Jump to content

Macular Degeneration


imagooddog
This topic is 3761 days old and is no longer open for new replies.  Replies are automatically disabled after two years of inactivity.  Please create a new topic instead of posting here.  

Recommended Posts

Had an eye doctor appointment yesterday and found that I have the beginning (he thinks) of macular degeneration in my left eye.

I have an appt. with a retina specialist on Monday to find out more. Of course this if very depressing (my dad lost all vision in both

eyes from this disease). It affects one's ability to read, watch tv or movies, drive, etc. Have any of you experience with this? Is it

likely to eventually affect both eyes? I am a much older guy, stay home a lot, and read books constantly. Not ready for such a

change. Any information will be greatly appreciated. I am very depressed right now.

Link to comment
Share on other sites

  • Replies 27
  • Created
  • Last Reply

See several retina specialists. There are several kinds of macular degeneration and you want to know what type you have. Also find out if there are any clinical studies going on - even if you have to go to another city. A friend was enrolled in one study a few years ago and the progression of the disease was slowed considerably.

 

Good luck!

Link to comment
Share on other sites

Imagooddog, I am so sorry you heard this news. I agree that clinical trials are the way to go. The trick is to find the top experts in this area and go to a trial run by one of them. Here is a list of all trials across the country:

 

http://www.centerwatch.com/clinical-trials/listings/condition/96/macular-degeneration

 

Does anyone here who know who the top clinical researchers in this area are?

Link to comment
Share on other sites

I understand your depression and sympathize with you. My mother had macular degeneration, which apparently has some genetic basis, because her sister, brother and first cousin all developed it as well. As funguy says, there is more than one type, and it develops at different times and at different rates in individuals. In addition to new treatments, there are also technologies which may help one deal with the effects. My mother was first diagnosed in her early 70s, but she was still able to read, with difficulty, into her early 90s, and her cousin had a device that enabled her to read and do some other visual activities until she was almost 100.

 

Like so much else that goes with ageing, once one accepts adapting to the inevitable changes, the depression becomes somewhat easier to deal with, even though one never welcomes the loss of one's youthful abilities.

Link to comment
Share on other sites

Had an eye doctor appointment yesterday and found that I have the beginning (he thinks) of macular degeneration in my left eye. I have an appt. with a retina specialist on Monday to find out more. Of course this if very depressing (my dad lost all vision in both eyes from this disease). It affects one's ability to read' date=' watch tv or movies, drive, etc. Have any of you experience with this? Is it likely to eventually affect both eyes? I am a much older guy, stay home a lot, and read books constantly. Not ready for such a change. Any information will be greatly appreciated. I am very depressed right now.[/quote']

 

I completely understand how you feel because I have been told by eye doctors that I have significant eye problems as well. In each case, they were wrong. Luckily, the top specialist in the area believed the original diagnoses were wrong from the beginning. But, I still had to go through multiple eye tests, with the last one scheduled for this Thursday. And I expect to fail the visual field test, as I have twice before.

 

My advice: Take it one step at a time (easier said that done, I know). So far one doctor "thinks" you may have the beginnings of macular degeneration. It's far, far too early to be thinking about clinical trial studies. You will know more after the appointment with the retina specialist on Monday. I also highly recommend 2nd and 3rd opinions.

 

Since your dad had macular degeneration, it is natural to be very concerned. Please let us know how you are doing in the next few days, after you receive an opinion from the retina specialist.

Link to comment
Share on other sites

My dad had macular degeneration and I was his primary (and only caretaker) for many years. It was amazing how he adapted to the situation. I don't mean to make light of the situation, but for years even though he was "legally blind" I was unable to pull the wool over his eyes! Never! EVER! It was amazing how he was able to navigate in restaurants and supermarkets. Once he knew the lay of the land there was no stopping him. Of course in a restaurant someone had to read the menu for him and in a supermarket he had to ask for help when he got to the aisle in question. Of course reading was out of the question and eventually TV was difficult for him as well. However one learns to compensate for ones deficiencies and many times he would be able to see a speck of dirt on the rug the eluded me if I were not wearing my glasses... Incidentally, he did have a device to help him read that was probably similar to what Charlie is referencing. However he found it difficult to use. I understand that what is available to day is more streamlined and less cumbersome.

 

Funguy and WilliamM have given you good advice. See more than one specialist and get more than one opinion... Plus there are indeed different types. My dad had one eye that had the wet version while the other eye had the dry type. There are many newer treatments out there now that were not available to my dad. I know because two of his sisters are dealing with the condition and they are doing reasonable well and the approach taken is quite different compared to what had be done for my dad. In fact the older of the two who is 95 is actually doing better than her 80 year old younger sibling.

 

So the bottom line is to try and think positively because as funguy has noted the progression of the disease can more easily be arrested compared to even a few short years ago. As for myself, given the family history I have been trying to prepare myself for the eventuality. Wishing you all the best...

Link to comment
Share on other sites

Please do everything in your power to learn to adapt like Charlie's and whipped guy's relatives.

 

My grandmother has Macular Degeneration. She refused and continues to refuse to adapt. She would rather spout off a list of everything she can't do, rather than learning to do adapt or finding new things she might enjoy.

 

Please don't let this happen to you. As the condition progresses (if indeed you have it), seek the help of low vision specialists or mental health professionals if necessary to help you cope.

Link to comment
Share on other sites

I was diagnosed with AMD (age-related macular degeneration) about 9 years ago. I am now 51. AMD can be very slow moving, but everyone is different. There was a slight change in my left eye last year, but the worst problem I have is very small print. And I compensate for that with either a bright light or a magnifying glass. It is inherited. What's funny is my mom wasn't diagnosed until a few years after I was and she was in her 70s. Read up on it. There's lots of info out there. Go to AMD.org and request a free magnetic Amsler grid and put it on the refrigerator. Checking your vision on that every week or two is how you can monitor your own status. You could go years without it ever changing very much. Just because your dad went blind from it doesn't mean you will. Wear sunglasses. Do not expose yourself to tobacco smoke. The retina specialist will recommend a vitamin formula for you, probably an AREDS formula. If he doesn't, ask him about it. Anything could help. Best wishes!

Link to comment
Share on other sites

Well, I had an appointment with a retina specialist yesterday and have macular degeneration in both eyes but the left eye need immediate attention.

I have the "dry" kind, and am having surgery at the University Medical Center on Friday AM with the hope of preventing it from getting worse. The right

eye they will just keep monitoring the progression.

Link to comment
Share on other sites

Hey:

 

Regarding your macular issues; it sounds like you are on the right track. Like everyone is saying, stay close to a Retina specialist who has a large practice in macular degeneration. There are trials occuring around the country using Procit, or other type of epogen medications, that they enject into your eye. Procrit is a drug used for anemia. The therory is that just as the Procit creates more blood it possibly could increase blood flow in your eye. The trial has been going on for years. I understand that so far, it is has been considered successful. In general it seems to halt the degeneration. In a few cases it has improved vision.

 

Being depressed is truly understandable. But please, face this set-back head on. It sounds like you are. I hope the surgery is a total success. Understand that you have lots of family and friends who will support you. As well, you have caring and well meaning people on this forum who support you. We are behind you. With best wishes.

Link to comment
Share on other sites

The study my friend was in was with Procrit and it worked wonders. He a very young 80 (76 at the timehe enrolled in the study) and there has been very little progression of the disease. His daughter was just diagnosed (in another state) and his doctor is getting her enrolled in another study.

The moral of the story...start off with the best you can find in the field and continue to look if your doc doesn't talk about the LATEST work going on.

 

GOOD LUCK and keep a smile on your face....you have a lot of people who don't even know you who are pulling for you. Let us all know how you are doing and what works for you.

 

Funguy

Link to comment
Share on other sites

Surgery for dry macular degeneration to prevent deterioration sound exceedingly odd' date=' this needs a lot of detailed explanation as this is not standard of care and as such sounds experimental and in addition on the surface, does not seem to have any scientific rationale behind it.[/quote']

 

The surgery is scheduled for Friday -- two days from now. I hope you have also sent him a PM with much more detailed information, including your background and experience.

Link to comment
Share on other sites

My mother, who is in her nineties, suffers from the affliction of macular degeneration. After consulting numerous specialists, she determined to take the stem-cell "cure" which was, at the time, available in Germany. Although she was discouraged by every opthamologist she had consulted, the results were nothing less than miraculous.

Link to comment
Share on other sites

Well, I had an appointment with a retina specialist yesterday and have macular degeneration in both eyes but the left eye need immediate attention.

I have the "dry" kind, and am having surgery at the University Medical Center on Friday AM with the hope of preventing it from getting worse. The right

eye they will just keep monitoring the progression.

The BEST NEWS is the doctors at a teaching hospital would not take you through the surgery unless they believed that the trauma of the surgery would pay off in halting and possibly improving your particular circumstances. And there are several DEEP SOUTH teaching hospitals I'd attend - they are EXCELLENT.
Link to comment
Share on other sites

Surgery for dry macular degeneration to prevent deterioration sound exceedingly odd, this needs a lot of detailed explanation as this is not standard of care and as such sounds experimental and in addition on the surface, does not seem to have any scientific rationale behind it.
You seem authoritative on the subject. I'd like to know your credentials to back up what you're saying here. No offense intended.

 

However, I believe questioning from afar a doctor's diagnosis and treatment plan when you haven't attended the patient cannot be a good thing. Do you know the doctor's experience and track record? Do you know enough about the patient's diagnosis to render this oddity determination?

 

Let us all be positive and supportive for imagooddog's decision treatment and future. He's consulted a physician at a major medical teaching hospital. He's agreeing to the treatment. Disparaging his decision by calling it odd, failing the standard of care and scientifically irrational on an anonymous blog isn't supportive of him in my mind. It can only cause doubts.

 

Faith in your medical practitioner's guidance is a major part of any rationale for undergoing treatment. I wouldn't let your questioning bamboozle me.

Link to comment
Share on other sites

I am amazed and so thankful for all the replies to this topic. I feel, even though I do not know any of you, that I have friends here. Thank you SO much.

I know I am not alone. I am no long depressed over this situation as I as in the beginning. My doctor is a Dr. Chen at the University Medical Center in

Jackson Mississippi and he has a reputation of being one of the best in the nation. His waiting room on Monday must have had about 35 people in it

at 3PM when I went, many from other states. I am suppose to sleep on my stomach for 2 weeks and that is going to be a challenge, as I am a side

sleeper. But whatever it takes !! Thanks again to all of you for showing concern. One sometimes has friends that they do not even know about.

Link to comment
Share on other sites

I am amazed and so thankful for all the replies to this topic. I feel, even though I do not know any of you, that I have friends here. Thank you SO much.

I know I am not alone. I am no long depressed over this situation as I as in the beginning. My doctor is a Dr. Chen at the University Medical Center in

Jackson Mississippi and he has a reputation of being one of the best in the nation. His waiting room on Monday must have had about 35 people in it

at 3PM when I went, many from other states. I am suppose to sleep on my stomach for 2 weeks and that is going to be a challenge, as I am a side

sleeper. But whatever it takes !! Thanks again to all of you for showing concern. One sometimes has friends that they do not even know about.

 

All the best luck….we expect a follow-up!

 

Funguy

Link to comment
Share on other sites

You seem authoritative on the subject. I'd like to know your credentials to back up what you're saying here. No offense intended.

 

However, I believe questioning from afar a doctor's diagnosis and treatment plan when you haven't attended the patient cannot be a good thing. Do you know the doctor's experience and track record? Do you know enough about the patient's diagnosis to render this oddity determination?

 

Let us all be positive and supportive for imagooddog's decision treatment and future. He's consulted a physician at a major medical teaching hospital. He's agreeing to the treatment. Disparaging his decision by calling it odd, failing the standard of care and scientifically irrational on an anonymous blog isn't supportive of him in my mind. It can only cause doubts.

 

Faith in your medical practitioner's guidance is a major part of any rationale for undergoing treatment. I wouldn't let your questioning bamboozle me.

 

 

It's tough watching your body age, but there is a lot of good advice here. Best of luck to Imagooddog going forward.

 

And Size=1....very clever ISC.

Link to comment
Share on other sites

Surgery for dry macular degeneration to prevent deterioration sound exceedingly odd, this needs a lot of detailed explanation as this is not standard of care and as such sounds experimental and in addition on the surface, does not seem to have any scientific rationale behind it.

 

I read this a few years ago. This could be the recommended surgery. Here's the gist and the link:

"While there are no medical treatments for dry macular degeneration, there is a procedure available that may help you to see better. It involves a surgery to remove the natural lens of the eye and replace it with a miniature telescope. This is followed by an extensive training program to learn how to function with the magnified vision provided by the device."

http://www.amd.org/what-is-amd/dry-amd/what-are-my-treatment-options.html

Link to comment
Share on other sites

I read this a few years ago. This could be the recommended surgery. Here's the gist and the link:

"While there are no medical treatments for dry macular degeneration, there is a procedure available that may help you to see better. It involves a surgery to remove the natural lens of the eye and replace it with a miniature telescope. This is followed by an extensive training program to learn how to function with the magnified vision provided by the device."

http://www.amd.org/what-is-amd/dry-amd/what-are-my-treatment-options.html

 

Well, the website you referenced does say The telescope implant has been shown to improve vision and quality of life in people with severe vision loss from age-related macular degeneration. It is available to those with "End-Stage" AMD, which means that both eyes are affected with advanced AMD, with vision that is referred to as "legal blindness". Not everyone who has End-Stage AMD is a candidate. For instance, you cannot have the procedure in an eye that has already had cataract surgery. The OP does not appear to have end-stage AMD. One could infer, therefore, that any surgery at this point would be experimental in nature. I can understand drintor's concern in that there is something perhaps disquieting if there was no disclosure that the planned procedure is experimental/non-standard in nature. Of course, one cannot be fully critical without full information. However, if it were my mother who told me that a doctor was planning surgery for early AMD, I would want to go with her to the doctor to get more information before the procedure got my blessing.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Recently Browsing   0 members

    • No registered users viewing this page.

×
×
  • Create New...