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?

[wwhmustaine]

Good luck, Shannabana. Latest on my case: No changes, thankfully. I'm still 20/20, notwithstanding the distortions, blind spots, etc. My prescription has actually improved from -8.5 to -7.5 in my right eye, and from -7.5 to -7.0 in my left. Still hoping that treatment options improve in the future, though.

[John C Hagan III, MD, FACS, FAAO]

Thanks for the follow up

[Shannabana]

I've had my first cnv due to myopic macular degeneration 4 weeks ago. I am 39 years old, married mom to 5 kids aged 1 - 10. I received an avastin injection 3 weeks ago and it did help but I still see the gray spot on the Amsler grid. I am looking for encouragement really and updates on everybody. This has been the hardest trial of my life.

[wwhmustaine]

Thanks very much. Turns out, the change was a CNV, as the blind spot decreased over the next few weeks. At 46 years old, I still have a long way to go. My biggest hope is that at some point in the future a "cure" is developed.

[michaelprescottmacarthur]

I know that I'm late to this party but I'm going to say a few things.
first of all, don't give up hope. I am a 45 year old that was diagnosed with
macular degeneration at 42 years old. I also have been a practicing Registered Nurse since 1999. I've had to compensate some when using my technical skills, but overall things are still going ok. I receive Avastin
in each eye approx. every 30 days per eye. so it's a trip to the Eye doc every 2-3 weeks. Still going strong. this Former Army Combat Medic and Nurse is not giving up that's for sure.
Hang in there sir.
sincerely,
Michael Prescott MacArthur
RN

[wwhmustaine]

Here we go again. After having no real problems since my last CNV/Avastin injection in May 2010, I noticed an increase in the size of a blind spot in Friday, September 19. On September 23 I went to my RS and got another injection of Avastin. (This is my 3rd since being diagnosed in May of 2009.) We'll see if it helps, or if the increased blind spot is a permanent change. The RS seems to think this was a CNV, because even though he could see any bleeds himself, the OCT seemed to pick up.

Still no problems at all in the left eye. Also, even as of yesterday, was 20/20 -1 in the right (bad) eye.

So the bottom line is that almost 5 years after the surgery, I'm still doing well, ASSUMING this latest setback was simply a CNV that will be dried up by the Avastin.

We shall see,

[srilatha37]

Hi,

I have very high myopia -14 d in both eyes. I see wavy in both eyes. My right was good until 2 months ago, it also started wavyness. My RS said treatment is not going to help me. I assume its dry. Does posterior buckle surgery will prevent further dry macular degeneration? How is your vision with waviness? I am a pharmacist, afraid whether I would be able to work if waviness gets worse also I read a lot . Do you mind sharing your experience how waviness affects daily tasks . I had a CNV in left eye in march 2013, one avastin shot cleared the leak, But i still have waviness in left .M vision is 20/20. Thank you
Sri.

[KKinTX]

well, i went to my RS about what seemed like an increase in floaters and he said there was nothing.  no changes since i last saw him 4 years ago and that i didn't need to see him anymore unless something happened.  just see my regular eyeMD once a year.  

unfortunately 10 days ago something did happen.  i had leakage from a CNV that was near my lacquer crack.  the distorted area on an amsler is about the size of a penny or nickel.  he gave me a shot of avastin on thursday.  

really frustrated that there is such a lack of information.  my rs didn't talk to me very much but i heard what he was telling his assistant to write on my chart--peripapillary choroidal atrophy and i think retinal pigment epithelium atrophy.  the lacquer crack was discovered about 4 years ago when i noticed a very small blind spot in the se quadrant of my vision.  the new blind spot and distortion are in the nw quadrant of my vision.

also frustrated because i can't seem to find a doc that specializes in high myopes where i live here in TX

[KKinTX]

now you all have me scared.  I just generally trust the docs.  I don't seek out specialists.  I had a blind spot about 3 years and went to see the opthamologist who sent me to an RS.  I have always seen opthamologists.  I have worn glasses since age 4.  my eyes are OD -12 and OS -15.5 with astigmatism in both (+.75 and +1.25 respectively).  I wear gas perm lenses.  The RS found lacquer cracks in one eye but no cnv.  I haven't been back to the RS since that diagnosis.  Lately I've been seeing a lot more floaters than normal.  To the point that i have to wait for them to move so I can see sometimes.  thinking it might be time to go back to the RS...

[wwhmustaine]

It was a CNV.

I had an injection of Avastin yesterday (my second one, the first being 10 months ago), so hopefully this will rectify things.

Still 20/20, so they (we) hopefully caught it early enough to prevent any permanent damage.

[wwhmustaine]

Another setback.

Blind spot became more noticeable a few weeks ago, went to see RS on April 14, and since they didn't see anything (and I was still 20/20 or so), I was told they couldn't give me an injection of Avastin.

Since then, the distortions have increased even more, and I have an appt. tomorrow to see about getting that injection. My fear is that he'll refuse to do if he doesn't see a CNV, even though I know that things are getting worse.

Hard to know the cause and effect, but I'm starting to wish I didn't get the surgery with Dr. Ward in January. Everything was fine up until that point, and now this.

[wwhmustaine]

It's been a while, so here's the latest:

On January 6, I underwent surgery (posterior pole buckle) in San Jose, CA, performed by Dr. Brian Ward.  Dukey has posted his experience with the surgery in detail, so I won't retread that same ground, but I will say that I'm glad I did it.

I'm currently almost 4 weeks post-op. A day after the surgery, I was 20/50, a week later, I was 20/30, and at 3 weeks post-op, I was back to 20/20 (minus 2 letters, but I'm wearing contacts with an eleven year old prescription).

I still have double vision, though it seems to be improving gradually. Also, the eye is still pretty red, though again, this appears to be getting better.  No more pain, though, as that was gone within about a week or so.  You have a pretty bad black eye at first, and there is a lot of discharge, but that goes away after a few days.

Like dukey, I had the surgery on a Wednesday, and after follow ups on Thursday and Friday morning, I flew out Friday afternoon, and was back at work on Monday. I will say this, though: I probably shouldn't have driven until at least a week post-surgery, as the double vision was pretty bad until then. Also, you can't wear contacts for 2 weeks after the surgery, so that compounded the issue as well.  You're supposed to sleep and shower with a patch (or tape) as well, which isn't very convenient or comfortable. On top of that, you can't exercise for 2 weeks, so by the time I started running again (17 days post-surgery) I was somewhat out of shape, not to mention still feeling the effects of the operation.

As far as the procedure itself, I checked in at 5:30, surgery was at 7:30, and I was back at the hotel at 11:00. The rest of that day is a blur, though, as the Darvocet knocked me out and made me nauseous. I stopped taking it that day. I had almost no appetite for about 4 or 5 days after the surgery, which I think is the result of the anesthesia and meds.

Anyway, all in all, it was pretty much what I expected. Insurance covered the hospital charges ($51k +) and doctor's charges, though unbeknownst to me, it did NOT cover the anesthesiologist's charges, which were about $1,000, so I'll be coming out of pocket for those.

And while I'm glad to be doing well, I can't say I hope to ever need the other eye operated on.

[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.

[dukey]

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

[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.

[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?

[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.

[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.

[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?

[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.  

[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]

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

[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]

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.  

[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