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RP & Stroke
My husband, almost 60, was diagnosed 15+ years ago with RP, then 5 years ago with Glaucoma. Recently, he experienced a mild stroke, will virtually no loss of motor skills, speech or comprehension. But I noticed right away that his vision had changed substantially. Unfortunately, the medical community does not seem prepared to address the vision loss in any way at all. In fact, they seem to simply shrug it off -- he was already blind before the stroke, so that didn't cause it. Well DUH... but is there ANY hope of recovery for the vision loss? Could the neuro pathways affected recover like they do for motor or speech? Is there no stroke rehab for this area? His eye care has been excellent, but ultimately all they can do is measure the losses. What questions might motivate his stroke doctor to learn more? We are blessed that he's home with so little difficulty, but the new (and extreme) double vision is enormously frustrating for him. I can't just do nothing, but I don't know where to turn. Thank you.
A related discussion, EYE PAIN AFTER STROKE was started.
Thank you for your comment, NancyT. Apparently it's not just physicians who make this site so valuable. The resonnance I felt reading about your situation helped me feel connected, that I am not the only resident in this crazy State. That means so much to me. Stick with it and keep finding ways to deal with all the unknowns. Bless you.
Shippie, I can really understand the deep-seated need to have a doctor just TALK STRAIGHT to you and directly address your questions or concerns. I have had odd undiagnosed symptoms for several years (once having a neurologist tell me I had MS). I came to realize that doctors don't have all the answers and that sometimes they have done all they can for you. But what the patient needs in that case is a straight assessment, an open discussion, of where you're at and where you go from here.
I can accept uncertainty, I can accept "you just have to live with it," I can accept the possibility that I have a serious disease or that I DON'T have a serious disease. What I can't accept is being made to feel like I'm just anxious or bothersome for asking questions because I want straightforward INFORMATION or OPINION, as opposed to patronizing lectures, pats on the back, evasion, ambiguity, unexplained flip-flops, or avoiding answering the question that I actually asked or avoiding discussing symptoms directly.
You want to know, what should I do now? And you need straightforward information or opinions to help you make that decision, instead of being left HANGING, on your own. I am sure most doctors have the best intentions and are trying to do their best by their patients with very limited time, but it's excruciating to feel that you can't talk to your doctor without fear of being brushed off, when a few straightforward comments or advice can go such a long way toward letting you go home feeling settled, relieved, and confident on going forward.
The doctor on this forum is doing a wonderful job of providing information; I have learned so much from reading here. I wish all doctors would be so forthcoming!
Best of luck to you and your husband,
Nancy T.
I can accept uncertainty, I can accept "you just have to live with it," I can accept the possibility that I have a serious disease or that I DON'T have a serious disease. What I can't accept is being made to feel like I'm just anxious or bothersome for asking questions because I want straightforward INFORMATION or OPINION, as opposed to patronizing lectures, pats on the back, evasion, ambiguity, unexplained flip-flops, or avoiding answering the question that I actually asked or avoiding discussing symptoms directly.
You want to know, what should I do now? And you need straightforward information or opinions to help you make that decision, instead of being left HANGING, on your own. I am sure most doctors have the best intentions and are trying to do their best by their patients with very limited time, but it's excruciating to feel that you can't talk to your doctor without fear of being brushed off, when a few straightforward comments or advice can go such a long way toward letting you go home feeling settled, relieved, and confident on going forward.
The doctor on this forum is doing a wonderful job of providing information; I have learned so much from reading here. I wish all doctors would be so forthcoming!
Best of luck to you and your husband,
Nancy T.
THANK YOU! I can't say that enough. All I have wanted during this difficult time is for one physician to give us a straight answer that addresses the visual problems Gil is experiencing. Okay, the information is tough -- but can you understand how much easier it is to hear a clear-cut reply instead of a evasion? Do I "judge too harshly" when all I expect is a dose of reality, yet all I get is vagueness and equivocation? To be sure ... pony rides aren't all adventures in May sunshine, but we've only asked for a weather report before we mount up.
Now your answer is straight and to the point; and I appreciate deeply your kindness to share those thoughts with me. I'm my husband's guide in this, and you've let me know where the trees are. Am I going to whack him with a hard heart and this new-found insight? Not on your life. But I will lead him through the maze till he arrives at his own understanding.
Yes, I realize his coping skills will "make up" some of the difference between last week and this one, and that it will take time to achieve that new equilibrium. And I will be there to celebrate every accomplishment along the way. I suggested to him that the map in his head is just crumpled for now and he understood. If I understand your advice, the path is only straight ahead with no shortcuts. So we'll go that way. Thank you again, for your honesty and for not treating us like children.
Now your answer is straight and to the point; and I appreciate deeply your kindness to share those thoughts with me. I'm my husband's guide in this, and you've let me know where the trees are. Am I going to whack him with a hard heart and this new-found insight? Not on your life. But I will lead him through the maze till he arrives at his own understanding.
Yes, I realize his coping skills will "make up" some of the difference between last week and this one, and that it will take time to achieve that new equilibrium. And I will be there to celebrate every accomplishment along the way. I suggested to him that the map in his head is just crumpled for now and he understood. If I understand your advice, the path is only straight ahead with no shortcuts. So we'll go that way. Thank you again, for your honesty and for not treating us like children.
MEDICAL PROFESSIONAL
Hello Shippie2 There is a big difference between 'shrugging off' something that can be fixed and physicians having to deal with something that can't be fixed. Medicine would be a great job if we had an answer and a cure for all that ails mankind. Such will never be our lot in this life. However we can and obviously are doing more each year.
To be frank there is no technique for restoring vision loss after a stroke. Most such vision loss is bilateral, affecting both eyes and tends to involve the peripheral vision more than the central vision. There may be some improvement spontaneously over the 4 to 6 month period following a stroke but it is usually precious little when accurately measured. Most 'improvement' comes from adaptation and adjustment on the part of the patient.
In this forum I have discussed a technique touted to improve peripheral vision loss after a stroke or tumor that uses visual training to try and recruit uninjured parts of the brain to take over the function of the damaged areas. The technique is time consuming, very expensive, only available at a few centers, and many highly respected neuro-ophthalmologists believe the value of the procedure is somewhere between no help at all to unproven to help. I do not refer my patients for this treatment. I do have them see occupational therapy which most find helpful.
When you superimpose stroke damage on glaucoma damage on longstanding retinitis pigmentosa, odds are there is virtually no normal tissue left in the eye and most people with these three problems would be virtually and functionally blind. Given these facts I think you likely judge your husbands physicians too harshly.
There are always things that happen that cannot be explained by what 'usually happens'. In my long history in clinical medicine I had a physician's mother that lost half her peripheral vision due to a stroke. She totally recovered without any treatment on my part over 4 months.
I regret that I cannot offer you more hope, perhaps I have given you more of an understanding of your husbands likely insurmountable visual problems.
JCH MD Eye physician & Surgeon Eye MD
To be frank there is no technique for restoring vision loss after a stroke. Most such vision loss is bilateral, affecting both eyes and tends to involve the peripheral vision more than the central vision. There may be some improvement spontaneously over the 4 to 6 month period following a stroke but it is usually precious little when accurately measured. Most 'improvement' comes from adaptation and adjustment on the part of the patient.
In this forum I have discussed a technique touted to improve peripheral vision loss after a stroke or tumor that uses visual training to try and recruit uninjured parts of the brain to take over the function of the damaged areas. The technique is time consuming, very expensive, only available at a few centers, and many highly respected neuro-ophthalmologists believe the value of the procedure is somewhere between no help at all to unproven to help. I do not refer my patients for this treatment. I do have them see occupational therapy which most find helpful.
When you superimpose stroke damage on glaucoma damage on longstanding retinitis pigmentosa, odds are there is virtually no normal tissue left in the eye and most people with these three problems would be virtually and functionally blind. Given these facts I think you likely judge your husbands physicians too harshly.
There are always things that happen that cannot be explained by what 'usually happens'. In my long history in clinical medicine I had a physician's mother that lost half her peripheral vision due to a stroke. She totally recovered without any treatment on my part over 4 months.
I regret that I cannot offer you more hope, perhaps I have given you more of an understanding of your husbands likely insurmountable visual problems.
JCH MD Eye physician & Surgeon Eye MD
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