Anybody else with Forster Fuchs' Retinal SPot

[staplers]

I use this site for info as it is the nearest I have been avle to find for the above condition - many of the symptoms are similar - has anyone had experience of Forster Fuchs'? I would REALLY like to talk to a fellow sufferer . The hospitals words after diagnosis were- Well nothing we can do best just get on with life!

[jayne1234 Macular Society]

Hi Staplers, I am writing from the Macular Society. We have very occassionally come across people with FF - but cannot put you in touch with anyone at this moment.However if you contact us on the Helpline Tel No: 0300 3030 111 we can offer you support, send you some information and put you in touch with other younger people with similar dystrophies. we also offer anyone with a macular condition who wishes to have it, free telephone counselling.

[Southcoastsmith]

Staplers,

I've belatedly come across your comments on the forum. I've also got a Forster Fuchs' Retinal Spot and was also told to just get on with it.

It was very difficult to find any information at first. I took a while before I realised it was liked to macular degeneration and from there to the Macular Society.

Even now, four years on, I'm still unclear about the retinal spot, even after I asked a consultant at one of the charity's events.

But, what I can say, is that the initial bleeding in my affected eye cleared after about two months. My eyesight in that eye has stayed unchanged since. That could be luck, it could be eating spinach twice a week or it could be about to get worse.

I don't think there's a simple answer but I certainly hope I don't get the same problem in my other eye because my damaged vision is annoying but has not changed my life.

It does seem strange, though, a condition which was identified in the late 19th century seems so hidden.

[CoAmA]

Hy, my mother has Forster Fuchs' Retinal Spot... do you know of any treatment?

[Hidden]

Hi staplers

From what I have gathered, short-sighted people are more prone to this condition. Are you shortsighted? There is quite interesting information available if you key in "Förster-Fuchs Retinal Spot - Patient Info".

The circular scar, caused by a bleed, will never go away as no scar ever does. It is important that any new neo-vascularisation should be watched very carefully and any possible further bleed should be avoided. But since clinics don't inject until there is a bleed or leakage - and I strongly believe that they should to avoid the risk of more damage - you are unfortunately not likely to get treatment. Whether or not the scar can be removed depends very much on its exact location on the retina. Clinics are not keen as a rule to entertain such operations, possibly because of the risk factors. So they prefer to leave well alone and tell you, the patient, to get on with it. Atrocious!

Maybe if or when the cheaper Avastin will be in more regular use, injections may be offered at earlier stages. It may be hoped so, because any condition can change so suddenly and rapidly and treatment may come too late.

I hope everything works out alright for you.

[StokeySue]

I have a Forster Fuchs spot in my right eye. It has been there for 30 years and hasn’t really changed. At the time I was told I could have laser fixation to stop it growing, but it was slightly more likely to shrink than expand, so we left well alone, and I think maybe it did shrink a bit, either that or I just got used to it. It completely removes central vision in my right eye.

The bleed was brief and self limiting, as it formed the FFS Scar tissue. The bleed was only apparent for about four weeks so pretty much gone by the time my retina was fully assessed. Both the consultant I saw then and my current ophthalmologist think it part of my myopic macular disease. The first one was surprised as I was 34 and my myopia not quite in the range at which she would have though it worth warning me

The other eye took nearly 25 years before the CNV cut in, FFS seems to be a one time only event for many people