that afternoon. My roommate didn’t watch so closely that time. Through the reduced pressure and regulating drops, the eye pressure has stayed in its normal range. The needles caused two more of those bubbles or cornea scars, but these have also diminished as time marched on, day by day then week by week.
Her willingness to meet me any and all hours and her subsequent treatment have raised my regard for Dr. Krzystolik. The eye still gives pain, but this is manageable with over-the-counter relievers, I’m limping along with my usual steps and stumbles, which my roommate often finds comical to watch.
Pressure problems in the eye are known as glaucoma, pretty much whatever causes it. I traditionally have and maintain good eye pressure, usually between 14 and 18. Over 25 is a cause for some concern. Following the retina reattachment the pressure rose when my doctor allowed the elimination of drops that regulate pressure. That prior and temporary effect did not cause the agony that the recent spell did.
My roommate was tempted to bring me to the hospital. More cavalier, I took percocet and Nyquil and went to bed. The roommate called Doctor Krzystolik’s answering service after ten. She got back to us with willingness to meet us at her office at midnight. I deferred to 7 AM, and the doctor met us then in her office local to me, without any assisting staff.
I was candid that I had lifted and exerted more than I probably should have. She said that effort probably did not cause the problem. One friend did try assigning blame to Krzystolik, that she may have overfilled the eye. I reject the entire line of thought as desperately seeking to assign blame to a standard risk of the procedure. Unlike when I was afflicted with cataract and PRP treatment by associates at Koch Eye, Dr. Krzystolik has been clear and honest with every risk of every step. This blog shows I am not afraid to assign blame and point fingers when appropriate. I don’t find it appropriate this time.
She relieved the pressure by reducing the fluid in the eye with a needle through the center. My roommate was astounded that I didn’t even flinch. I felt it, but it didn’t come across like you’d think a needle in the eye would. I’ve been told by doctors and others that I have a high pain threshold, so I may not be the best judge.
She repeated the process in an appointment later that afternoon. My roommate didn’t watch so closely that time. Through the reduced pressure and regulating drops, the eye pressure has stayed in its normal range. The needles caused two more of those bubbles or cornea scars, but these have also diminished as time marched on, day by day then week by week.
Her willingness to meet me any and all hours and her subsequent treatment have raised my regard for Dr. Krzystolik. The eye still gives pain, but this is manageable with over-the-counter relievers, I’m limping along with my usual steps and stumbles, which my roommate often finds comical to watch.
Sunday, January 27, 2013
Victrectomy Post Op
I described "scars" on the cornea that I thought were left from incisions necessary during the victrectomy. This procedure involves draining the eye of existing fluids and replacing it, usually with saline solution. My highly recommended retina specialist who performed the January 10 procedure, Doctor Krzystolik, said that the circles I can see are more likely to be drops of the silicone oil that was put in my eye during the 2012 retina reattachment. Her theory is probably the case. She’s the doctor and has more experience in these things. From my perspective, the larger circles have begun to either dissipate or have merged.
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....
Tuesday, January 22, 2013
Blinded on the Right
Wearing the bandage and shield following the victrectomy is a difficult thing. My right eye is blinder than the left and has its own set of complications.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.
Monday, January 21, 2013
Oil Change
During the January, 2012 retina reattachment of the left eye, the dirty vitreous fluid at the center of the eye was exchanged with silicone oil. Yeah, I guess that amounts to a boob job for the eye. Lucky me, I guess, that no one told me it was too round.
As the vision diminished through 2012, my theory was that the silicone oil got dirty with detritus from the beleaguered eye. Doctor Krzystolik wasn’t too sure, but her reattachment seemed to hold in place and remain healthy looking in and of itself despite increasing vision loss.
This past January 10th, she performed a victrectomy. This seemed less risky than the reattachment as it seemed more basic. Instead of elaborate "welding" on the back of the eye, they would simply be changing the fluid on the inside to a saline solution.
I was surprised to hear the potential risks as Doctor Krzystolik read them off, but these factors did not encourage the slightest hesitancy. I’d gotten too blind to do nothing while any hope remained.
While some doctors do these victrectomy procedures under local anesthesia, I was put under. Maybe Doctor Krzystolik was afraid I’d wake and start giving directions or criticisms. I’d had local-only during the cataract surgery and prefer total unconsciousness and just waking with everything all done.
A bandage and eye shield were set in place. I would be unable to determine any change until the end of the day when eye drops had to be applied.
My range of vision is improved. I can see the knobs and pulls on kitchen cabinetry from across the kitchen. In good lighting, I can see details and if someone is nearby.
But there have been side effects. Complications arose.
I blame Doctor Krzystolik for none of them. I think that on a blog that has been clear with the failures and bad practices of other doctors, I should be clear that Doctor Krzystolik has done very well by me.
As the vision diminished through 2012, my theory was that the silicone oil got dirty with detritus from the beleaguered eye. Doctor Krzystolik wasn’t too sure, but her reattachment seemed to hold in place and remain healthy looking in and of itself despite increasing vision loss.
This past January 10th, she performed a victrectomy. This seemed less risky than the reattachment as it seemed more basic. Instead of elaborate "welding" on the back of the eye, they would simply be changing the fluid on the inside to a saline solution.
I was surprised to hear the potential risks as Doctor Krzystolik read them off, but these factors did not encourage the slightest hesitancy. I’d gotten too blind to do nothing while any hope remained.
While some doctors do these victrectomy procedures under local anesthesia, I was put under. Maybe Doctor Krzystolik was afraid I’d wake and start giving directions or criticisms. I’d had local-only during the cataract surgery and prefer total unconsciousness and just waking with everything all done.
A bandage and eye shield were set in place. I would be unable to determine any change until the end of the day when eye drops had to be applied.
My range of vision is improved. I can see the knobs and pulls on kitchen cabinetry from across the kitchen. In good lighting, I can see details and if someone is nearby.
But there have been side effects. Complications arose.
I blame Doctor Krzystolik for none of them. I think that on a blog that has been clear with the failures and bad practices of other doctors, I should be clear that Doctor Krzystolik has done very well by me.
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.
Tuesday, November 13, 2012
Excuses...
The blog has been neglected lately for a few reasons that accumulate enough to come across as excuses.
First, and always best, is that my eyesight continues to deteriorate. Everything’s harder for me, including the computer, and I can spend less time on here before my eyes just burn out.
That burning out limitations works a few other ways too. I am, eleven months after the reattachment surgery, still on four different eye drops, and some recent events temporarily necessitated a fifth. The drops greatly reduce my vision for a few hours afterwards.
Despite the fact that I am really and truly disabled, I have not yet divested myself of all old responsibilities and some of those became quite taxing over the last couple weeks. Things seem to be under control again. I impressed even myself with some of the things I can do blind and am grateful for the lesson that I could still do some things. But the other side of that coin is that I know I don’t want to be doing most of those things. The effort just takes too much out of me.
The last excuse is my favorite. I submitted a shelved novel to a publisher and got a nibble. There’s promise and potential but far from any type of guarantee, but such a chance needed to be pursued. Again, my functional computer time is physically limited and the holdover responsibilities interfered even with the full writing goal, but I got "a more traditional synopsis" out tonight, so can eke out some time to resume posts.
I will be turning back to general diabetic issues of diet.
First, and always best, is that my eyesight continues to deteriorate. Everything’s harder for me, including the computer, and I can spend less time on here before my eyes just burn out.
That burning out limitations works a few other ways too. I am, eleven months after the reattachment surgery, still on four different eye drops, and some recent events temporarily necessitated a fifth. The drops greatly reduce my vision for a few hours afterwards.
Despite the fact that I am really and truly disabled, I have not yet divested myself of all old responsibilities and some of those became quite taxing over the last couple weeks. Things seem to be under control again. I impressed even myself with some of the things I can do blind and am grateful for the lesson that I could still do some things. But the other side of that coin is that I know I don’t want to be doing most of those things. The effort just takes too much out of me.
The last excuse is my favorite. I submitted a shelved novel to a publisher and got a nibble. There’s promise and potential but far from any type of guarantee, but such a chance needed to be pursued. Again, my functional computer time is physically limited and the holdover responsibilities interfered even with the full writing goal, but I got "a more traditional synopsis" out tonight, so can eke out some time to resume posts.
I will be turning back to general diabetic issues of diet.
Tuesday, October 2, 2012
Post-op Pattern
The retina reattachment procedure did not go as well as either my eye doctor or I had hoped. I dealt with that disappointment OK, all things considered.
I noticed a pattern that is giving me reason to look at things more deeply, so to speak. I have noticed a definite pattern that my eyesight gets worse. When it recovers from the visit, it does .
My theory is the light sensitivity effect. Glare is worse, sensitivity to light is worse and darkness vision is worse, all worse aftert each exam.
In these visits, they are dilating my eye and strobing the eye with very bright light. This is how the doctor is able to see the retina to note changes. I think this has the same damaging effect as staring at the sun.
I don’t see the point of going to the doctor–even this very good doctor–to be told I can’t see.
The eye is unstable, and the condition is currently made worse by the resumption of eye drops for eye pressure and the report of a cornea scratch. There’s more to the latter, and those have the texture of anchovy paste and the effect of making things worse.
I still have a procedure to go. The center of my eye is filled with silicone oil, which is meant to keep pressure on the retina to keep it in place.to be drained. My realistic hope is that the oil has gotten clouded over time and that the procedure will ewatore some acuity.
Other things to hope for are just not realistic. For me, realism always trumps optimism. The doctor wants to continue waiting before changing the silicone oil. If it is potentially creating a glaucoma problem, and if my vision worsens every time I am examined, we’re crossing the threshold of the treatment being worse than the disease.
I noticed a pattern that is giving me reason to look at things more deeply, so to speak. I have noticed a definite pattern that my eyesight gets worse. When it recovers from the visit, it does .
My theory is the light sensitivity effect. Glare is worse, sensitivity to light is worse and darkness vision is worse, all worse aftert each exam.
In these visits, they are dilating my eye and strobing the eye with very bright light. This is how the doctor is able to see the retina to note changes. I think this has the same damaging effect as staring at the sun.
I don’t see the point of going to the doctor–even this very good doctor–to be told I can’t see.
The eye is unstable, and the condition is currently made worse by the resumption of eye drops for eye pressure and the report of a cornea scratch. There’s more to the latter, and those have the texture of anchovy paste and the effect of making things worse.
I still have a procedure to go. The center of my eye is filled with silicone oil, which is meant to keep pressure on the retina to keep it in place.to be drained. My realistic hope is that the oil has gotten clouded over time and that the procedure will ewatore some acuity.
Other things to hope for are just not realistic. For me, realism always trumps optimism. The doctor wants to continue waiting before changing the silicone oil. If it is potentially creating a glaucoma problem, and if my vision worsens every time I am examined, we’re crossing the threshold of the treatment being worse than the disease.
Friday, September 14, 2012
Out of the Dark
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. The degradation is not random, but it is constant.
In standard check ups on diabetic eyes, the eyes are dilated with drops so the doctor can look through the widened pupil and see the retina. In this process, they strobe the eye with intense light.
I do not remember this ever being done as a child. The first such exam I remember was when I was twenty-one. I remember it specifically not just because I was blinded by the unyielding brightness into the next day. That exam marked the definite beginning of "diabetic eye condition" of light sensitivity. Things were never the same, never as comfortable, afterwards.
My recent "setbacks" in vision have all occurred after similar exams by the eye doctor who performed the retina reattachment. I say that as statement of fact and am not blaming her for the recent degradation or the lack of success for the reattachment procedure. She is examining the eye according to generally accepted practice.
She told me after the first exam she performed when I became her patient that I had the most complicated set of eye problems she had encountered. While I think the "hazing in" form of increased blindness I have been noticing is directly rooted from the retina issue, I don’t deny that other factors could be at work.
My vision is fading to bright cloud after each follow up visit. Each setback has the computer brighter, with details such as type on the screen more faded or "grayed out." Adjustment between sources of light and dark is more difficult after each visit. Any color send when looking at the bright box of the TV is further washed out for the brightness of the screen.
This became a hot issue for me this week because I tried mowing the lawn. Between shadows in the yard cast by houses and trees and even worse, changing light conditions as clouds kept blocking then releasing the sun’s direct brilliance, I was unable to do it. Never mind that the bum leg was bothering; I just simply did not have the visual acuity to see what was cut and wasn’t. My field of vision is narrowed and my range of vision really couldn’t discern much beyond the front of the mower. I just could not do it and that is gnawing at me.
I‘ll be talking to the doctor about this after the next visit, for sure. I’ll be holding onto the hope that the next procedure–draining the silicone oil out of the eye and replacing it with saline solution–will clear out any tiny matter that may be acting as "morning ground fog" in my vision. If that’s true, I will learn to content myself with prior levels of blindness as I had earlier this year. If not...well, hopefully I will continue to prove my resilience and be able to cope with that too.
It’s been a hell of a year.
In standard check ups on diabetic eyes, the eyes are dilated with drops so the doctor can look through the widened pupil and see the retina. In this process, they strobe the eye with intense light.
I do not remember this ever being done as a child. The first such exam I remember was when I was twenty-one. I remember it specifically not just because I was blinded by the unyielding brightness into the next day. That exam marked the definite beginning of "diabetic eye condition" of light sensitivity. Things were never the same, never as comfortable, afterwards.
My recent "setbacks" in vision have all occurred after similar exams by the eye doctor who performed the retina reattachment. I say that as statement of fact and am not blaming her for the recent degradation or the lack of success for the reattachment procedure. She is examining the eye according to generally accepted practice.
She told me after the first exam she performed when I became her patient that I had the most complicated set of eye problems she had encountered. While I think the "hazing in" form of increased blindness I have been noticing is directly rooted from the retina issue, I don’t deny that other factors could be at work.
My vision is fading to bright cloud after each follow up visit. Each setback has the computer brighter, with details such as type on the screen more faded or "grayed out." Adjustment between sources of light and dark is more difficult after each visit. Any color send when looking at the bright box of the TV is further washed out for the brightness of the screen.
This became a hot issue for me this week because I tried mowing the lawn. Between shadows in the yard cast by houses and trees and even worse, changing light conditions as clouds kept blocking then releasing the sun’s direct brilliance, I was unable to do it. Never mind that the bum leg was bothering; I just simply did not have the visual acuity to see what was cut and wasn’t. My field of vision is narrowed and my range of vision really couldn’t discern much beyond the front of the mower. I just could not do it and that is gnawing at me.
I‘ll be talking to the doctor about this after the next visit, for sure. I’ll be holding onto the hope that the next procedure–draining the silicone oil out of the eye and replacing it with saline solution–will clear out any tiny matter that may be acting as "morning ground fog" in my vision. If that’s true, I will learn to content myself with prior levels of blindness as I had earlier this year. If not...well, hopefully I will continue to prove my resilience and be able to cope with that too.
It’s been a hell of a year.
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.
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.
Wednesday, May 30, 2012
Imprisonment
I must confess that I am not the best patient in general, but that the events at Sturdy specifically made things worse.
Sturdy Hospital seems to have a great reputation among the people I know, although I never asked anyone I know who is more from the Attleboro than Providence area. Sturdy’s good reputation earned specific regard for the emergency room and trauma care.
I had one surge of frustration in the ER Friday night. When I needed to urinate, that simple objective was blocked due to footwear. They didn’t want me moving without the skid-pad socks or something so didn’t want me using a bathroom. I remember having a flare of temper about that simple bodily function becoming a "project." My fever was at a height and I accept full blame for the flare up. Both from my emergency care that night and from the retina reattachment surgery of last January, I have no complaint or criticism of Sturdy Hospital or its employees.
I’ll admit it; sometimes I can be difficult. Throughout the weekend, , I had been poked and bled out continuously. That will sour anyone’s temperament.
Intravenously, I was fed various antibiotic cocktails. It seems the IV monitor sensed emptiness continuously, and the machine made rude, awakening noises.
I was restricted to the bed by the hospital’s fear of a trip-and-fall lawsuit rather than by my disabilities.
So I may very well have been testy by imprisonment and restriction and sleep deprivation. Unfortunately. Justifiable complaints flooded me fast and furiously after those first nudges.
It took an entire day to stop the "nurses" from putting an unwashed urinal bottle on my food table.
By machines, staff or another patient, I was being woken constantly and always either too hot or frigidly cold.
The Charcot foot was back to maximum swelling and pain; this was the probable cause for the toe infection.
I could get answers to no question.
My insulin regiment had been changed, then changed back and the on-duty person clearly did not understand how insulin worked.
Even after constant explanations and instructions at every dose all weekend, the staff could not get the eye drops required post-retina reattachment right; this increased the prednisone that gave me so many other problems.
My blood sugar was being lowered by number management rather than how I felt. This always results , in depression and irritability on biochemical levels.
The final slice to my frayed nerves was the guy down the hall, the one who insisted on drama queen screaming every time the nurses did whatever it was they were doing, any time day or night. His screams were fake, like those of a four year old who screams out for the attention of being potentially hurt rather than because he was hurt.
Maybe my harsh judgment of this other patient was unfair, considering I am both insensitive and have an extremely high pain threshold. But when I called out "Shut up and take it like a man, you wuss!" all the fake cries of "Ouch! Oooh! God damn it, lady!" ceased instantly.
So by the time Dr. Paz interrupted my already cold breakfast on Sunday morning, I was alert to problems because I had seen problems, and of no mind to tolerate further ones....
Sturdy Hospital seems to have a great reputation among the people I know, although I never asked anyone I know who is more from the Attleboro than Providence area. Sturdy’s good reputation earned specific regard for the emergency room and trauma care.
I had one surge of frustration in the ER Friday night. When I needed to urinate, that simple objective was blocked due to footwear. They didn’t want me moving without the skid-pad socks or something so didn’t want me using a bathroom. I remember having a flare of temper about that simple bodily function becoming a "project." My fever was at a height and I accept full blame for the flare up. Both from my emergency care that night and from the retina reattachment surgery of last January, I have no complaint or criticism of Sturdy Hospital or its employees.
I’ll admit it; sometimes I can be difficult. Throughout the weekend, , I had been poked and bled out continuously. That will sour anyone’s temperament.
Intravenously, I was fed various antibiotic cocktails. It seems the IV monitor sensed emptiness continuously, and the machine made rude, awakening noises.
I was restricted to the bed by the hospital’s fear of a trip-and-fall lawsuit rather than by my disabilities.
So I may very well have been testy by imprisonment and restriction and sleep deprivation. Unfortunately. Justifiable complaints flooded me fast and furiously after those first nudges.
It took an entire day to stop the "nurses" from putting an unwashed urinal bottle on my food table.
By machines, staff or another patient, I was being woken constantly and always either too hot or frigidly cold.
The Charcot foot was back to maximum swelling and pain; this was the probable cause for the toe infection.
I could get answers to no question.
My insulin regiment had been changed, then changed back and the on-duty person clearly did not understand how insulin worked.
Even after constant explanations and instructions at every dose all weekend, the staff could not get the eye drops required post-retina reattachment right; this increased the prednisone that gave me so many other problems.
My blood sugar was being lowered by number management rather than how I felt. This always results , in depression and irritability on biochemical levels.
The final slice to my frayed nerves was the guy down the hall, the one who insisted on drama queen screaming every time the nurses did whatever it was they were doing, any time day or night. His screams were fake, like those of a four year old who screams out for the attention of being potentially hurt rather than because he was hurt.
Maybe my harsh judgment of this other patient was unfair, considering I am both insensitive and have an extremely high pain threshold. But when I called out "Shut up and take it like a man, you wuss!" all the fake cries of "Ouch! Oooh! God damn it, lady!" ceased instantly.
So by the time Dr. Paz interrupted my already cold breakfast on Sunday morning, I was alert to problems because I had seen problems, and of no mind to tolerate further ones....
Monday, May 21, 2012
Sturdy as it Goes
I’m planning in shorter posts that deal with the many elements of my sta at Sturdy Hospital. This seems unfair in a way, but the stresses of the increased Charcot foot problems and the infection have stressed me enough that my eyesight has seemed further diminished. It’s easier on me this way.
I ended up at Sturdy because the retina reattachment was done there. The hospital has a good reputation for trauma care and I saw nothing that contradicts that in the OR or the ER.
The actual hospital care, however, warrants public warnings. Maybe that II was there over a weekend left me with exposure to poorer conditions than would be normal during the regular workweek.
My combination of blindness and foot problems got me labeled as a trip and fall hazard, so I was restricted for the duration. I was allowed away from the bed only with assistance and only when I had to take a dump.
I had to pee in a "portable urinal," the hospital’s name for a wide mouth bottle.
I do not see well enough to know if the roommate in the hospital room kept the curtain between our beds drawn, He had a lot of company an they always sounded nearby and unbuffered. Luckily for me, I’m not the type to worry about such niceties.
I had two issues with the urinal, and both set me in a negative light to the entire stay.
First, only one nurse or assistant rinsed the bottle over the entire 3 ½ day stay, and that was only on one occasion. I asked about this and the nurse asked how I know that if I was blind. I had to point out that I could still hear them empty out, flush, and not rinse..
Even worse, the nurses kept returning the unwashed bottle to the tray table I was expected to eat off of. They did this for the last time on the third morning there, which had also been my last day there. I yelled to the nurse about what she had done with the admonishment appropriate to any moronic three-year-old, "WHAT IS WRONG WITH YOU?"
I ended up at Sturdy because the retina reattachment was done there. The hospital has a good reputation for trauma care and I saw nothing that contradicts that in the OR or the ER.
The actual hospital care, however, warrants public warnings. Maybe that II was there over a weekend left me with exposure to poorer conditions than would be normal during the regular workweek.
My combination of blindness and foot problems got me labeled as a trip and fall hazard, so I was restricted for the duration. I was allowed away from the bed only with assistance and only when I had to take a dump.
I had to pee in a "portable urinal," the hospital’s name for a wide mouth bottle.
I do not see well enough to know if the roommate in the hospital room kept the curtain between our beds drawn, He had a lot of company an they always sounded nearby and unbuffered. Luckily for me, I’m not the type to worry about such niceties.
I had two issues with the urinal, and both set me in a negative light to the entire stay.
First, only one nurse or assistant rinsed the bottle over the entire 3 ½ day stay, and that was only on one occasion. I asked about this and the nurse asked how I know that if I was blind. I had to point out that I could still hear them empty out, flush, and not rinse..
Even worse, the nurses kept returning the unwashed bottle to the tray table I was expected to eat off of. They did this for the last time on the third morning there, which had also been my last day there. I yelled to the nurse about what she had done with the admonishment appropriate to any moronic three-year-old, "WHAT IS WRONG WITH YOU?"
Saturday, May 19, 2012
Charcot Relapse
The prednisone prescribed following the retina reattachment surgery had many bad side effects and a major unknown good one that it reduced about 85% of the Charcot foot swelling. Unfortunately, when I had discontinued the prednisone in hopes of feeling better, the main Charcot symptoms of horrific swelling, elevated foot temperature and old feet odor resurged.
Contrary to statistics on Charcot, I have considerable pain associated with it. Tendon and nerve damage keep things burning and throbbing. Theoretically, Charcot patients are supposed to be some 30 years older than me and have such bad neuropathy that they don’t feel much of anything going on in their feet.
Basically, when the foot swells, circulation that is poor in diabetics to begin with is further reduced. This happened to me despite my attempts to keep the afflicted foot moderately exercised. I have had two disastrous side effects of the swelling.
The first is undeniable bone loss in the ankle. My right leg is visibly shorter than my left and there’s not much expectation that I will ever walk right again. The central bone in my ankle softened, split and rotated; the tibia no longer seats correctly. The heel bone also suffered loss of mass and integrity, mostly in its central area. While the leg is so massively swelled, nutrients cannot reach the center anywhere near as well as they should.
The second result is a constant risk to diabetics but also massively increased risk while the entire leg below the knee was swelled to more than twice its normal size: infection. In a matter of two days, a cut big toe went from being a little red to massively infected with dry gangrene.
I could neither see noir feel the opriblem as it developed, so consider myself very fortunate to have a roommate who has been attentive. The fast moving infection was caught early enough that the infection did not reach the bone. If it had, amputation of the two would have become necessary.
Things are healing well; the stay at Sturdy hospital ended almost two weeks ago, and not without giving me fodder for a few blog posts about what was an almost exclusively unpleasant experience.
Contrary to statistics on Charcot, I have considerable pain associated with it. Tendon and nerve damage keep things burning and throbbing. Theoretically, Charcot patients are supposed to be some 30 years older than me and have such bad neuropathy that they don’t feel much of anything going on in their feet.
Basically, when the foot swells, circulation that is poor in diabetics to begin with is further reduced. This happened to me despite my attempts to keep the afflicted foot moderately exercised. I have had two disastrous side effects of the swelling.
The first is undeniable bone loss in the ankle. My right leg is visibly shorter than my left and there’s not much expectation that I will ever walk right again. The central bone in my ankle softened, split and rotated; the tibia no longer seats correctly. The heel bone also suffered loss of mass and integrity, mostly in its central area. While the leg is so massively swelled, nutrients cannot reach the center anywhere near as well as they should.
The second result is a constant risk to diabetics but also massively increased risk while the entire leg below the knee was swelled to more than twice its normal size: infection. In a matter of two days, a cut big toe went from being a little red to massively infected with dry gangrene.
I could neither see noir feel the opriblem as it developed, so consider myself very fortunate to have a roommate who has been attentive. The fast moving infection was caught early enough that the infection did not reach the bone. If it had, amputation of the two would have become necessary.
Things are healing well; the stay at Sturdy hospital ended almost two weeks ago, and not without giving me fodder for a few blog posts about what was an almost exclusively unpleasant experience.
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 24, 2012
Rocks and Hard Places
I’ve run a gamut of other problems since January’s reattachment surgery. I’ve discussed the cause and effects of the prednisone that I needed to drop in my eye. Prednisone is a steroid that is as much miracle drug as aspirin, and it is the only medication I have ever taken that has given me bad effects.
Discussing the bad effects with the eye doctor who did the surgery and prescribed the prednisone seems to have extended my reputation as a bad patient. That doctor insisted that the side effects I was feeling, particularly the nausea and vomiting of excess stomach acid production, were signs of other diabetic problem. I’m not such a believer in coincidence, given the timing of the problems’ onset. The doctor insisted that the dose was small while ignoring any research I has asked about that cited eye drops as one of the most potent absorption of medication. After two months of discussing this with her, I got allowance to discontinue the medication.
The side effects subsided. I can only wonder what has happened to medical training that every doctor argues with me when I report and effect of some sort of treatment. I simply pay attention to how I feel and what is going on with my body and the timing in which things change and develop. Why does this make me a difficult patient?
My blood pressure plummeted, the nervous tics diminished, vertigo became less of an issue, and my stomach seemed to pump acid back at normal levels, enough that fruit and proteins were not making the tummy erupt. The timing of improvement coincided exactly with the discontinuation of the prednisone, so I can only beat my head against a wall and wonder why every such thing had to be an argument with almost every doctor. I don’t claim to know more or be smarter than the docs. I just pay attention to my body and report what things do to me personally rather than generalized statistics.
My follow up with this good eye doctor is tomorrow, but I have already resumed the prednisone. As it turns out, the steroid–and not times, inactivity following the reattachment surgery, or another factor–caused that sudden recession of swelling in the Charcot foot. Pain and swelling both resumed with a vengeance. It’s worth the ill effects to have the legs slightly more usable.
My eye and foot doctors alike just need to be prepared for a difficult patient if either or both try to tell me that the leg condition is caused by something else entirely and that the timing of stopping and resuming the prednisone is strictly coincidental.
Discussing the bad effects with the eye doctor who did the surgery and prescribed the prednisone seems to have extended my reputation as a bad patient. That doctor insisted that the side effects I was feeling, particularly the nausea and vomiting of excess stomach acid production, were signs of other diabetic problem. I’m not such a believer in coincidence, given the timing of the problems’ onset. The doctor insisted that the dose was small while ignoring any research I has asked about that cited eye drops as one of the most potent absorption of medication. After two months of discussing this with her, I got allowance to discontinue the medication.
The side effects subsided. I can only wonder what has happened to medical training that every doctor argues with me when I report and effect of some sort of treatment. I simply pay attention to how I feel and what is going on with my body and the timing in which things change and develop. Why does this make me a difficult patient?
My blood pressure plummeted, the nervous tics diminished, vertigo became less of an issue, and my stomach seemed to pump acid back at normal levels, enough that fruit and proteins were not making the tummy erupt. The timing of improvement coincided exactly with the discontinuation of the prednisone, so I can only beat my head against a wall and wonder why every such thing had to be an argument with almost every doctor. I don’t claim to know more or be smarter than the docs. I just pay attention to my body and report what things do to me personally rather than generalized statistics.
My follow up with this good eye doctor is tomorrow, but I have already resumed the prednisone. As it turns out, the steroid–and not times, inactivity following the reattachment surgery, or another factor–caused that sudden recession of swelling in the Charcot foot. Pain and swelling both resumed with a vengeance. It’s worth the ill effects to have the legs slightly more usable.
My eye and foot doctors alike just need to be prepared for a difficult patient if either or both try to tell me that the leg condition is caused by something else entirely and that the timing of stopping and resuming the prednisone is strictly coincidental.
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