Just realized I have macular degeneration...and am feeling distressed. (recovery, surgeon)
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
Ruling out a retinal detachment or head injury is a waste of your time? Now I understand why you haven't taken my advice to see an eye doctor over the weekend; you think ruling out your own retinal detachment would also be a waste of your time. If your doctor is too busy to see you, don't take no for an answer, see another one. I'm amazed at how passive people are about their health. "My doctor says they can't see me for a month, so I'll just wait." I don't think so. If I have an urgent problem, I camp out on my doctor's doorstep. They can't ignore me then; either they see me or they will send me to someone who will.
They didn’t rule out a retinal detachment. They didn’t even examine his eyes. There was absolutely no reason to suspect a head injury. They completely over/under reacted and wasted our time.
I am not passive about my health. By waiting until this morning, I was following my optometrist’s advice. It turns out she was right. I saw her this morning and she said that I have a macular hole and that the situation is urgent, not emergent. I will post more about it later.
Panicking, freaking out and “seeing a doctor immediately” about everything little health thing is also not a great way to live.
They didn’t rule out a retinal detachment. They didn’t even examine his eyes. There was absolutely no reason to suspect a head injury. They completely over/under reacted and wasted our time.
I am not passive about my health. By waiting until this morning, I was following my optometrist’s advice. It turns out she was right. I saw her this morning and she said that I have a macular hole and that the situation is urgent, not emergent. I will post more about it later.
Panicking, freaking out and “seeing a doctor immediately” about everything little health thing is also not a great way to live.
It turns out I have a recently developed “full thickness macular hole” in my retina. My optometrist referred me immediately to an ophthalmologist and literally 20 minutes later I was in the ophthalmologist’s waiting room. I was really happy about that. (When I was losing my hearing five years ago it took me months to get in to see a specialist.)
The ophthalmologist, a retinal surgeon, told me that surgery was my best bet and that I was in an urgent, but not emergent situation. It would be best if I had the surgery within about two months.
So, that is the good. The not-so-good is that the surgery has risks (retinal detachment/tear) and side effects (accelerated cataract formation). Also, the recovery period will be difficult. I will have to spend over 75% of my waking hours being still and lying face down for about a week, then gradually reincorporate activities after that.
Another piece of not-so-great news is that I am at high risk of developing a macular hole in the other eye. There is absolutely nothing I can do to prevent this. It is all genetics and luck.
It turns out I have a recently developed “full thickness macular hole” in my retina. My optometrist referred me immediately to an ophthalmologist and literally 20 minutes later I was in the ophthalmologist’s waiting room. I was really happy about that. (When I was losing my hearing five years ago it took me months to get in to see a specialist.)
The ophthalmologist, a retinal surgeon, told me that surgery was my best bet and that I was in an urgent, but not emergent situation. It would be best if I had the surgery within about two months.
So, that is the good. The not-so-good is that the surgery has risks (retinal detachment/tear) and side effects (accelerated cataract formation). Also, the recovery period will be difficult. I will have to spend over 75% of my waking hours being still and lying face down for about a week, then gradually reincorporate activities after that.
Another piece of not-so-great news is that I am at high risk of developing a macular hole in the other eye. There is absolutely nothing I can do to prevent this. It is all genetics and luck.
I'm glad you could quickly get to an ophlalmologist and get a treatment plan. At least if you know what you're at risk for you can be on the lookout for whatever signs might be associated.
I'm glad you could quickly get to an ophlalmologist and get a treatment plan. At least if you know what you're at risk for you can be on the lookout for whatever signs might be associated.
Just today I realized for the first time that I almost certainly have macular degeneration in my right eye (a yellowish “floater” that doesn’t float down & a nearby blurry area — both smack dab in the center of my field of view. When I look only out of my right eye, straight lines appear bent, then broken at the blurry area, so, for example, street light poles look like two poles stacked vertically with the top “pole” floating above the bottom “pole.” I could go on, but long story short, I have 5 of the 6 symptoms of macular degeneration and no symptoms of other eye disorders (except my severe myopia).
I made an appointment with my eye doctor right away — first thing Tuesday morning. I spoke with her on the phone and she agreed that it sounded like macular degeneration and not, say, a retinal detachment. (She had me do some eye tests on myself over the phone).
So .. here I am feeling really kind of depressed about this. From what I have read there is no real treatment or cure. There is a recommended supplement (based on actual research which I read), so I ordered that. But it only seems to have any effect at all in just 20% of people who try it.
I am only 56. I feel so young to be losing my vision, well, at least the part of it I care about — being able to read, drive, recognize faces.
I am also so frustrated as to why I have had so many health problems over the past 10 years in spite of being proactive about having a healthy life style, having a relatively low-stress life, and supposedly having good genes (no one else in my family has so many problems so young).
In the past 10 years, I have had:
Recurrent diverticulitis (had surgery for this)
Recurrent UTIs (am very careful now/take supplements)
Onset of Autoimmune Inner Ear Disease (went legally deaf in one ear in 3 months and am now hearing impaired in my other ear)
Onset of idiopathic chronic pancreatitis (although I don’t drink).
Increasingly frequent episodes of cardiac arrhythmia (although it seems like I have found a fix for this)
Stage IIIb squamous cell lung cancer (although I have never smoked or lived with a smoker).
And now I am starting to lose my sight too.
Sigh, just sigh. So depressed ... Well, at least, if I die of lung cancer, I won’t have to worry about going both blind and deaf (or deafer than I am now).
Anyone else suffer from macular degeneration? I am guessing not, since anyone who has it bad probably wouldn’t be able to post to this forum ...
/end pity party
Yikes, that is some list, with of course the lung cancer being the worst.
As to your DMD, yes at this moment there is no cure, however there are clinical studies underway, some of which hold some promise.
I don't know what state you live in, but the best doctor treating MD in America is in Miami Florida, at the Bascom Palmer Eye Institute
Yikes, that is some list, with of course the lung cancer being the worst.
As to your DMD, yes at this moment there is no cure, however there are clinical studies underway, some of which hold some promise.
I don't know what state you live in, but the best doctor treating MD in America is in Miami Florida, at the Bascom Palmer Eye Institute
People fly in from all over the country and world to go there and be evaluated/treated.
Good luck.
`
Thanks. I found out yesterday it is a macular hole, which can be repaired via surgery. However, I am just about to head back to the ophthalmologist’s right now because there is a new development with my right eye — lots of new floaters. I’m going to miss the inauguration. Waaa!!
My eye doctor recommended Systane lubricating eye drops and Preservision tablets twice daily. My MD doesn't seem to have worsened since first diagnosed. My best.
My 91 year old mom gets injections into her eyeball every other month. That is why I religiously follow my doctor’s advice.
I have a client who gets the shots and he survived it. Big sissy. lol
Quote:
Originally Posted by blisterpeanuts
My mom (also in her 90s like the above poster's) likewise gets injections that turned around her M.D. in one eye to the point where she could read again.
She also got cochlear implants, as have several other people I know, which enabled her to hear much better.
I'm sorry you've had so many health problems; you were dealt a bad hand, it sounds like. I hope that your doc gives you good news, but in any case, at least we live in an era when there are real treatments, and more in the pipeline. Best of luck.
Very positive post.
Quote:
Originally Posted by Jill_Schramm
Well, it is 100% clear there is something wrong with my vision. In itself that is enough catastrophe for me. I went through my whole cancer diagnosis and staging process last year trying to be positive, then suffering all over again when the news again came back worse than expected. Maybe it’s time to catastrophize now, then rejoice on Tuesday when I hear the good news (but see below). It is much easier thinking of some concrete possible outcome than resting in ambiguity.
Also, with my hearing loss, I had the opposite experience of your stubborn acquaintance who went blind. I had ENTs reassuringly misdiagnose me with a much less severe illness and it is almost entirely to this confusion and false reassurance that I wound up losing a large part of my hearing (through delays in realizing I actually needed treatment, then actually getting to see a specialist who really knew what they were doing.)
So, even if I hear on Tuesday that it is nothing serious, I will still be seeking other opinions.
Sounds like you have learned or are learning how to deal with these setbacks. Good for you. I'm sort of like you, expect the worst and anything less is gravy. lol
I appreciated the positive, non judgemental posts on this thread. I think they go way further in trying to help with the situation. I also have never heard of a "macular hole" but it sure sounds like a retinal tear. My dear sil had one of those with exact same surgery advice and recovery treatment. Her's didn't repair though.
Good luck to you and you have my sincerest best wishes for a good outcome. It sounds like you are due for one.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
