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.
Monday, April 30, 2012
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.
Tuesday, April 17, 2012
As Seen on TV
A friend told me he had seen an ad or feature on local TV for Koch Eye Associates. Dr. Koch himself appeared with a young female lawyer who had already had twenty-two sessions of PRP (Pan retinal photocoagulation). I had a total of six sessions.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
Saturday, April 14, 2012
Paying Attention
One of the most frequent questions I have been asked in the two and a half years the vitreous hemorrhage kicked off this experience of going blind: "Have your other senses gotten better?"
The answer is no. I have not become Marvel Comics’ Daredevil with extraordinary abilities of smell or hearing or touch.
While by no means a severe case, as a diabetic of nearly 40 years, I do have some neuropathy, which is pretty much inevitable. My tactile senses have slightly diminished over time, and I am not sure that my fingers retain enough acute sensitivity for me to even learn braille.
My roommate thinks my sense of smell if better, but am pretty sure it is more of a matter of comparison and that his sense of smell is not good, in part because he is not one to pay overmuch attention to his surroundings. Someone in this urban neighborhood has been burning wood throughout the winter. The roommate has not been able to sense that while it often triggered my sinuses throughout this past winter. I can smell the beginnings of mold on bread, but I also specifically sniff for it. He will deny any off odor; I will usually leave that bread for him and he will throw it out to the birds without comment in a day or so.
I have not explored the sense of taste as compensation for the diminished sight. In a house full of moldy bread and kitty litter boxes, this does not seem very practical.
Hearing most of all requires paying attention. I am lucky that I have always been very good with voices, which was perhaps compensation for the fact that I was never very good with faces. I got a job once years ago by my voice recognition: as I walked through the door following an interview I answered the ringing phone and recognized the voice of the interviewer as she asked for someone else after accidentally calling that person in my number. The ability worked well with taking the visual cues I can discern un identifying who I am talking to. I work with what I have left, as best as I can.
Heating, however, is reliant on being free of distraction. When bowling, I can often–but not unerringly–tell how many pins I hit when shooting for a spare by listening for the collision. If there are other nearby rolls, this obviously does not work so well.
In loud or clamourous settings, I often don’t hear when being spoken to directly.
\Nor can I eavesdrop with any certainty. I typically don’t have the motivation. If I want to know something badly enough, I typically have the tactlessness to ask on point.
The answer is no. I have not become Marvel Comics’ Daredevil with extraordinary abilities of smell or hearing or touch.
While by no means a severe case, as a diabetic of nearly 40 years, I do have some neuropathy, which is pretty much inevitable. My tactile senses have slightly diminished over time, and I am not sure that my fingers retain enough acute sensitivity for me to even learn braille.
My roommate thinks my sense of smell if better, but am pretty sure it is more of a matter of comparison and that his sense of smell is not good, in part because he is not one to pay overmuch attention to his surroundings. Someone in this urban neighborhood has been burning wood throughout the winter. The roommate has not been able to sense that while it often triggered my sinuses throughout this past winter. I can smell the beginnings of mold on bread, but I also specifically sniff for it. He will deny any off odor; I will usually leave that bread for him and he will throw it out to the birds without comment in a day or so.
I have not explored the sense of taste as compensation for the diminished sight. In a house full of moldy bread and kitty litter boxes, this does not seem very practical.
Hearing most of all requires paying attention. I am lucky that I have always been very good with voices, which was perhaps compensation for the fact that I was never very good with faces. I got a job once years ago by my voice recognition: as I walked through the door following an interview I answered the ringing phone and recognized the voice of the interviewer as she asked for someone else after accidentally calling that person in my number. The ability worked well with taking the visual cues I can discern un identifying who I am talking to. I work with what I have left, as best as I can.
Heating, however, is reliant on being free of distraction. When bowling, I can often–but not unerringly–tell how many pins I hit when shooting for a spare by listening for the collision. If there are other nearby rolls, this obviously does not work so well.
In loud or clamourous settings, I often don’t hear when being spoken to directly.
\Nor can I eavesdrop with any certainty. I typically don’t have the motivation. If I want to know something badly enough, I typically have the tactlessness to ask on point.
Friday, April 6, 2012
Getting the Boot
The Charcot foot is now in Stage Two.
Essentially, this means that most of the abnormal swelling is down and that it is in a period where it should, could, or might rehabilitate and restrengthen from reduced use. As no imaging showed any broken bones in my case, I did not keep it as absolutely rested and normally recommended, specifically to keep the leg and foot from completely atrophying on me.
I am aware that my legs, like my eyes, will never be what they were.
The Charcot foot had effects that no doctor warned me about. Maybe some of these things were coincidence in timing, but I am much too paranoid to be a big believer in coincidence.
My blood pressure skyrocketed at the same time the swelling developed. It has receded with the swelling, but not yet back down to prior levels, even with medication.
The prednisone that I have been eye dropping can also raise blood pressure, so that may be a futile battle at this point. My cynical worry is that the Lisinopril will turn what would be a sudden and fatal heart attack into something that will allow me to live with further debilitation.
The atrophy I had sought to prevent happened anyway. The foot and leg is used less during Stage One, and the swelling restricts nutrient flow, which can result in bone and tissue loss. The outcome for me is that the afflicted ankle collapsed. My right leg is now somewhat shorter than my left leg. I feel lopsided orientation when standing or walking. This has already put strain on left leg and has the potential to screw up my back.
Combined with blindness, I’m really disabled now. It’s screwed up my bowling as I tend not to stand straight or square and can’t see that my straight-throw alignment to the pins is off. Talking about this point is probably more leaning to bitchfest rather than informing about Charcot foot, so ‘nuff said.
Dry flaky skin over what was so massively swollen remains. I promise not to pass around another small sheet of dead skin to my bowling partners to show as "something cool" and identifying it only after they’ve been handling it. Maybe with the next larger piece, I will rehydrate it and feed it to the cats.
Like the ill advised PRP treatment that would prevent diabetic retinapathy, the Charcot foot will have permanent effects beyond my mismatched leg lengths. I’ve been prescribed and fitted for a leg brace, what the dumbass foot doctor said would be supportive but what the caster at the orthopedic appliance place said would be largely immobilizing. It’ll take a few weeks to get in; and until then, it’s like the long term prognosis on the reattachment surgery: wait and see, as best as I can.
Essentially, this means that most of the abnormal swelling is down and that it is in a period where it should, could, or might rehabilitate and restrengthen from reduced use. As no imaging showed any broken bones in my case, I did not keep it as absolutely rested and normally recommended, specifically to keep the leg and foot from completely atrophying on me.
I am aware that my legs, like my eyes, will never be what they were.
The Charcot foot had effects that no doctor warned me about. Maybe some of these things were coincidence in timing, but I am much too paranoid to be a big believer in coincidence.
My blood pressure skyrocketed at the same time the swelling developed. It has receded with the swelling, but not yet back down to prior levels, even with medication.
The prednisone that I have been eye dropping can also raise blood pressure, so that may be a futile battle at this point. My cynical worry is that the Lisinopril will turn what would be a sudden and fatal heart attack into something that will allow me to live with further debilitation.
The atrophy I had sought to prevent happened anyway. The foot and leg is used less during Stage One, and the swelling restricts nutrient flow, which can result in bone and tissue loss. The outcome for me is that the afflicted ankle collapsed. My right leg is now somewhat shorter than my left leg. I feel lopsided orientation when standing or walking. This has already put strain on left leg and has the potential to screw up my back.
Combined with blindness, I’m really disabled now. It’s screwed up my bowling as I tend not to stand straight or square and can’t see that my straight-throw alignment to the pins is off. Talking about this point is probably more leaning to bitchfest rather than informing about Charcot foot, so ‘nuff said.
Dry flaky skin over what was so massively swollen remains. I promise not to pass around another small sheet of dead skin to my bowling partners to show as "something cool" and identifying it only after they’ve been handling it. Maybe with the next larger piece, I will rehydrate it and feed it to the cats.
Like the ill advised PRP treatment that would prevent diabetic retinapathy, the Charcot foot will have permanent effects beyond my mismatched leg lengths. I’ve been prescribed and fitted for a leg brace, what the dumbass foot doctor said would be supportive but what the caster at the orthopedic appliance place said would be largely immobilizing. It’ll take a few weeks to get in; and until then, it’s like the long term prognosis on the reattachment surgery: wait and see, as best as I can.
Thursday, April 5, 2012
Perseverance
The decline in eyesight this academic year fell fast. The Charcot foot diminished me more, and neither thing will ever be fully healed. I’m coming to terms with that, bit by bit. Instead of being a blind guy who walks with arms extended before me to catch a fall or buffer a bump, I also typically drag one leg a bit. I imagine I look like the staple lab assistant of horror movies.
The lack of posts over the past month has not been a lack of interest ion the blog, but dwindled ability. Everything I do takes more out of me than it should, and other responsibilities absorb time that always seems overly extended. Anything also had the potential of frustrating me to temporary retreat from trying to do things for myself.
Computer use has diminished since the January reattachment procedure. Eyestrain comes quickly; headaches usually follow. Proofreading is more difficult than ever. I can’t really see whole words as cohesive units. The serifs of "r" and "t" make the letters close twins to me, and I have great difficulty finding an "I" that inserted itself via typo when striking an "o" or "u."
I still strive for an active life, but find it prudent and ultimately more responsible to reduce commitments. I wrote out notice to my bowling league to solicit replacement for myself as league secretary for next season. Earlier this year I resigned from the community board I had served on for a number of years. I took pride and satisfaction in those things and other activities that lent social outlet to someone who worked alone rather than in group settings for the past ten-plus years.
I’m hoping that in doing less I will ultimately be able to do more, including things back burnered for far too long.
The lack of posts over the past month has not been a lack of interest ion the blog, but dwindled ability. Everything I do takes more out of me than it should, and other responsibilities absorb time that always seems overly extended. Anything also had the potential of frustrating me to temporary retreat from trying to do things for myself.
Computer use has diminished since the January reattachment procedure. Eyestrain comes quickly; headaches usually follow. Proofreading is more difficult than ever. I can’t really see whole words as cohesive units. The serifs of "r" and "t" make the letters close twins to me, and I have great difficulty finding an "I" that inserted itself via typo when striking an "o" or "u."
I still strive for an active life, but find it prudent and ultimately more responsible to reduce commitments. I wrote out notice to my bowling league to solicit replacement for myself as league secretary for next season. Earlier this year I resigned from the community board I had served on for a number of years. I took pride and satisfaction in those things and other activities that lent social outlet to someone who worked alone rather than in group settings for the past ten-plus years.
I’m hoping that in doing less I will ultimately be able to do more, including things back burnered for far too long.
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