Macular hole - do you have visual problems befoe the hole appears?

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18 months ago I started getting blurry central vision in both eyes at the same time - it wasn't there all the time but when it was happening I found it very hard to do fine work.

I saw an ophthalmologist who did an OCT and retinal exam and found nothing. He suggested it was neurological so I had an MRI of my brain and orbits but nothing was found to explain the problem.

In the last three months I found that the problem had become permanent in my right eye - I could now see a faint central ring that pulsated with my heartbeat on that side. I went back to the ophthalmologist and he diagnosed a stage one macular hole. He didn't think the previous loss of vision was connected to this. He has advised me to wait and see if it gets worse but I am considering doing the surgery anyway - maybe trying the new drug Jetreap first which is very expensive but which is said to help a small number of patients.

Has anybody had a similar experience - with the visual loss coming and going? Anybody tried or considered trying Jetreap?

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  • Posted

    Next week I am about to attend a pre-operative assessment for a macular hole. The condition started in my right eye last year (blurry vision) and I thought it was a cataract as my mother and other family members have had this condition. I wished I had not made this assumption.

    In April I made a doctor's appointment and as he could not see anything wrong he advised me to visit my optician the next day, which I did. Describing the symptoms like yours (a central disc had now appeared) to my optician, she immediately wrote a letter to take back to my doctor at his practice so that he could make contact with the nearest eye hospital. 3 appointments later at the eye hospital, and 3 months later, I hope surgery will happen soon. The assessment by the surgeon is that my eye will not get better and the best outcome is that the eye condition will stabilise.

    I wish I had acted sooner in seeing the professional who knew about macular holes. My blurry vision has been constant I think in my right eye, but the left eye has compensated so it is hard to know if the visual loss came and went in the early stages. I have not heard of Jetreap, and nobody has mentioned this to me over the last 3 months. I think it is imperative to seek further advice if you are now seeing a central ring.

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  • Posted

    Hi Harry. Thanks for the comments - what is interesting for me is that once you had the macular hole confirmed they proposed your surgery fairly soon thereafter - my ophthalmologist wants to wait and see if it gets any worse before operating. Like you I thought my problem was cataract initially.

    JETREA (sorry for the typo before) is the trade name for ocriplasmin which is now approved (earlier this year in both Europe and the USA) for direct injection into the eye - it is claimed to be able to dissolve the adhesions which pull on the macula and cause the damage - it is said to work in about 20% of cases, it is used for smaller holes and there are some other conditions which have to be met before this action can be taken. I live in Canada but could get it in either the US or in UK - cost is over $3,000 for one injection!

    I see there is one ophthalmologist who offers the repair without the need for the two weeks (and more) of lying face down - his name is Paul E. Tornambe but he lists a number of doctors who also use his method (basically, do a cataract operation first because it will become necessary after the vitrectomy anyway - and put a very large bubble of gas in the eye so that the macula is in contact with gas even when you are standing) - you might want to question your doctor on this.

    Good luck - please post your experiences here and I shall do the same.

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  • Posted

    Sounds like you really need to see a retinal specialist. I have wet mac in one eye and dry in the other (doc now says dry continues, so still have it in the left eye). Even though I had symptoms of mac, he didn't see anything except a little black line. I was seeing very very wavy lines, a gray and sometimes black ball in my central vision--then blurry vision in a spot in that eye. Sometimes I would even see a blank spot. You can print off an Amsler Grid from the Internet. If any of the lines are crooked, blank sections, a black ball (look through your reading glasses), something is wrong with the macula. I saw this for MONTHS before my ophthlmologist saw two cysts on the macula. Yesterday he said he saw nothing wrong with the test on the right eye. Not happy.
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  • Posted

    Just to update my original posting. As most of you know, macular holes are caused when the membrane which separates the vitreous from the macula pulls on the macula because the vitreous is contracting with age (60+ usually) - the hole is formed because a portion of macula is torn away.  In my case the pull had not yet detatched a bit of macula - just stretched it away from its bed and formed a void behind. As I'd mentioned, I was getting central blurring off and on in one eye and a nasty distortion and continuous blurring in the other. I have been extremely lucky - both membranes have now detatched from the maculas without damage and I am back to seeing as before. The intermittent blurring, which no retina specialist could explain, has now vanished.
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  • Posted

    Interestubg, Wonderful that your vision is back to normal.
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    • Posted

      Hello Yvonne. I think you are referring to wet/dry macular degeneration. As I am sure you know macular holes and cysts aren't necessarily related to that condition.  Your experience with the ophthalmologist is similar to mine and, in fact, the symptoms you describe are also similar. I think you must have had an OCT scan to see those cysts? They could be caused by the vitreous pulling on your macula and causing it to 'delaminate' whereupon voids open up within the layered structure and ophthalmologists call those 'cysts' which, loosely described, they are. What is important is that your 'cysts' have not developed into tears of the macular surface and you have a good chance of your vitreous separating and releasing the macula. I too had a distorted Amsler chart (right eye only - in the centre) but after the vitreous separated it went away. I've posted the before during and after OCTs for your possible interest. While the traction was on (pulling) I saw all kinds of weird and nasty effects in that eye - a pulsating blob, a black blob when I looked at a blue background, missing detail, blurriness of course and the Amsler distortion.

      One thing to consider is "how big is the remaining area of contact between your vitreous and the macula?" if it's small (you can see it on the OCT) there is a better chance of recovery and a better chance, too, for Jetrea to work.

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  • Posted

    Yes. The ophthalmoloist showed me the scan and pointed to the two cysts. Sent me next door to a retinal specialist who took his own scans and then shot my left eye with Avastin. This was in April. He told me I would have a shot every month for four months. I chose to go to their other office because it was closer, but had a different retinal specialist. He had another scan taken. Said it looked good and I would not have another shot unless he saw problems. ?  So far, no more shots, but I can tell that eye is getting worse. It is now July. The tech had told me that the distortion would continue. True. Now I see very slightly crooked lines with my right eye on the Amsler Grid. I'm getting mixed information. I was told in the beginning that I should take special vitamins for my good eye that had only dry mac--that vitamins did not help once an eye went wet. Then I was told that you always have dry mac--that it does not go away when it goes wet!!! I needed to take those vitamins!! I believe the name of what I have is called Choroidal neovascularization. My ophthalmologist read it from a letter from the 2nd retinal specialist, who I will continue to use. I could be wrong, as I did not write it down. Looked it up on the Internet.

    I was under the impression that vitamins no longer did any good after the mac went wet. I thought the shots kept it from getting worse. Now I am told the dry mac continues to make your vision go down. It seems to me that all those shots do is stop the bleeding yet I have a friend who has been getting a shot in both her "wet mac" eyes for the past two years. And they have said the vitamins only effect 25% of the patients.

    In the meantime, I'm going to have to stop drinking Almondmilk because 2 cups gives you 100% of the daily allowance of Vitamin E and the Vitamin E in the AREDS2 formula also gives 100% of the daily allowance. Not good to OD on Vitamin E.

    Glad to hear from you and read your remarks.

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  • Posted

    Hello Yvonne. You are obviously an articulate person - you need to understand, through that ophthalmologist, what he means by "looks good" exactly! Are the cysts due to the macular degeneration or are they due the vitreal traction - or indeed some other mechanism? Surely you will have all of the symptoms you describe if there are cysts there because they will cause your retina to bulge but what is causing them? If it's traction there are things that can be done.
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  • Posted

    The retinal doc said he was waiting. Said this may never happen again, but chances are, it will. Yes. I need to pin him down. I find it odd that I was given one shot only. I'm being told something different about the treatment every time I go to his office.

    I had previously had two cataract surgeries and still could not read street signs. That is when my ophthalmologist first sent me to the retinal specialist who diagnosed my problems as dry mac. This was about two years after being put on Tamoxifen, which I took for five years and only recently discovered it could cause "retinal changes." All docs say this is age-related, but I wonder if the Tamoxifen didn't have something to do with it. I will see him again on the 28th with my list of questions.

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