A must read for high myopes

[dukey]

This book is a must read for all those with high and degenerative myopia.

The myopias: basic science and clinical management / Brian J. Curtin.  

It is written by probably one of only a handful of researchers who dedicated their careers to myopia - Dr Curtin. He was also one of the first to describe the posterior staphyloma, a truly horrible condition which is responsible for much of the atrophic damage, and which is A LOT more prevalent than you would think. Be prepared though, it is a very scary read!!! What is interesting is that CNV is only briefly mentioned and it is clear from this book that chorioretinal atrophy is THE serious condition in myopia, not CNV, as all the modern research would have you believe. It is my feeling now after reading this that the only reason CNV has gotten so much attention lately is because of the treatment options currently available. The idea that CNV is responsible for most of the vision loss in myopia is false (I know, even I believed the hype only a week ago). It is a disaster that much of the early work described in this book has not been developed further, a real disater. Dr Hagan will disagree and say that never could so much be done for myopes than now, but this is false hope for many who do not suffer the "wet" form. For those with atrophic changes not linked to CNV, the outlook is bleak to say the least and NOTHING can be done for you. This includes myself. Yeh you can take vitamins, big deal.

I could go on and on and on. Even rare genetic conditions have over 10X more articles in general. This should highlight to myopes that they really are on their own for the most part. Those who believe that the worse case scenario is just central vision loss need to think again. I have seen so many comments thrown around this forum like "...oh don't worry, you will only lose 5% of your vision, your peripheral vision will remain intact". This is not always the truth and in most cases, high myopes with staphyloma will have severe vision loss, which includes the periphery as peripapillary atrophy around the optic disk spreads and destroys side vision. Combine this with increasing macular degeneration and you can figure it out for yourself.    

I hope many of you will make an attempt to get hold of this. DO NOT rely on your eyeMD to know all of this stuff; most probably havent even read the book. This is another disgrace, lazy doctors who go can't be bothered to even read classic literature which is 100X more informative than any of the **** that is written today. It's just a shame you have to spend hours and days of your own time to really understand your condition and the poor prognosis that it entails. Of course, I am in a bad mood and am in a pessimistic mood today, but I feel cheated by the medical community. This is made worse when it becomes obvious that perhaps the only promising surgical technique, the scleral buckle, has been swept under the carpet and ignored. Sure it was experimental and had its problems but all it needed was a bit of development, which sadly never came and probably never will. As Curtin says himself, it is an absolute mystery why more research is not done on myopia. It truly is a blinding condition. To prove a point, a Pubmed search right now reveals the following:

Search: Pathological myopia = 397 articles since 1951
Search: Age related macular degeneration = 12,090 going back to 1904
Search: Diabetic retinopathy = 18,552
Search: Retinitis pigmentosa = 6596

Sad, just sad!  

[John C Hagan III, MD, FACS]

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[bad eyes]

You finally "see the light."  I have been stating this same sentiment for a very long time.  As an avid researcher in both the medical and behavioral sciences, I know very well how research on particular disease processes is ignored while other disease processes are granted more than just due.  Part of this has to do with advocacy, part has to do with professional interest, and part has to do with money (ophthalmologists who choose refractive surgeons make good money and have "happy" patients).  The ophthalmologists here in the U.S. have ignored and basically "written off" pathological myopia - both in terms of its etiology and treatment (other than CNV).  We have no advocacy and next to zero professional interest.  It's sad to me that ophthalmologists in third world countries (e.g., China) are the medical professionals who show the greatest interest in this disease.  I feel abandoned by my own country in this regard.

While many patients may just as well prefer "blissful ignorance" regarding their condition, I would have preferred that the ophthalmologists who had examined me all these years (I'm 38) been much more upfront concerning my condition and its threat to my vision.  Knowing earlier would have enabled me to shape my professional and personal life differently.  I would also been able to make better treatment decisions.

I can attest to the effects of peripapillary atrophy.  I have significant distortion and have lost huge chunks of my peripheral vision in both eyes - so much for macular translocation implants.

Perhaps, Dukey, you will be one of the lucky ones - maybe your condition will stabilize and your vision loss will be minimal.  If you do not have a posterior staphyloma, your prognosis - as you know - is better.

Finally, to end my soapbox, if pathological or high myopia runs in your family, make certain that your children spend plenty of time outdoors doing activities that emphasize distance vision (the vitamin D also can't hurt).  Limit excessive near-vision activities.  Regardless of the fact that a miniscule amount of controlled studies has said that these environmental factors do not play a role, there is an abundant amount of compelling evidence - allbeit more inferential - that they do indeed matter, at least when a person might be genetically predisposed.    

[dukey]

Very nice post and I am in complete agreement with you. Basically all you are left with is hope and that is about it. You just hope it doesnt get as bad for you as it might for others. But even then, what about those who do suffer disability. I have found people on line who are teenagers and who will never be able to drive because of this condition. What is going on here? It's a terrible shame but there are some positives for me. Because I know of my condition very early, I can plan for the future, just in case. I am about to take up a good disability insurance for example and that puts my mind at ease that at least I wont be reliant on the state if the worst should happen. What is annoying for me though is the lack of basic scientific information regarding progression and prognosis. I am a researcher too (post-doc) and it is very frustrating to see this.

Also, I have noticed that the studies that are out there are EXTREMELY poorly designed. There is basically one study on chorioretinal degeneration progression in myopia and it is woefully inadequate yet is cited by every single other paper out there. I dug it out at our library here and it is a joke. In any other biomedical research field, the paper would not get past peer review, no question, yet it is the go-to paper for discussions on the topic. Low number of subjects is the norm for these type of studies and they are massively over-analysed in their interpretation. Essentiallty the further you dig into this subject, the more desperate you realise the situation is.

I noted in your previous post that you made some decisions regarding implants. The outcome sounds unfortunate for you. Anything which raises IOP in myopia is potentially disastrous and can expand existing staphyloma leading to a increase in atrophy. I will not let anyone touch my eyes unless it is to treat the underlying condition. I would rather wear big fat glasses that risk the serious complications. I hope your case turns out ok though.  

[John C Hagan III, MD, FACS]

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[nickppatel]

Can you tell me more about posterior staphylomas?  When do they usually develop? Do they always or usually develop in high myopes? I have high myopia, about -12D each eye, but my eyeMD and optometrists all say the eyes look 100% healthy.  Is this something to be concerned about in the future?  Thanks.

[dukey]

Basically, refractive error is not an indication of whether or not a person will develop pathological myopia. The length of the eye, or axial length, is far more important. The incidence of staphyloma ranges from around 15% to 90-100% in highly myopic eyes (>-8D) depending on which study you look at. With your level of myopia, about half of the eyes would be expected to have some degree of ectasia according to older research. It is not always easy to diagnose in early stages and it is my opinion that many docs do not even know what to look for. My doc says I do not have any, but I do not believe that for one second. They are usually present at birth but do tend to progress as you age. The level of this progression, or how deep the staphyloma becomes, essentially determines how badly affected the eye will become. Atrophy in and around the borders are what cause the problems. It is important to realise that staphyloma progression can occur in the ABSENCE of refractive changes. Therefore, just because your glasses prescription has not changed for a year or two does not mean you are out of the woods, although it probably does indicate that things wont be too bad! How and when you developed myopia can also be a clue to its future progression, but you sound OK to me. Note, however, that everything was fine for me up until I was 28 when it all started to go a bit wrong and I have an identical refractive error to you.

Don't worry but just be mindful of any changes.

[nickppatel]

Thanks for the information.  Interesting that staphylomas appear to be so prevalent, yet many ophthalmologists (including Dr Hagan) seem to insist that their highly myopic patients do pretty well in the long term, with no serious vision loss.  I wonder why the discrepancy.  Seems that if you're highly myopic, you're very likely to have a staphyloma, and if you have a staphyloma, it's likely to progress until you're pretty much screwed/blind.

[nickppatel]

PS, I'd be interested in hearing Dr. Hagan's (or any other doctor's) thoughts on all this.

[dukey]

No that is not the case. Dr Hagan will be the first to admit that some people can develop severe problems but that most do OK. I believe this to be generally the case too but Dr Hagan has much more experience with it than any of us so I'll let him comment. It is probably the case that some authors get to see much more severe cases as they are referred to them from all over so that can account for some differences in opinion. I think this is probably the case for Dr Curtin et al who had a myopia clinic back in the day. His opinion is far bleaker than anything I have ever read on this topic.

One of the problems that I have is that it is commonly stated that PM only affects the central part of your vision. This is 100% not true and can affect peripheral vision badly and profoundly.  

[kg17]

I, too, seek additional information regarding posterior staphylomas.  Are they easily discernable on clinical exam?  Are they more definitely distinguished on an OCT?  Is it readily diagnosable to the average retinal specialist?

[AnnaE]

The retinologists that I have quit for more serious reasons did not like the fact that I read so much. I have said this before. I have spent a lot of time learning about my eyes. So much more to learn. It is difficult, because I need to spend time on my work.

Your postings have made me aware how much I have to learn. I will get the book.

Thanks