Different consultants= different diagnoses

Edited , 4 users are following.

Hello

At my last visit to the NHS eye clinic the letter I was CC'd in on gave the diagnosis of a stable glaucoma suspects after my OCT scan, the letter before this described me as having pre-perimetric glaucoma. I have subsequently have a a telephone consultation a month a go (due to covid) and had a good chat with the doctor (for once) i was told yes there was nerve damage but not enough to cause problems and no progression, my visual fields always fine, although not as good in my right eyes as my left (which has no damage). I told her about how worried I was and the the thought of vision loss is causing me anxiety and loss of sleep. I was told there is nothing to worry about, I'm only being treated as I'm young, if I was older they'd just monitor me and it is unlikely i'd lose any vision or be confirmed as having glaucoma anytime soon. So what do I receive today, a letter to my GP telling them that I have glaucoma in my right eye!

I can't believe this and have been in tears. I can't understand what has happened. How can I be told all of these things and then receive that letter? Also, don't they check the previous letters to make sure they are being consistent? And how can they move me from a suspect to confirmed without even doing any new tests? This is on top of my highstreet optician telling me he can't see any evidence of glaucoma, now my pressures have been lowered.

I'm so confused, has anyone else every had issues like this?

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  • Edited

    Hi Jim, If I were you and felt like you do about being nervous because of the letter to your GP, I would call your ophthomologist back and ask them about the letter's content. Is it the fact that you feel like you don't have glaucoma after your telehealth doctor led you to believe that since you are young, you don't need to worry about your condition? I'm a bit confused about what you are anxious about. I was diagnosed with glaucoma in my late 40's, have used medicated eye drops, then a course of laser treatments to bring down the pressure, along with regular 6 month apart appointments along the way to keep a watch on the pressures. All was going along okay until my cataracts needed to come off in 2016 and my eye pressure starting going up over 30 even with the drops. My ophthomologist told me it was probably time to do the glaucoma surgery along with the cataract removal, one eye at a time, about six months apart. I can tell you Jim, I was a bit apprehensive then, but after that I no longer use medicated eye drops, just use Refresh Optive over-the-counter daily to keep my eyes from getting too dry. I can tell the difference after I use those drops and they feel much better. You are young, you say, and so you will just probably go along with your regular NIH visits to keep a watch on the pressure, but I assure you that you are probably getting overly anxious because of what the doctor is calling it. That's why I think you will feel much better if you talk to your specialist and ask him about the two different diagnoses, one he is telling you and one he is telling your GP. Since this is all new and scary to you right now, it sounds like you need to get more information from your specialist to feel more at ease. Whenever we think about losing our eye sight, it is very frightening and you are not alone in your anxiety. In the early stages, glaucoma is pretty much controlled with medicated eye pressure drops. I believe you will feel better after talking to your ophthmologist to clear a few things up. Good luck!

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    • Posted

      That's a very unhelpful reply, if you can't answer my question then why bother replying? How is your history of medication and surgery in any way relevant to what I have asked?

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    • Edited

      hi... as a glaucoma suspect myself, I can understand your frustration and anxiety... However, no one can answer your question reliably in this forum. The person who has taken the time to write to you have shared her story in my view... that's what we do here... compare notes and also support each other...

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    • Posted

      THANK YOU may26103 for your response! I was thinking that was a very rude response to my post to Jim872672. As you mentioned, I was only sharing my own history with glaucoma hoping that it would give "Jim" some sense of comparing notes and that his anxiety and worry might become lessened by reaching out again to his specialist to get more clarity. I am a firm believer that the more I know about some illness or disease, the less I become agitated with the thought of it. Sometimes it helps to know you "are not in that boat alone".

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    • Posted

      Glaucoma surgery can be anything from laser treatments to the actual surgery of adding what is called a "bleb" physically in your eye which helps the fluid drain out of the eye which in turn keeps the pressure down. I am not exactly sure how it works, but I know it has been very effective in keeping my pressures down to 14 or so since I've had it done four years ago. And I no longer have to use medicated eye drops. I just use REFRESH Optive moistening drops a few times a day which I was told would help the "bleb" work better. Good luck with your treatments! Thanks again for your response below. You made my day!

      Sharon

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    • Posted

      no worries... everyone deals differently... I have found the support of this forum to be quite positive... people who take the time for complete strangers to share notes and encouragement

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