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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?
1 like, 9 replies
harrythecat
Posted
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.
macilrae
Posted
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.
bagladyNYC macilrae
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macilrae
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bagladyNYC macilrae
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macilrae bagladyNYC
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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.
bagladyNYC macilrae
Posted
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.
macilrae
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bagladyNYC macilrae
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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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