myopic macular degeneration

[jrocco]

I have enjoyed reading the posts and thought I should ask my question here.  I have been nearsighted my entire life.  I always wore contacts and managed quite well.  In 1998 I had a retinal detachment in my right eye.  I affected the macular  and almost the whole eye.  After surgery, and a buckle things were almost as good as new, except for the added power needed for the contacts.  The new power was -16.75-50 OD -13.75 OS.  During the next ten years I had 3 retina hemorrhages in the left eye.  One below the macular.  All of them healed on their own with minor scarring.

In February of 2009 I had cataracts removed and IOL put in.  OD is now +1.00 -.50, and the OS is -50-50.  Pretty good except for the fact that since then my left eye had deteriorated to the extent that I cannot see faces, read, or watch TV without a major spot in the middle and distortion all around. I am under the care of my retina specialist and he has looked at it three times and finally said it is MYOPIC MACULAR DEGENERATION .  He said to come back in six months for another look, but there is really nothing to be done at this time.  He said to eat right and just be aware it could get worse, or it could, just maybe, get better.  These things are just issues one has if they are high myopic

If I have a question I guess it is this, is there any thing special I could be taking, lutian, zinc, fish oils, that would help?.  I asked the Dr and he just laughed and said go ahead, but I got the feeling he thought just a good diet would be as good, otherwise there is nothing to be done but let whatever happens happen.  The wavy distortion, and dimness is really hard to adjust to, but luckily it's only in my left eye.  I see great out of my right eye after the implant.  
Has anyone had this and had improvements over time?.

[bad eyes]

There are several of us out there with myopic macular degeneration.  You might want to read Dukey's posts as he provides some valuable information regarding research trends in this area.  Most ophthalmologists have very little understanding of this condition, and tend to "write us off" as far as treatment is concerned.  If you are interested in pursuing an option available to you now, you might google and contact Dr. Brian Ward in California.  He has refined a surgical technique called posterior pole buckling that you may be a candidate for.  It will not give you back your lost vision, but it might prevent further deterioration in both eyes.  He just published a peer-reviewed journal article listed on PubMed.gov that demonstrates the safety and efficacy of this technique.

[John C Hagan III, MD, FACS]

There are a lot of things that help age related macular degeneration and you should probably do all of them however they have not been tested on ARMD.

Use the search feature and archives to read about things to slow dry ARMD from progression.

JCH MD

[jrocco]

I have used the search feature and it has given me a lot of good reading, and a lot to think about.  Until I came on this site and started reading, I never thought about a name for what is going on with my eyes.  When I would ask the Doctor he would just always say that high myops had long eyes, and a stretched retina.  After reading on here, I finally asked him what is the official name for what this is and he told me and I now have something to do a search on and look up!

Seems as though there is a lot of research going on but I get the feeling at age 56, I will miss out on the big breakthrough when it happens.  After doing a quick search I can see we are 15 to 20 years away from a "cure", if that's the right word, for macular and retinal problems.  Reading about the new promising drugs made me wonder why my Dr did not mention those as possible things to use to help save the vision I still have.  He has always been a wait and see kind of guy, very conservative when it comes to doing any thing back there.  Even with my cataracts, he said I'll see you in six months, then it was see you next year, until I finally said I am having a hard time seeing with these can they come out now!  He agreed it was time when it affected my work.  
I asked him at that time if I should not do it because of the fragile vessels in the eye, but he said to go ahead with the IOL, they have done others will the same conditions and it went well.  He has mentioned that the cataract surgery may have put added stress on my eye but who knows why these things happen, maybe it was just time for something to leak again.  I have been hoping it will absorb and settle down, but after reading some of the threads, I don't have much hope for that!

[kg17]

If you are able, seek out a retinal specialist with a good reputation at a university teaching hospital.  Ophthalmologists at teaching hospitals tend to stay on top of the latest research.  That said, Dr. Brian Ward, who is affiliated with UCLA, seems to be one of the few most "expert" in myopic macular degeneration in the U.S.  Traveling for a consult or arranging for a consult via a retinal specialist where you are located may be very helpful to you.

Many retinal specialists are quite skilled at treating macular bleeds due to high myopia since the injected drug treatments (e.g., Lucentis) are the same as for age-related macular degeneration.  The research indicates the treatment to be very effective for macular leak if delivered in a timely fashion.  If you're not receiving this type of treatment, you're not under the care of the right doc (IMO).

[John C Hagan III, MD, FACS]

Avastin is a much less expensive treatment that is injected instead of Lucentis and isjust as effective.

JCH MD

[dukey]

Well it is amazing that it took so long to get a diagnosis. A single bleed in a high myope is almost diagnostic for degenerative myopia. Throw in the RD and you should have been diagnosed a long time ago in my opinion. The reality is that you have probably had macular degeneration for over 20 years (probably longer) as a result of your myopia.  You need to find another doctor; conservative is not the name of the game when it comes to treating myopic maculopathy these days. You must be agressive. There is a lot of good information on this site so I would just advise searching and then re-posting with any specific questions.  

[jrocco]

If the bleeding stops on it's own, as mine always has, would avastin help with the distortions and wavy lines?  I'm not sure if the drugs only stop bleeding, or if they help restore some of the lost vision.

Dukey I know you are correct when you say I had MD for a long time.  Every year my eyes would worsen instead of stabilizing like so many do.  Maybe my RD just did not tell me because he thought I would not understand the correct term and so he would just tell me the eye was long?? LOL.  The detachment was a very scary ordeal, and yet that is now my good eye, and I am thankful there is a buckle there to hold it all in place, as that may be the thing that saves that eye.  

As a former ABO optician in the states, I used to try and help ARMD patients when they would come in my store to get magnifiers and such.  I had a nice stock of B&L lighted ones, and I have one at home now which is such a help.  At the time when patients would come in I never realized the struggle they were going through, I was sympathetic, and helpful, but until you experience something like this, you just don't really understand it all.  My myopia lead me into being an optician,  I could very much relate to what all my customers were going through when they came to get new glasses.  I had first hand experience with "thick" lenses, and contacts.  The store got closed and I moved on to something else, but I did help a lot of high myops with their glasses during my time there.  I often think about getting back into that field.

[bigfoot255]

I just read Pfizer is putting 100 million into stem cell treatment for AMD and it thought to help with Myopic Degeneration as well.  The process was developed in the UK and should be common treatment within 6 to 7 years. Try a google search and there is an article on this subject.

I am 56 w/Myopic Degeneration as well as you so maybe there is some hope in the not too distant future.  So far I am still seeing very well but my vision in my right is a slightly distorted,

There is a website from Schepens (a part of Harvard Medical School) that discusses our problem and they talk about stem cell treatment as well.

Good luck to you!