Getting Worse

Havent posted for a while as everything seemed to be on the up. How wrong can you be when you have amd?

Had 12 Lucentis injections in my right eye a few years ago & the result was amazing. From the first one there was an improvement & the sight has been good apart from the grey blob from the dry amd creeping on.

The the left eye showed signs of wet so clinic started injections in that eye using Eyelea. Had the 9th injection 5 weeks ago & felt good as doctor said it was dry & if dry at my next appointment 3 months on i would not have an injection but would visit every 4 weeks from then on to keep monitoring. I asked why my distance vision was so bad now & short sight seemed to be having problems too. Doctor said the reading test & photos were good, so why is everything increasingly fuzzy? I can just about see without my glasses with a new lense that is supposed to help but doesnt seem to, just makes all a little bit less fuzzy.

Reading is no fun anymore & my Voluntary work is really suffering as i help process the donated books in a local charity shop. I have had to take steroids for a few months due to a kidney problem caused by pills for reflux but am gradually reducing these. Have been told that steroids can make cataracts worse faster so as i have cataracts too can this be what is causing the problem rather than the amd?

Has anyone else had anything like this happen? Any ideas or info appreciated please?

15 Replies

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  • I'm so sorry to hear that your vision is getting worse; I think it wears you down when it's one thing after another.

    I would take heart from the fact your doctors say the AMD is stable and the pictures good, although it doesn't help you when you're struggling to read, does it? A few people have described cataracts to me as an inability to focus on both long and near objects so maybe it is that, but I'm no expert. Perhaps you could call the Macular Society on Monday for some advice; I'm sure they would point you in the right direction or perhaps you could make an appointment with your GP or optician.

    Sometimes specialists only treat the thing for which you've been referred (the AMD) and anything new which crops up has to be referred again by your family doctor - sometimes to another consultant. Also, it's good to have a chat about your worries with your GP and hopefully she or he can explain what is happening to your vision and why.

    Good luck in sorting things out. x

  • Thanks Kalahuchi really helps to talk on here as we are all in a similar sort of state. Weekends are always worse for me in winter as its a time when everyone else is busy.

    My family are good & do try to understand but live a fair way away & with youngsters cant manage long conversations.

    So 'venting' on here helps especially when someone such as yourself takes time to talk & try to help.

    Will ty ringing Mac Soc monday & try to see my doc soon.

    Thanks again

  • That's ok cormorin, we're all in the same boat so understand how horrid it is to be going through all of this and it's good to get it out of your system. I't not easy when family live a fair distance away and phone conversations are often a bit too short to really get beyond passing on news and a bit of chit chat. Chin up and all that x

  • Hi cormorin

    It never ends, does it! So sorry to hear it. Certainly, cataracts will make your vision even more fuzzy. I have wet AMD in my L eye and dry in the R. When I asked why my vision in my R was almost as bad as in my L he just said - well the cataract in your R right is worse than in your L. No word of what might be done about it, nor did he tell me how much it was the cataract to blame and how much my dry AMD for my vision loss. Even though both eyes are monitored on a regular basis he never mentions my R eye. He is treating my L eye and that is what he concerns himself with. Unless my R eye turns to wet as well (sometimes I think it is at the brink of it) he will probably not mention it.

    Doctors often declare our vision good because we can read quite a few rows on the eye chart during a test. But that is just one distance under extremely bright light light. I no longer read the chart until I canont recognise the letters; I stop as soon as the fuzz makes reading unpleasant although I probably could manage another line. I do not think you can call it reading when bits of the letters are missing here and there although the brain still recognises them, partly guessing I suppose. That was, by the way, how I realized I had a problem with my eye sight. I could always read the short easy words, but with the longer and less used words I had to bring the book right up to my face. My eyes just could not see enough of the word for my brain to recognise it.

    Hope all goes well for you. x

  • What you describe sounds very similar to what i am getting right now. Getting told all is reasonable when you know it is not is very frustrating.

    I cannot fault our Consultant as he saved the sight in my right eye some years ago. The left is just so different now to the right.

    At least being able to talk to everyone on here makes me feel less alone.

    Many thanks for your reply. xx

  • me too. Within the same timeline as well. It sux

  • This is very frustrating I can imagine. I myself do not have AMD but instead DMO due to type 1 diabetes. I have had injections every month for the last 5 and a half years and completely understand what your saying. I call the sight that one sees in the clinic as ' clinical' vision not just because it takes place in the clinic but also under clinical and I think unrealistic circumstances . We read from a brightly lit chart ( if only the outsideworld was like that all the time!) . However the vision we use every day I call ' functional' vision because it is the vision we use all the time outside of the clinic. I am registered partially sighted but my clinical vision in my right does not really show how badly I really see My left eye is a different story I see almost nothing centrally in that one. The cateracts could be the problem I have those too. The RNIB EYE HEALTH TEAM are brilliant at answering such questions if you phone the RNIB they have practicing ophthalmologists who can answer your questions.

  • Hi thanks for your thoughts. We all seem to agree that the difference in the Clinic sight & everyday sight is something that we all experience. Wish the Doctors, no matter how good they are at their job would realise we are in the material world where sight is so different to their clinical view.

    Will give RNIB a ring tomorrow as i intend to ring Mac Soc & my GP too.

    Unfortunately there will be no chance of getting cataracts done now as we have been told these operations are on the list of cancelled ops along with my brothers hip operation.

    Thanks to everyone who has tried to help me, you all restore my faith in humanity. x

  • Sending a hug cormorin x

    Hope the RNIB etc are able to give you help. 're the cancelled cataract ops - is that just at your hospital? Under NHS Choose & Book you can have ops or other procedures done elsewhere. Speak to your gp about it.

    Interesting to hear what people think about the eyechart test. I have always strained to see as much as poss and I do say "might be" when not sure if brain is filling in shape but I think I will take a leaf out of ayayahs book from now on as I completely agree with tallyho, vision in the "real world" is entirely different.

    Best of luck cormorin x

  • Last year, I had a cataract operation in my good eye and the difference in my distance vision is amazing - no longer shortsighted with my good eye as I had been since a teenager but obviously now need a strong reading lens prescription (feel blessed). My right eye is scarred from myopic macular degeneration despite injections and I cannot see any detail with it - I also have a cataract in that eye and wear an increasingly strong contact lens to help the balance between the two eyes and improve my peripheral vision.

    I was very fortunate that my NHS doctor at the macular clinic was willing to fast track me to the cataract clinic, hence only a 12 week wait - we discussed the risks thoroughly e.g. If it went wrong, I would have 2 bad eyes, etc. She said if it went well, we could then arrange to have the other cataract done to achieve the same effect as my contact lens does. Now 6months on, that doctor has left and the doctor I saw last week at the macular clinic said he would be willing to refer me but to take more time and discuss it with my optometrist at the opticians and get back in touch when I felt ready and willing to take the increased risk. In my opinion, as I have no central vision in that eye, it's worth the risk anyway and all agree that the cataract surgeon is one of the best in the country. This doctor also discharged me from the macular clinic as he said I hadn't needed an injection for over a year (well that's because the damage is done and injections cannot make an improvement) and said they had my notes if I needed to be referred in future. As my optometrist monitors me closely, I'm not too concerned but wondered if the eye clinic is trying to make its list look shorter?! Wonder if the Macular Society has an opinion on that - should I continue to be monitored at 3or 6monthly intervals?

    But...this response wasn't supposed to be about me (!) - Cormorin, I would discuss the cataract further as anything to improve already poor vision is worth it. It's not till the cataract has gone that you realise how much it dims and distorts your world on top of already damaged vision.

    PS. I too stopped trying to read or rather work out the letters and words on the chart. I would say with the big letters "well I can see a point at the top and another pointy bit at the bottom so I guess it's an N" and the nurse would count it as a letter seen when I could only see part of it with my peripheral vision!

    Good luck, Cormorin though good treatment shouldn't be down to luck x

  • Thanks for your good wishes. At least i know i am not alone as i was told some time ago that the cataract could be dealt with but not just yet.

    Think I am going to give up trying so hard to read as many letters as possible as it does not seem to be doing any of us any good.

    I am making some calls tomorrow to see what i can get done, at least if i see someone that will be a bit more reassuring if told it can just be the cataract worsened by the steroids as one doctor said.

    So onwards & upwards i hope.

  • ps the cutting of some operations may just be at our local hospitals as both are going through some rough times. Not the Doctors & Nurses who are excellent, as I have said before on here our Consultant is my hero for helping save my sight in my right eye years ago. Hopefully they may get through this soon.

  • Dear cormorin,

    It would be worth ringing your ophthalmologist's secretary and posing your questions to them, particularly with regard to the current impact of your cataracts.

    I am copying the link to our cataracts factsheet below:

    macularsociety.org/sites/de...

    In terms of spectacles, whilst sight is relatively good, then individuals can generally manage with varifocals or bifocals if preferred. However, if there becomes any noticeable impact to sight, then generally single vision lenses are preferable; separate for close up and distance vision.

    Please do not hesitate to contact the Macular Society helpline for further discussion. Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

    Kind regards,

  • Hi Rosalynn thanks for that will check the factsheet.

    Rang the Eye Clinic & earliest i can be seen is Sat 8.40 so grabbed that & will sleep on my son's couch to get there that early.

    Will be worth it to at least find out what is going on.

    Thanks again.

  • Hi to all who helped calm me down with their comments. Big Thanks to you all!

    Had a check up today after talking to a Nurse at the Clinic who said i should make an appointment. Very glad that i did as the Doctor i saw was very reassuring that there is no major problem except for the effect that the steroids i have been taking for a kidney problem caused by capsules for reflux have had.

    He said that with luck this may settle & stop affecting my vision but there is also the problem that steroids cause on cataracts. Hopefully if the wet amd is under control & dry next appointment i will not need an injection (yippee) & the cataract in that eye will be monitered & possibly dealt with. That i can live with if i can keep my sight as long as possible.

    Still scary but not so much now so hopefully can stop snapping everyones heads off when i go to my bit of Volunteering tomorrow Lol!!

    Again thanks for being so nice on here, so glad we have this to try to help each other, big hugs to you all!

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