Myopic degeneration/lacquer crack

[wwhmustaine]

I was recently diagnosed with myopic degeneration in my right eye, and told that I have a lacquer crack in that eye. I am 40 years old, and as a practicing attorney, am obviously concerned that my condition will either worsen in my right eye, or also develop in my left eye, thus rendering me essentially disabled.  Is there any treatment, therapy or surgery available for my condition? If not, what are the best preventative measures to take to ensure the condition does not progress in my right eye or begin develop in my left eye?  Lastly, what is the likelihood that the condition in my right eye will worsen, or that it will also develop in my left eye?  In other words, is it likely that I won't notice any significant decline in my condition over the next few decades?

[John C Hagan III, MD, FACS]

There is no treatment for "Dry" myopic macular degeneration or lacquer cracks. However either of those can lead to "wet" MMD due to the development of choroidal neovascular membranes. ther treatment for that is intraocular lucentis or avastin or photodynamic therapy.

I cannot quantitate the risk.  If the other eye is myopic the same amount the risk of the problems occuring there are likely between 20 and 40%..

JCH MD

[wwhmustaine]

Thanks for the reply, Dr. Hagan.  

My right eye (where the problem is) is -8.5, and my left is -7.5.  Does this mean that the chances, over time, of the same problem developing in the left eye would be less than the 20% to 40% that you cited?

This may require pure speculation, but is there anything on the horizon that could eventually serve as effective treatment for this condition?

Lastly, should I expect the problems in right eye to worsen over time, and are there any preventative measures I can take to guard against this?

Thanks again.

[John C Hagan III, MD, FACS]

I would say the -7.5 would be toward the low end and the -8.5 towards the higher end.

Avastin and lucentis are new treatments and a huge improvement over older methods (laser for example) for treating "wet" NV..  

There is longstanding studies on how to try and prevent high myopia. Long term use of atropine eye drops is under study. Other than that I'm not aware of anything else.

JCH MD

[wwhmustaine]

"I would say the -7.5 would be toward the low end and the -8.5 towards the higher end."

I'm not sure I understand what you're saying.  My right eye is -8.5, and that's where the lacquer crack is. As a result, that's the eye where I have blind spots, straight lines appear curved, etc. My left eye (which is asymptomatic) is -7.5.  I guess my question is this: How likely is it that a lacquer crack (assuming this is what's causing the problems) develops in my left eye? Is it the 20% to 40% you cited, or would it be lower than that?

And with proper maintenance and prevention (Preservision with lutein, fish oil supplements, multivitamin), is it more likely than not that my bad eye won't get any worse than it is now, or should I expect it to get worse over time?

Thanks.

[John C Hagan III, MD, FACS]

Because the eye is less myopic it would be closer to 20%.

There is no research like that done on age related MD that diet, fish oil and AREDS vitamins work. Nevertheless its important to do what you can to avoid ARMD in addition to myopic MD.

JCH MD

[wwhmustaine]

One last question, then I'll leave you alone: My RS suggested that over the next few weeks/months, as my brain "adjusts" to the deficits with my right eye (unfortunately, this is my dominant eye), my overall vision may actually somewhat improve, i.e., the left eye will begin to compensate for the right eye.  Also, he says the headaches should stop.

Do you agree with these opinions?

The thought that my vision is as good now as it will ever be is more than a little disheartening, and the prospect of having to live the rest of my life with this condition is overwhelmingly depressing.

Again, I thank you for your time and insight.

[kg17]

I, too, am 40-years-old and suffer from degenerative myopia (-17 bilaterally); have laquer cracks, atrophic damage, blind spots, reduced color vision, reduced BCVA.  I would suggest that you read "dukey's" posts as he has provided extensive research on the topic here on this forum.

Dr. Brian Ward in California is a leading expert in degenerative myopia (there are very few) who has refined a surgical technique called posterior pole buckling which is intended to arrest the myopic progression and thus, halt subsequent damage.  He just published a peer-reviewed paper on the technique - you can locate the citation using Pubmed.  Dukey is, or has, just shortly had the procedure done on one eye and will post his experience as soon as he is able.  Most retinal specialists will just monitor your condition, treating complications as they arise.  But Dr. Brian Ward is actually providing a tx that addresses the cause.  If able, you might want to seek consultation.

[John C Hagan III, MD, FACS]

I am not in a position to agree or disagree with your RS who should have the best opinion available. Neuroadaptation may help you ignore some of the blur or distortion "metamorphopsia"

KG17 and Dukey are both helpful and knowledgeable.

JCH MD

[wwhmustaine]

Thanks for the reply. I see that you're a pediatric neuropsychologist, and I assume that you're still practicing. If so, and if you don't mind me asking, have you been limited in what you've been able to accomplish professionally?  Does your condition affect you on a day to day basis?

I was diagnosed with this just a week ago, and my symptoms only began a few days before that. As an attorney, I spend basically all day every day reading, and at this point, it's a real struggle just getting through one day. Hopefully, my eyes/brain will adjust to this (neuroadaptation) and my vision will improve, because to be honest, I can't imagine having to deal with this for the next 30 years or so I'll be working. Furthermore, that assumes my conditions remains the way it is currently.  

I guess I'm just looking for some hope right now.  

Thanks.

[John C Hagan III, MD, FACS]

-

[kg17]

I truly understand your despair and disheartenment.  I received the myopic degenerative diagnosis two years ago when I was having multiple symptoms.  Like yours, my profession is also visually intensive.  Due to significant eyestrain, headaches, and fatigue, I've reduced my work hours to a more manageable 25-30 instead of the 50 I did previously.  I rarely drive and then only to very familiar locations.  I've also readjusted my long-term goals in my profession with the realization that my vision is at high risk for further deterioration.  

Neuroadaptation is a real phenomenon and can work to your benefit.  Time is your greatest ally and you can facilitate the process by trying to reduce your anxiety as much as you can - try to go on "autopilot."  Don't focus on the visual aberrations so that the brain can learn to "ignore" or adjust for them.

You might seek the help of a low vision specialist.  Even though you might not "qualify" for low vision services thru state help, a low vision expert can offer some helpful tips to enhance your vision, reduce eyestrain and headaches, etc.  For example, adjusting the lighting and using "natural" light can help immensely.  I am able to read when I have my back to the window as opposed to trying to read under flourescent lighting.  I've also found that reading my professional journals on the computer is easier as I can adjust the contrast and font size.  Whenever possible, I scan documents into my computer and read them.

If you can, seek out a consultation with Dr. Brian Ward.  He may be of some assistance to you.  At the very least, find a very competent, highly regarded retinal specialist and stay under his/her care.

[John C Hagan III, MD, FACS]

I wanted to add that the treatment of keratoconus where the cornea is structurally weak and bows forward in a "cone" shape is undergoing a transformational treatment with riboflavin cross-linking. Riboflavin is dripped on the cornea then "hardened" with a special light. Several studies are very high on the procedure and it should become the standard RX in the next few years and hopefully eliminate the need for corneal transplants.

My understanding is that researchers are now trying to see how the same or similiar procedure might be done on the back of the eye to strengthen the sclera. So there is hope and this is research.

JCH MD

[kg17]

I have read the abstracts on these studies using ribroflavin and UV light for scleral strengthening.  My own personal dilemma is whether to opt for surgical intervention (e.g., posterior pole buckling) that is available now, or whether this other treatment is far enough along as to be available in time to help me.  I certaintly don't want to subject my eyes to any more surgery, but at the same time, doing nothing does not seem to be helping the situation either.

Any thoughts?

[John C Hagan III, MD, FACS]

I have no experience at all with myopic scleral buckling. Never taken care of a patient that had it done. I don't keep up with the literature over and above what I need to answer first order (easy) questions about the procedure. I do not know enough to give you an answer. I am really sorry I can't be of more help but one thing I've learned over the years that saying "I don't know" is better than a guess or an incorrect answer.

I do wish you the best of luck. Perhaps some of the"experts" in the field can help you.

JCH MD

[kg17]

Thank you.  I have much respect for professionals (e.g., physicians) who can say, "I don't know."

I will keep seeking out info. and stewing over this dilemma.

[John C Hagan III, MD, FACS]

-

[dukey]

Sceral cross-linking is 10 years away according to the inventor of this technique following personal communication with him sometime ago, possibly sooner in Europe. I believe I wrote about this treatment on this very forum months ago. There are also recent studies suggesting it could lead to some problems in the retina as it is a fairly risky procedure so time will tell on that. I'm 50/50 on that one. I think buckling is the future with new materials, it works great for RD, no reason it can't work in myopia.

wwhmustaine, I will say what no-one else will say to you. Probably it will get worse for you, most likely you will develop some further complications and you will be alarmed at how fast it can happen. And it will probably affect the other eye to some degree. It is rarely symmetrical though and it is highly heterogeneous and unpredictable. The classic progression is one of small declines followed by long periods of stability, losing small amounts of vision each decline. Even an highly experienced myopic specialist (there are none btw) could tell you which path you will take. The best predictor is your stahpyloma and how deep it is period. You will for sure have one, no question, and if your doc says you do not, walk out and find someone else. Your Rx is essentially irrelevant now. You will learn to talk in axial length and not minus numbers.  


Kg17, I really do not know why you are waiting any longer. I really don't.  

[John C Hagan III, MD, FACS]

-

[wwhmustaine]

When you say "staphyloma," are you talking about posterior staphyloma?  If so, how would I discover if that applies to me, and if so, to what degree? I haven't heard a dr. mention that, nor have I seen it in any of my records.

Also, you seem pretty sure that my condition will worsen, which is the exact opposite of what the opthamologists who have seen me said. Their opinion is that while it could conceivably worsen in my right, or develop in my left, neither is likely to happen.  In fact, the RS I saw yesterday (I'm currently 20/20 in both eyes, even with the blind spots and wavy lines in the right eye) said that my condition is not a progressive one.  There is no leakage at this point, and no reason to expect any. And when I asked about sceral buckling, was told that this applies only to detachment, which is not an issue with me.   It is possible that my condition is different from yours and kg17's, as based on my research, I should not expect my problem to get worse.  I'm not arguing w/ you, bear in mind, I'm just curious as to why you seem so sure that things will go downhill for me.  Also, I want to make sure you're saying that pole buckling would be a viable option.

Lastly, do you know anything about FSM, or frequency specific microcurrent? I've heard that improvement is a real possibility with this treatment.

Thanks.

[kg17]

The retinal specialists that I've seen have said much the same to me.  However, lacquer cracks are a classical symptom of myopic degeneration and while your condition may remain stable for many years, the odds are more in favor of problems as you age.  The beginning stages of posterior staphylomas are very difficult to discern on physical exam for run-of-the-mill retinal specialists or general ophthalmologists.  I'd recommend the book "The Myopias" by Dr. Brian J.Curtin if you'd like a basic text.  

For me, the nail that hit me on the head was when I had a multifocal ERG done by a neuro-ophthalmologist that clearly showed that the photoreceptors in my retina were functioning at least two standard deviations below norm, with many patchy areas of "dead" zones.  That was scary.  There's not much "reassurance" that a retinal specialist can provide me after that.  I'm in process to pursue the posterior pole buckling.  Hoping for a good poker hand in the future doesn't seem like a good plan at this point.  Posterior pole bucklling is NOT scleral buckling for retinal detachment, and I don't believe that ophthalmologists or retinal specialists know anything about it except for Dr. Brian Ward in California.  It isn't mainstream treatment right now.

I understand that you'd like to believe that you are okay.  But I think Dukey's right.  

[wwhmustaine]

Thanks, kg17.

I've made an appt. with Dr. Ward for next month, so we'll see what he says.

[nickppatel]

Assume that someone with extreme myopia has no degenerative changes or at least has minimal degenerative changes.  She has a staphyloma.  She gets posterior pole buckling and the axial length stops changing, and the staphyloma stops deepening.  I understand that degenerative changes can still occur due to the axial length that is already present.  Can either of you comment on why this happens?  I assume it's because of aging, but I'd think that stopping axial growth, combined with new therapy for CNV, would be TREMENDOUS in minimizing any problems and preserving good vision for life.

[kg17]

Dukey has the background in molecular biology so he probably has a much better understanding of this processes than I do.  However, I would liken it to the mechanical forces that are present when cement is stretched due extreme heat - it cracks under the physical pressure.  When the retina is "stretched" (extreme axial length), all the various cellular and vascular structures are mechanically stretched beyond what it can reasonably tolerate, thus resulting in its "degeneration."

[dukey]

Yeah kg17 is right and it really is quite simple. if you put any kind of pressurised sphere under those kind of forces, eventually something is going to give. The human body is a remarkable thing and honestly it is amazing that it takes, on average, 20-30 years before symptoms appear.  

The issue with the buckle procedure is that there is a fine line between reinforcing it too much and not enough. If you don't put enough tension behind there, you risk doing nothing to stop the elongation. If you put too much pressure on the macula, all kinds of problems can occur, many of which can be quite nasty. It is true that in most cases the axial length is not significantly reduced by the current procedure but in almost all cases, it does not get longer either. Therefore you are still left with an abnormally long eye and you still have all the problems with that. If you catch it early enough though, the idea is that you limit the extent of degradation because you prevent long term (>20 years) axial elongation. I think only time will tell how effective it really is.  

Note that many years ago some surgeons heroically (and very aggressively) tried to shortern the myopic eye using a technique called scleral resection. The outcome was disastrous for lot of the patients, some of who went completely blind due to massive bleeding etc. Not good!    

[dukey]

Just as a general comment, I think that there are still a lot of unanswered questions and I really do not think anyone can answer them. For me though, the staphyloma seems to be the real devil. The evidence is overwhelming that the deeper the staphy gets, the worse it gets for the patient. Early studies were very clear on this but what is remarkable is that a significant proportion of people with staphy and degeneration will maintain good vision. The diagnosis is not a "death sentance" for your eyes by any means and there are many disorders which you can develop which are far worse that PM. The real problem is that no one can tell you where you will be in 10 years time or even 6 months. It will also be interesting to see how Avastin etc change the prognosis for PM patients long term. I think it will be very significant.

Of course there is still validity in the "wait and see" approach for many patients. For example, my retina doc told me of another PM patient who had one bleed (Avastin treated) and that it is for many years. Close monitoring early on in addition to patient and doc education is vital.

I'm sorry, I try to be as helpful as possible but I just don't know all the answers. I wish I did.  

[wwhmustaine]

I had about a 30 minute discussion w/ Dr. Ward yesterday, in light of my upcoming trip out to see him. He refers to the procedure as "donor sclera buckling" (using donor tissue), but said that it's also called posterior pole buckling. I asked him what the risks were, and he said like w/ any eye surgery, the risks are bleeding, infection, retinal detachment. However, he said that in the 300+ procedures he has performed, none have ever led to any of those complications.

He also noted that I do NOT have a staphyloma, which is a different animal from the lacquer crack. Another RS I saw yesterday (2nd one this week) said that I don't have a staphyloma either, so that's basically a given at this point.

I asked him what the chances are of a crack developing in my good eye, and while he said of course it is possible, that the chances are, and I quote, "not so great." (He's British.)  My good eye is less myopic, and therefore not as stretched out as the other one, and less prone to damage at this point.

And for what it's worth, the procedure takes an hour and 17 minutes, and a general anesthesia is used.

One last note: It's amazing how little the typical RS knows about this stuff. I asked the local guy I saw yesterday (highly respected and recommended) about the procedure, and he said do NOT do it. He also said that a sponge is used (not true), that complications are common (not true), and that the lack of a "randomized prospective study" means that there's no evidence of the operation's efficacy (misleading).

Bottom line is that, in my case, the sling (Dr. Ward's description) that's used should stop the retina from expanding, thereby stopping the crack from increasing or expanding.

I'll obviously be more informed after my visit with him, but so far, the prospect is definitely an intriguing one.  The primary issue at this point is whether to elect to undergo the procedure (with its attendant risks and uncertainties), or just stand pat and hope no add'l problems arise.

[dukey]

Yeh I think you have a tough decision, but if there is not a significant staphyloma I would not have the surgery personally and I would be surprised if it was indicated. Just out of interest, how did Dr Ward know you did not have a staphyloma without examining you? Did you send him pics?

I actually spent an hour reading all the old school literature, going back to 1964 (Snyder, Thompson et al.) last night in the library. The results were actually overwhelmingly positive. It wasn't until Curtin published his paper in the mid 80's that opinion started to go downhill. There was also a general confusion as to the goals of the surgery (preventative vs. cure) at that time and I think it still persists now.

wwhmustaine - the opinion that one of your RS gave you about the surgery I would say is typical. The sponge was the older procedure.  

  

[kg17]

I'm assuming that you have staphylomas in each eye?  Did your regular RS pick it up on clinical exam or did Dr. Ward spot it?

[dukey]

No my regular RS was not good at recognising them...but by his own admission I might add. Dr Ward saw them in a few seconds! I guess it comes down to experience. I have them in both eyes.

The good thing about my RS is that he recognises his own limitations and has always encouraged me to seek out other opinions.  

[sophia35]

I understand from these posts that  a  staphyloma isn't easily recognized. My question is, assuming that the doctor is experienced, can it be detected in the "regular" exam I do where I get my eyes dilated (?sp) and retinas checked (think its called fundoscopy).

[dukey]

They can be easy to spot but it depends on how deep they are and where they are positioned. My feeling from many posts on here though is that a lot of docs miss them, especially in young people where they may be in the early stages.

[dukey]

You might all want to check out this link:

http://www.ncbi.nlm.nih.gov/pubmed/18455142?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

It is the most recent study on staphyloma in a large cohort of PM patients and is very similar to the early papers published by Curtin et al. (1977), which was really the landmark paper. See here if you can get it:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1311542

In the latest study it is striking that 90% of high myopes have some form of staphyloma. It is the degree and type which varies and which determines future problems.

I know many of you do not have academic access to these journals so if you would like the full article, send me a PM and I can e-mail the PDFs.  

[nickppatel]

Interesting ... interesting ... here's a question - can a staphy be detected from a profile MRI image?  I had an orbital MRI done awhile back for another reason, but I went back and looked at the profile views of my head.  I can see the hollow globe of the eye, but it's perfectly round in the back of the eye.  There are a couple of images where there seems to be a very sharp, hook-shaped indentation, but I think that has to do with the optic nerve or some other connection from the eye to the head.  

[dukey]

Oh yeah of course. It is probably the best way to do it I would have thought. Does this look familiar?

http://www.google.com/imgres?imgurl=http://www.radpod.org/wp-content/uploads/2008/07/staphyloma.jpg&imgrefurl=http://www.radpod.org/2008/07/30/staphyloma/&h=600&w=600&sz=51&tbnid=Q3XRRL9ye8RXhM:&tbnh=135&tbnw=135&prev=/images%3Fq%3Dposterior%2Bstaphyloma&hl=en&usg=__zagHR7g7YADe16O38KlhRQTHEFc=&ei=K5tFSqDrHZD7tgeWmKS8Bg&sa=X&oi=image_result&resnum=5&ct=image

[nickppatel]

Well, the general image looks familiar - but are there staphys in those eyes?  How can you tell?

[nickppatel]

Oh - those are anterior staphylomas

[nickppatel]

I ran to the study to see if I had any top-down shots like that one - unfortunately, no.  But I do have the side-profile shots I mentioned.  I figure that those would show staphys too, since the eye is a spherical object and a staphy visible from top-down should be visible from the side as well.  I looked at the profile shots again and I see absolutely nothing - just a nice, smooth curve.  Let's hope it stays that way.

[dukey]

There is a huge staphyloma in the eye on the right (as you look at it). That huge bulge you see in the back corner is the staphy. Looks kind of macular to me too. You would need to get the cross section absolutely perfect with this to see it.

[sophia35]

Thanks for info.With -22 and -17 dioptres and over 35 I try hard to not worry too much.
I do try to keep informed and the more I read on this forum the more I realize how
serious the lack of knowledge is in degenerative  myopia  and not only in Portugal  where I live. I

Its sad that only  existing procedure ( buckling) I've read about that has the potencial for reducing the complications of degenerative myopia is only done in the United States.If  crosslinking is ever used in  for myopia, I realize it will be in Europe, but it will probably be too late for me.

Best wishes,
Sophia

[nickppatel]

Can't imagine why you'd have to get a perfect cross section - I would imagine that the staphy is at least big enough to be visualized at several cross sectional levels, no?

[wwhmustaine]

You say that if there is not a significant staphyloma, you wouldn't have the surgery.

Is that because of the inherent risks associated with the procedure, or is it because -- in the absence of a staphyloma -- you wouldn't expect the condition to progress?

[kg17]

bump

[dukey]

You were right the second time, I just wouldnt expect it to progress. However, they can be difficult to spot if they are grade II or lower but at your age if it is not obvious now, it probably will not progress to anything too serious in the long term.

You didn't answer my question - how did Dr Ward know you did not have a staphy if he hasn't yet examined you?

[wwhmustaine]

What he actually said was that if all four RS's I've seen said that there was no staphyloma, that I probably don't have one. Obviously he'll take a look, but when I described everything to him, including the fact that I'm "only" -8.5 in the right and that it really hasn't changed much in the past 10 years or so (it was maybe -7.5 ten yrs ago), on top of the fact that everybody I've seen said that I don't have one, he said that it sounds like that's the case, i.e., I don't have one.

I forgot to ask you, dukey: Did you have the procedure performed by Dr. Ward? If so, how was it? Too early to know whether it was a success, I assume, but I was just wondering what his post-surgery comments were, if anything.

One last thing, for anybody who knows: About a week ago, the "distorted vision" and "wavy lines" aspect of all this really increased. Everything looks like I'm seeing it underwater, or through a bubble. Dr. Ward and a local RS both said that it's common for this particular symptom to be temporary, and that after a few weeks or months, things should revert back to what they were before. Still defects, of course, but the wavy lines and distortions should diminish. Anybody know anything about this?

[nickppatel]

Dukey just posted a lengthy narrative of his (her?) surgery on another part of this site - check it out.

[dukey]

Hey I am little concerned. What exactly do you mean about the waviness increasing recently? If it is that bad and sudden, it could be something treatable like an active CNV which you should probably get checked out ASAP. Have you had an FA done?

[wwhmustaine]

A couple days after I noticed the increased waviness and distorted vision, I saw an RS, and there was no leakage. He even did a dye test, and was certain that there was no exudation, CNV, etc.

Like I said, he and others (including Dr. Ward) have said that this is usually temporary, and I was just curious as to whether anyone else had experienced this.

[kg17]

It is my understanding that any sudden change in vision such as increased waviness and distortion is likely due to a sudden event that is occurring in the retina (e.g., CNV or new lacquer crack).  However, another possibility is that visual defects of a milder nature have been present for awhile and perhaps you have now just become aware of them because you are more attune to your vision in each individual eye.  

A good practice is to use an Amsler Grid everyday or at least once a week to determine more objectively any new distortions that are present.  Any sudden change warrants and immediate evaluation.

I have distortions from lacquer cracks and the distortions are still present if I look for them.  However, due to neuroadaptation, I don't routinely notice them.

[wwhmustaine]

The distortions are definitely new, but at least as of a couple days after they began, there was no CNV. It could just be the crack expanding, for which I assume nothing can be done.

Here's the time frame:

June 23 - The distortions/wavy lines increased.
June 24 - Saw one RS, who told me there was no leakage/CNV.
June 26 - Saw another RS, who told me there was no leakage/CNV, even after dye test.

So either both guys really missed it, or there is no CNV.

I have an appt. next week at Emory Univ. Eye Center in Atlanta, but I just got a call from an RS there who basically told me that they would probably just confirm what the other 4 RS's have told me, i.e., "nothing whatsoever can be done for your condition."

[dukey]

I'm not sure that I buy that. A sudden increase in waviness is a sign that something is going on. Myopic CNV is not always easy to spot, even on an FA as many docs are more used to the more obvious ARMD type. It can be very occult but can cause some serious damage if not taken care of. An OCT scan would be very useful for you I think. My "CNV" was spotted on an OCT scan after several FAs. My doc was very undecided so consulted his colleagues and we all finally agreed the evidence indicated a CNV (based entirely on the OCT). With the very low risk of an Avastin shot, it seemed almost a no brainer that even if there was a hint of a CNV, I was going to have the injection.

Lacquer cracks progress very slowly (years) but, again, can be very difficult to spot even with FA and ICG. You could easily have an extensive LC under your fovea and not see it, which may account for your symptoms. They can literally form webs of cracks, not just a single line as is commonly believed. There are a number of articles on this. The result is that LCs have been underestimated in PM. Some think that 90% of high myopes have them.

I'm not sure what you mean by temporary. Nothing is temporary in PM. Yes some have indicated that the CNV will regress on its own but it is rare that it does this without inflicting some form of PERMANENT damage.

There is also a lot of merit in what kg17 said. Once you develop eye problems, it has a very large impact on your life and you become very tuned in to your eyes. I noticed things that were never there before and I could write a long list of mostly subjective symptoms that I have. The Amsler Grid is the ultimate test though. If there is waviness or spots on that, it is really there. Things can happen VERY fast with PM so be careful. Amsler grid everyday unless you get so depressed and then once a week is good. I find the black grids with white lines are the most revealing/frightening. Oh to have a clean Amsler grid!  

[dukey]

This one is brutal. It will show ANY distortion.

http://www.vrmny.com/images/amsler_lg.jpg

[wwhmustaine]

I'm not sure what an FA is (though I've probably had at least one), but I underwent an OCT last week, a few days after the distortions increased, and again, I was told that there is no CNV. On top of that, a dye test confirmed the same thing.

The way it was explained to me was that an examination of my eye after dilation would make them 98% sure that there was no CNV, and the dye test would push that # up to 100%.

So again, unless the people who are treating me are just completely incompetent, then as of last Thursday, a few days after the onset of the increased distortions, there was no leakage. And like I said, my local RS -- in addition to Ward -- said that these increased symptoms can be temporary.

Also, I have one lacquer crack. I saw it on the film that was produced as part of the dye test. The crack is "Z" shaped, and barely infringing on the macula.

[wwhmustaine]

"So again, unless the people who are treating me are just completely incompetent, then there was no leakage."

Turns out they're incompetent.  Last Thursday the 25th, even though I told him the distortions had gotten worse, he said there was nothing he could do because he didn't see any leakage, never mind that any RS with a brain would give a shot of Avastin just to be safe.

Went back today, right after that last post, and there is a CNVM.  My vision in my right eye was 20/25 a week ago, and today it was 20/50.

Had an injection of Avastin, and I pray to God I regain some vision.

[kg17]

I think the odds are in your favor.  You received the shot in a timely manner.  It's very wise that you have sought to educate yourself, and this forum is a good place to start.  I'm glad you went back and insisted to be checked again.  

[dukey]

I'm pleased for you, but feel bad for you at the same time. I would expect the Avastin to clear it up quite easily. Be thankful, a few years ago this would not have been possible. Honestly, this stuff really isn't that complicated and it really amazes me how grossly negligent some of these docs are. Patholigcal myopia CAN and WILL progress quickly in certain people and requires specialist care. It can literally change overnight which is why monitoring and EARLY agressive treatment is so important.

I swear I could walk into any retina office and do a better job than 50% of these docs without even touching the patients. You order tests, look at the results, read the literature and away you go. It's a joke and it may cost you a few lines at vision. I guarantee you it was visible when you first started to notice symptoms. Myopic CNV can be extremely subtle. They should READ THE LITERATURE.

Oh well...........    

[dukey]

"The way it was explained to me was that an examination of my eye after dilation would make them 98% sure that there was no CNV, and the dye test would push that # up to 100%"

There is your problem. That is ignorance and arrogance in my opinion.

[kg17]

Just back from my 6 month retinal visit from the most reputable retinal specialist.  I have to concur with Dukey.  The biggest problem I see with healthcare, in general, is the ignorance of MDs - they really do fail to keep up on the research literature.  Perhaps it's because I had research crammed down my throat for 6 years of grad and 2 years post-grad, that I just don't understand how clinicians can treat without attending to the literature first.  But then again, an MD's income isn't based on any individual patient's outcome or knowledge of a relatively infrequent disease.  Additionally, accurate interpretation of available research isn't required either, whereas a scientist's entire career depends on it.

In my opinion, I believe that MD clinicians should not be paid more than the PhD/MDs who do the research.  Our system is far too lopsided.

[dukey]

It's the laziness I have a problem with. I don't really care how much they get paid but they should do their best for the patient at all times. If you have a patient who walks in and you only have a basic understanding of the condition, you should either fess up and refer them to someone experienced or, even better, go out of your way to brush up on the area, even if that means going to the dreaded library. I do not think that is an  unreasonable expectation and if I was an MD, that is where I would get the most satisfaction.  

Science and medicine are linked unconditionally. They both need each other to move forward.  

[kg17]

I think the money issue is relevant simply because it is a motivating factor for most people.  When reimbursement is based on the number of patients seen and procedures done, rather than the quality of the outcome, altruism merely becomes a footnote for many docs.  

It is a long-standing joke in med school (here in the U.S.) that those who can't practice, do research.  That perception is tied, at least indirectly, to the amount of money a practicing physician can make as opposed to the Ph.D researcher.

[wwhmustaine]

Anybody have any idea how long it takes for the Avastin to take effect? It's been 2 days since the injection, and there's been no change.

The following 2 articles seem to bode well for me, but they don't say how long it takes to work.

http://www.lowvision.com/avastin-benefits-patients-cnv-myopic-egeneration/

http://www.myvisiontest.com/newsarchive.php?id=779

[dukey]

Try not to worry, you are looking at weeks rather than days. The improvement has been shown to be exponential up to 12 weeks with the earliest detectable improvements being seen only at 2 weeks. The short term effects were part of the early studies on Avastin and myopic CNV. You are only at 2 days so you have a way to go. It may also take more than one injection but this is rare in myopic CNV.  

[virginiana]

This thread (and not just this one) has been really informative. Thank you all!
I am 33 ansd also a lawyer, so it was quite a disaster when I found out 1,5 months ago that I have CNV in my right eye). I had my first Avastin shot in the beginning of June and it took a week to notice the difference, after one more week everything was almost perfect (and it is "almost perfect" today also - only if I search for it I am able to detect some waviness).  Nevertheless, my RS says that she believes in aggressive treatment, so I got my second shot last week and there is one more coming. I hope for the best (don't we all :)), although last week I had a bad surprise - quite accidentally they discovered another crack in my "better eye" too. Noone knows whether they just didn't see it before or it is just something very new. Anyway, I'd better start waiting for CNV there also.
Best luck to you!

[dukey]

Yeh this is a massive thread now! Glad it was of use.

[wwhmustaine]

Quick update:

I went back to my local RS Monday the 6th (4 days post-injection), and my right eye had improved to 20/35.  Then yesterday the 7th (5 days post-injection) I went to Emory Univ. in Atlanta, and it was down to 20/25+.  So in 5 days, it went from 20/50 down to 20/25+, and hopefully will improve even more. In a nutshell, the Avastin worked.  (Amazing that when the local guy gave it to me, he said that only 40% of patients who receive the injection notice any improvement. That may be the case for AMD, but obviously not for PM, in which at least one study has shown a mean improvement of three lines.)

The RS I saw yesterday at the Emory Eye Center, which is a top 10 facility, was by far the most knowledgeable I've seen to date, and he echoed the opinion of all 4 local specialists I've seen who said that there is no staphyloma. It'll be interesting to see what Dr. Ward says on Aug. 6 when I see him.

Also, thankfully, the Emory RS said that the left eye looks "great," that there's no crack there, no sign of one, etc.

[dukey]

Congrats, the success of Avastin in PM is much much higher than ARMD and usually only requires one injection. If you catch it early, you should reduce the chances of post-CNV scarring which is the real source of vision loss from CNV. There is some controversy as to whether Avastin can prevent this scarring but other factors such as original CNV size and location as well as the patients age are more important. Overall I think it looks good for you.

My feeling is that Lacquer cracks are no where near as dangerous now that Avastin is around, unless it passes right through your fovea and mechanically disrupts the vision. A few years ago with a subfoveal CNV, you would probably be down to 20/100 already and legal blindness in that eye would have been inevitable at some point.

I still think you have a staphyloma though. It is VERY rare to have myopic degeneration and not have one. Yours may not be too deep.  

[nickppatel]

Wouldn't it be easiest to just order a CT or MRI to detect the staphyloma if they're so hard to detect on clinical exam?

[jenmcn]

I've been diagnosed with myopic degenerataion in my right eye since last June when I first had symptoms. Have had multiple Avastin shots which brought me back to 20/20, now at 20/60 and had the laser treatment three weeks ago. I am also a lawyer, 39, and find it very interesting that in all the reseach on line, many of us, most of us it seems are lawyers who read every day.  My RS told me his daughter went from an anthropologist to lawyer so I could go to anthropologist when I complained about worrying how I was going to survive with this. He laughed, it was not funny.

[wwhmustaine]

Quick update - I just had my second post-injection follow-up: Back to 20/20, and -- for now -- stable. Since the injection was only 26 days ago, and it's supposed to be effective for 2-3 months (according to my RS, at least), then I'll be going back in about 4 weeks for another follow-up, to see if I need another injection.

Barring any unforeseen developments, I'm leaning toward NOT having another injection. If the first one worked (and it did), then in my opinion, there's no sense in receiving another shot if I don't need it.

Hopefully I won't need it.

[spookyluv]

I thought I posted a day or so ago but don't see it, I'm scheduled for the posterior pole buckling surgery Nov. 11 after consultation with Dr. Ward.  A bit, well, more than a bit -- nervous about it, but I feel pretty much OK with the decision in spite of the fact that my RS says don't do it, your vision is 20/25 now, why risk that?  Dr. Ward said with my axial length (and I have grade 3-4 staphy in right eye which is more degenerated than left and also longer than left) if my eyes were his he'd absolutely do this.  Also if I waited and didn't do this and wanted to do it later, and my husband lost his job and insurance, there is no way I could ever afford it, with insurance it's very affordable (for me).

I'm just apprehensive, really the only issue is my own fear and any risk, I really do think it's the right decision.  

Dukey, would you go through it again?

[dukey]

Yes, I would without hesitation. If you like, we can exchange e-mails and/or talk over the phone. I would be more than happy to help. Just send me a PM.

[dukey]

Great news! Super happy for you. I doubt you will need another injection and you are right to be hesitant.

[wwhmustaine]

One more update - I saw Dr. Ward yesterday. Turns out my right eye (the bad one) is 28.2 mm, whereas the left one is 27.3 mm. He said he "wasn't impressed" with the staphyloma in the right, and that it was "very shallow." He said my eye was oblong, not "torpedo-shaped," which apparently is a good thing. He recommended the procedure, but they're booked through Christmas, so I suspect I'll be arranging it for next year.

Both eyes still 20/20, no more bleeds.