Drusen and very early macular degeneration

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A posterior vitreous detachment occurred in my right eye two weeks ago. I was told by Southampton General Emergency Eye Clinic that it was age related and to go home. Not happy with this decision I decided on a second opinion at the local opticians who offered OCT scanning. It was picked up I had fluid filled cysts in the macular area of both eyes suggestive of "drusen" and early signs of macular degeneration. I'm really surprised it wasn't picked up two weeks earlier on my visit to Eye A&E. I'm due to visit the gp tomorrow and will take the scan and letter to show her. As I have a choice of hospitals to visit, does anyone recommend Southampton? I'm actually drawn to going to Moorfields, London. That's only because I worked Agency there in the 80's. I'm keen to hear from others who have these conditions, and if poss, has anyone used Moorfields?

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  • Posted

    Hi

    I am in my 30s and in January I was diagnosed with Drusen. 2 years befor this I was referred by the optician to Salisbury District Hosptial. The opthomologist said "put it down to something that happened during your pregnancy". I left feeling extremely deflated and that I had wasted their time.

    I was then referred last October and after several tests, CT scans, lumbar puncture it was diagnosed with Drusen. The locum doctor I saw was very nice but quite vague. I asked if there was any literature I could have. He said it was quite rare and the best thing I could do was become my own expert and research on the internet.

    I have spent several hours trawling the net and found very "wordy" documents. I did find through specsavers a very useful fact sheet on Drusen.

    I was told I have to go for sight tests every year as well as scans at the hospital. They will judge my level of deterriation based on my field of vision tests. At some point I have been told I will be registered partially sighted.

    I feel there are still lots of unanswered questions and a lot of "maybes" attached to this condition!

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    • Posted

      Wow...I'm amazed at the thought your opthomologist thought it related to your pregnancy. Was he grasping at straws I wonder. How odd!! Now correct me if I'm wrong, but I thought a lumbar puncture is performed for diagnosis of brain bleeds, meningitis, etc? A CT scan...was this taken of the eye? Don't you just hate it when drs palm you off with "check it on google!!". For goodness sake, refer you to a specialist instead!! 

      Thank you for recommending specsavers' fact sheet.

      You don't sound confident about the advice given. Has it affected your sight already? Mine hasn't as yet.

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    • Posted

      I accepted the pregnancy idea as I had just given birth and was hardly awake to listen, it was only when I had my eye test again the optician wanted to refer me back.

      I had a CT scan to view the drusen as it shows the calcified area. I also had an ultrasound of the eye which confirmed the drusen. The lumbar puncture was done to rule out a neurologist issue and to test the pressure in my spinal cord. It ruled out a brain problem rather than an optic nerve issue.

      If I referred to google on all health issues a possible side effect is death! When I mentioned this to the Dr he just chuckled!

      I do believe my peripheral vision is deteriorate as I am often bumping in to things and not spatially aware. I do wonder if I am thinking too much into it though..... I have been given an estimation time span of up to 20 years before I lose my peripheral vision. But will be registered partially sighted before this . I was also told the condition would not stabilise it would stay at its gradual rate of decline or worsen.

      It is important to get regular tests to rule out bleeds on the nerve as this can kill them off completely and you can lose your sign altogether.

      Can I ask if you MD is related at all to the drusen?

      Were you given any additional advice on the issue?

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    • Posted

      Yes it seems my drusen is linked to MD as there are retinal cysts in the macular area. As I've only learnt this today, I've yet to be checked by the opthamology team. It's all an education and a scare. 

      Wow all those tests you had! Very interesting about the lumbar puncture test for pressure in spinal fluid!! I'm going to ask for one, as in the past, I've had hydrocephalus from a brain bleed. The blood clogged up the ventricles in my brain increasing my spinal fluid and destroying nerve and neurons. Have always felt a shunt would have been useful for drainage. Thank you so much for telling me what you've endured. Have you not considered a second opinion at the Moorfields Eye Hospital, London? They're at the cutting edge of eye medicine/surgery.

      Thanks for replying to my post...you've given me food for thought!!

       

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  • Posted

    Moorfields is supposed to be the best, so I would go there.

    I used to go to Southampton Eye Hospital in the 80s and at that time, it was excellent but it has obviously closed down and moved to the General.

    I no longer live in the area.

     

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    • Posted

      Thank you for that. I worked part-time at the General recently and have been a patient in the past. I was not impressed as a patient!! I called Eye Outpatients this afternoon to question their "record and reviews" as I couldn't really find them online, and was told that their Consultants had all been trained at Moorfields. They have all the up-to-date tech/medical/expertise available, although Moorfields I remember being "tops". Will give Southampton a go and if little joy will ask for referral to M!
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  • Posted

    Jane

    Give southampton Eye Hospital a wide berth. Every time they did something to my eye, they made it worse. I have been going there for 5 years, because I haveMacular degeneration. But every time they did any procedure, my eye started being painful. They have now removed a cataract, and damaged my eye. I have been back so many times. I cannot go outside at all. The air is just so painful to it. I have not been out all winter, and connot even bear to open the freezer. We are now thinking I cannot bear another winter like this, with not going out, and may have to move to a warmer country. I am heartbroken. I have never even been on an aeroplane, and am terrified to fly, but my eye is obviously permanently damaged. When the optician referred me to southampton eye unit, my eye felt fine, my vision did not feel impaired at all. They have ruined my life, and I no longer trust any of the specialists there. On top of that they mix up appointments, and dont send them when they should. They just have more patients than they can cope with. Hence no-one gets proper attention, and they make mistakes.

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    • Posted

      Thanks Bumblebea...I think you're right so I'm being referred to Nth Hants as I wasn't impressed myself. One thing; I'm very hot on "professionalism" - that inspires confidence in me - and I didn't find so much of it in Southampton. 

      Sorry to hear about your damaged eye. I quite agree if you can, move abroad asap! Not only for sunshine but to get away from a Britain that is changing for the worse. I'm so fed up with how depressing it all feels!

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