So I realise this is going to be abit of a rant/pity party for one but reading the posts and opinions of all you lovely people always makes me feel better and I feel like I need to get everything off my chest. So sorry in advance! 😆
Long story short I had the Ozurdex steroid implant put in my eye in February in a last ditch attempt to recover some of my central vision. (I lost my central vision due to having proton beam radiotherapy for an occular melanoma about 3/4 years ago. I'm 27 now and forever grateful for the brilliant care I received going through that.) Having already tried the injections to no avail I didn't hold much hope in the implant but as it was offered to me I thought what do I have to lose?
Ive had a very rocky few months starting with my eye pressure shooting up to over 60 after having the implant. I was warned this might be a side effect but unfortunately this wasn't found until a month after having the implant putting us in march. The hospital that put the implant in must of made a mistake and didn't make me a check up appointment instead just said they would see me in 6 months. Luckily I go to two different hospitals and the very high pressure was found in march by the other one by chance.
Since then the hospital have been battling to keep the pressure down while the implant dissolves I had to be on acetazolamide tablets 4 times a day and two different types of drops numerous times a day. The side effects from the tablets made me feel rotten (apparently they are notoriously bad) and I was getting bad headaches from the pressure.
Finally at the beginning of this month the pressure had begun to stay down and I was able to be slowly taken off the tablets and left taking just one of the drops twice daily. Some good news atleast but about 5 weeks ago I also started with severe anxiety and panics attacks effecting me almost daily (I've never experienced anxiety before and i truly believe this must be a side effect of the steroid implant coming to an end)
I've been going to my local hospital over this last month for pressure checks just to make sure the pressure is staying down and have let them know of my anxiety issues (although I realise there isn't alot that can be done and it is just a case of waiting for the implant to dissolve)
Today I had one of these check up appointments and was put in with a doctor I don't usually see and ive honestly never felt so deflated leaving an appointment. Firstly he spoke to me as if I was making things up! I explained I've not been feeling well etc. And his only reply was "well the implant shouldn't be there now so" to which is explained the implant is still there because I've been able to see it and how much dissolves off it every single day since it was put in! He found this hard to believe and so checked for himself and of course there the implant was. Still not much to say other than get better soon we'll see you in 4 months. I had some MRI results due so before I left asked if he could tell me what they were. (I go for 6 monthly liver ultrasounds that are organised by the hospital I got my cancer treated at because if the cancer was to develop secondaries the liver is where they would go and my last ultrasound showed something hence having to have an MRI) Anyway he told me the results were fine and it was a benign nodule on my liver nothing to worry about thankfully! But then he proceeded to ask me why I go for these scans - when I explained to him I was met with a lecture insinuating that I am wasting the NHS's time and I don't need to be going for these scans and basically making me out to be a hypochondriac! I never asked for these scans they were recommended to me!
I came home after my appointment and cried my eyes out! Feeling very deflated and low. I feel as if because I've said I'm suffering with anxiety all of a sudden I'm making things up and being made out to be a hypochondriac. I'm never one to complain infact I don't think I've ever complained since I started my NHS journey! I'm a very strong person but these past 4 months have been some of the hardest in my life (worse than finding out I had cancer!) and this doctor today has made me feel small and worthless.
I don't know what I'm expecting from this post but I just needed to vent and would love to hear from any of you if any one has experienced anything similar or has advice? Thank you for reading I really appreciate it and sorry for such a huge rant ♥️
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Eyerecovery1
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Sorry for all you have been thru and also for anyone doubting you I saw on here about 2 months ago that some people were helped with their vision by taking cbd oil so I asked my eye dr if I could take it he said by all means yes so I went and bought plus cbd oil gel caps and started taking once a day it hasn’t helped my vision that I have noticed but I have ptsd and it has helped my anxiety tremendously so maybe try cbd oil for your anxiety it sure is a miracle worker for mine good luck to you 🙏🏻❤️
Thank you for the kind message! I needed to hear some kind words today.
I will definitely have a look into CBD oil! Anxiety is something fairly new to me and I have to admit it's really knocked me! I've been using lavender oil, drinking herbal teas and trying lots of other bits and bobs in hopes of easing it. I just hope that once the implant has finally dissolved that all this goes with it! It has completely opened my eyes to the suffering people go through with anxiety.
Sometimes having a rant is all you can do. I know nothing about having implants but I do know that some Doctors whilst clever have absolutely no idea at all how to communicate and I have like you been left totally flat and in despair. You are clearly not a hypochondriac and the tone of your post shows you haven’t lost your zing for life you have just had a hard knock. Be kind to yourself and take a breath. I was once told that 93% of the things we worry about never happen and the other 7% we learn to deal with. You will be ok and you are not alone there are lots of us here.
Thank you very much for taking the time to reply 🤗 Again I needed to hear some kind words today and reading this message has uplifted my spirits a great deal! It's so nice to be supported by a community who go through similar things so glad I came across this forum. My dad always says be kind to yourself when your feeling down. Thank you again for the lovely words!
Sending you a big hug X so much for you to be dealing with! What a poor Dr he was - communication is such a huge part of Dr/ pt relations. He's an eye doc, why does he think he can comment on anything else?! Especially when you were told to have the scans. And the eye dept let you down by not seeing you 4 weeks after the implant!!! Ooh, I might have had words with him lol
I have the ozurdex implants and had raised iop each time but not as bad as yours. At least it sounds like its under control now. Didn't get the anxiety - definitely be kind to yourself, it sounds awful. Find something that makes you happy and focus on that while you wait for the implant to dissolve - go to your gp if you need talking therapy or meds in the meantime.
I hope you at least get some improvement x wishing you all the best going forwards x
Thank you for the reply! This is exactly what I thought! This particular doctor has made a few mistakes (which I haven't complained about because I always talk myself out of it saying everyone makes mistakes!) But after his horrible lecture at me insinuating I'm draining the NHS's resources by having liver scans ive been sent for (by cancer specialists!) I left thinking why have I been silent and let people talk to me like that! I wish doctors knew how important communicating was! You get some lovely doctors and others are just plain arrogant. I just think alittle bit of understanding goes a long way. That doctor has no idea what I've been through the last 5 months and I felt like he truly didn't care!
I think the reason the pressure got so bad was because it was left for so long after I'd had it put in. At the time though I didn't realise this wasn't normal practice til another doctor told me I should of been checked sooner. Thankful that the pressure is under control now atleast. The anxiety has been crippling! I've never ever experienced anything like this. I've felt like a completely different person! But after researching the type of steroid inside the implant apparently it's a common side effect of it - funny how it isn't in the side effects for the implant though. Unfortunately normally the steroid would be in oral form so they would just get the patient to stop taking it but mine is inside my eye! So I need to just wait it out. Every single day I wake up I hope that it's gone. Can't believe it's still going! It will be 5 months on 9th July.
Hi, I had to complain to PALS about my first doc. Her attitude now is very good!
Re the steroid - I think its not listed as s/e if in the eye as its not meant to get into the rest of your body to affect it unlike oral meds do. It definitely does though as I got steroid induced cataracts in both eyes even though implant in only one.
Another, more positive, way to look at the long time its lasting is that there's nothing for it to work on, nothing using it up quickly. After my cataract op mine went in record time due to the op inflammation.
Keep your chin up, focus on the good stuff, and don't waste your days on things you can't change x
Hi! So glad your call for help to PALS worked, eyesright. I am waiting for a reply from PALS. The reason; I had to complain about an upsetting nurse who was trying to stop me having a tiny vial of anaesthetic drops to take home for post injection pain, (severe). She thought she could nay say what he drs. had agreed/prescribed for me. I shall share what happens.
Yeah it must get to other parts of the body! It seems very unlikely that it wouldn't in my opinion but obviously I'm not a medical professional 😂 just a simple beautician! But with your eyes being connected to your nose and mouth it seems odd to think the steroid magically doesn't pass to anywhere else.
I never thought of it that way! That's a really good way to think about it. It's a nice thought that my body obviously doesn't need as much use of it. Thank you! A new perspective on things goes a long way.
So sorry to hear of your experiences. Felt so bad for you reading your post.
I'm not surprised you have been experiencing panic attacks. Dealing with cancer and eye disease is a terrible strain. I can't believe you didn't get any sympathy. I haven't had a steroid implant but have been suffering from awful anxiety and panic attacks since my CNV diagnosis which coincided with other health and personal problems. I am on a beta blocker which helps. Will be trying the oil which thom3patty recommends.
I think you sound a very strong person and are coping well with all life is throwing at you. Hope the rant helped.
I do feel under alot of strain and stress at the moment with everything that has been going on. I suppose there is a limit to everyone and maybe I just reached mine! Been feeling exhausted especially the last 5 weeks. Sorry to hear you struggle with anxiety and panic attacks too amount other things - I never realised how crippling it could be til I experienced it for myself. I have heard certain tablets help but am reluctant to try medication until the implant dissolves fully - holding out hope that this is what is causing it. The oil certainly sounds like it would be worth trying!
Thank you very much! I usually pride myself on being a strong person but I have felt very much the opposite lately. The rant helped a great deal and all of these lovely comments have helped even more! More than you all realise!
Hi Eyerecovery1. I am sorry to hear of your bad experiences. I think I would seriously consider writing a letter of complaint to the hospital where you see your eye doctor - he sounds like a real bully to me. No-one should have the right to talk to you in that way. As regards your anxiety, meditation might be good for you as it could help with your anxieties and maybe help with your eye pressure. I wish you well for the future and hope that things turn in a good direction for you - you deserve it. xx
I was thinking about doing this but have no idea how to proceed! I've never made a complaint before!
That's exactly what I felt like, bullied! I honestly wish I had recorded everything he said to me because some of it was truly horrible. I left the appointment thinking how did that go from me crying at a doctor saying I've been having a really hard time and I'm struggling (to which I got well atleast your pressure is great! Bye!) - to him lecturing me about how I'm a drain on the NHS because I go for liver ultrasounds that ive been instructed to go for. I was mortified for crying at the appointment anyway (I'm not really a crier! Apart from these last 5 weeks when the anxiety flared up!)
Do you have any recommendations for the meditation? Any YouTube videos etc? I'm so new to this I have no idea! I'm into herbal things and have been relying heavily on herbal tea and lavender which do help to ease it a certain amount. Take the edge off, if you get me 😂
Thank you for the kind words! You have all restored my faith in humanity! Have to admit I left the doctors giving myself a pep talk saying "Nice people get nowhere! You need to stop being nice because you don't get it back!" But how wrong I was!! Nice people keep the world turning in the dark times. Looking forward to the future - hoping things can only get better!
Hi Eyerecovery1. All I can suggest with regard to the meditation is the internet. There are some good sites out there and probably at least one which will give you instructions on how to proceed. With regard to the complaint, I would email the relevant department stating that you wish to complain about one of their opthalmologists/doctors? and explain why. Maybe the Macular Society might be able to give you some pointers although I can't be sure of this. I agree with Whitegoose - good advice. All the best and let us know how you get on. xx
Isn't it frustrating! In situations like that I wish there was a super power that allowed you to touch someone and convey all of the pain and emotion you had felt - just so they could have a small idea of what you had been through! My mum and dad always say you shouldn't judge someone unless you've had to walk a mile in there shoes! I think sometimes these doctors become immune to sympathy because they see lots of bad things on a regular basis and think that's how the world works. But they have no idea of the individual journeys people go through and how hard it is to get through sometimes. (Obviously not all doctors some are absolute angels!)
Thank you for the kind understanding words! Hoping, praying and wishing every day for better days! X
Oh my word I am so sorry to read you post. Firstly you are extremely brave to have gone through what you have. Secondly it very much like you are a steroid responder and won’t be having another implant again. Not sure what the next steps would be but def here for any support and prayer if wanted.
Thank you very much for replying and for the very kind understanding words! I really appreciate it.
Thank you! Although I don't feel very brave at the moment I'm sure I will once I get on the better side of this implant haha. Are there alot of people who respond to steroids in a similar way? I've read bits and bobs on the internet. I definitely won't ever have this done again! I don't think I could stand it! I was hoping the implant would be gone by now - it was supposed to be 3 months but on 9th of July it will be 5 months!! They have felt like the longest months of my life. Very much hoping it will be gone soon.
Hi, is there a Macular Society group in your area, if so I would join, telling your story, listening to others is a great therapy boost. Also they would have helped and advised you what to do in your case regarding this particular bombastic doctor. You would make new friends, and you sound like such a nice person, any group would welcome you. If you google it, you will be be able to find a group in your area.
Thank you for taking the time to reply! Overwhelmed with all this lovely comments and advice.
What a brilliant idea! I never really thought/knew about there being a group in my area I could go to in person. Will do some research into this and fingers crossed there is something available near me! Thank you for the suggestion and kind words x
I feel so sorry for you having to deal with your cancer and eye problems. I had 2 implants and the eye pressure became very high. They were stopped as the ones I had were not being produced any more. During this time I was having eye drops 3 times daily. I have never felt as low and miserable for over 3 months. I put it up to old age. Then my eye became red and swollen. Went to the clinic as an emergency. The consultant took one look and said to stop all medication immediately as I was obviously allergic to something. As i was only on drops I stopped them. In a few days I felt much happier and am now back to normal. I find it difficult to think that the eyedrops could made such a difference.
I have now been on Eyelea injections for the last 9 months and haven’t needed drops since.
Could you be allergic to something you take? Just a thought. I was told it was probably the preservatives that I was allergic to.
As for the doctor he obviously has no bedside manner does he?
So glad to hear you have found something that works well for you with the Eyelea injections!
I have had something similar happen to me when I was on numerous drops and tablets at the peak of this implant! I'd been going for weekly pressure check ups and the doctor I'd seen that day (just so happened to be the same doctor I encountered again yesterday - I don't usually have him these have been the only two times thankfully!!) decided to change my eye drops to ones with preservatives in. I didn't realise this til my eye swelled up big and red! I stopped using them and swapped back to my original drops and the following week another doctor explained he'd gave me drops with preservatives and because of all the treatment I've had in that eye I'm particularly sensitive -which I'd known for a while! It just didn't click with me that's what was causing it! I've been lucky in that most doctors know not to give me anything with preservatives in.
No he most definitely doesn't! Feel very sorry for people who encounter him and judge the hospital based on him as other doctors I've had have been lovely!
A rant helps enormously!!!!! I do so sympathise, Eyerecovery1. This must be terrible for you so early on in your life. Some doctors are extremely unkind and horrible. One can only assume they are worn down by the huge work load they are lumbered with in the NHS, BUT that's no excuse!!!! As mentioned in these answers here I'd strongly recommend you visit your GP. Don't be ashamed to seek help with medication; for instance antidepressants aren't a cure all, but they really can help so much in times of stress and anxiety. Tell us how you get on! All the very best and big hugsxx
This rant has definitely helped! It had been so lovely and soothing to hear from all of you. I was feeling very low and you have all lifted my spirits and gave me some strength back!
Yeah I completely sympathize with the work load these poor doctors and nurses have to deal with! They do a brilliant job this is why Ive never made a complaint - I'm a big softy at heart and believe everyone makes mistakes! Even though it's only been two occasions this particular doctor has been a piece of work for both of them! Maybe the better course of action would just be to ask not to be put with him again.
I've been very tempted to go to my GP for some medication and abit of relief but I've heard the pills can be hard to kick! And I truly believe the steroids in the implant are what's causing my anxiety. I'm hoping if I can hold out til it's dissovled my anxiety will go too. Although if I'm wrong and I've developed the anxiety through stress etc I will seriously consider visiting my GP as I know people who this has helped tremendously.
Thank you for the kind words and for replying. I'm hoping yous will all have a much more positive post to read once I get on the better side of this! X
Our daughter was diagnosed with Ocular Melanoma a couple of years ago so we know that it's not the end when you get treated, she had Proton treatment at Clatterbridge, presumably you did too.
So far her whole body scans have been clear.
She too has suffered anxiety (as we all have) and was put on medication, but who wouldn't. You are brave to endure what you have and the medics must know what you and we know that you are at risk for the rest of your life.
Words can't describe what you must feel but just to say you are not alone. rant and rave if it helps you. There is an organisation for those diagnosed with ocular melanoma, I expect you know this already but just in case, I don't have the address but if you don't know about it, it should be easy to find.
So lovely to be able to talk to someone who has been through a very similar thing! How brilliant is the internet. Yeah I was also treated at Clatterbridge for proton beam! What an amazing team they have there!! They were excellent with me and my partner during our stay.
So does your daughter go for scans on her body too? 6 monthly? So glad that things have been clear for her! Yes, I found it very odd that this doctor told me it was pointless to go for these body scans and I am wasting NHS resources after the cancer specialists had recommended them to me! Surely they know what they are talking about!
Thank you! It has helped a great deal to have a rant and hear from all of you lovely people. You have all uplifted my spirits a great deal. I've heard it mentioned before but was unable to find a forum similar to this? Or is there not anything like that?
Thank you for taking the time to reply! Nice to hear from people in a similar boat x
Our daughter is 55 so you're in a worse position than her being younger. We know the chances diminish as time from the diagnosis and treatment passes. Of course you must have your six monthly scans, this doctor is wrong and needs to be told so. Like our daughter you have this threat hanging over you and the tension builds up before every scan, then hopefully for you and her relief for another six months.
I think The Ocular Society is the name of the organisation, as you people have a rare form of cancer it's quite small but may be able to help specially if you.re having the trouble you've been having.
I can't really put myself in you or our daughters position as I'm not living with the threat you two are, but I will say make every second count in the future, have a rage and a good cry if it helps but make the most of your life from now on.
I think it comes as a shock at any age! Although it's been a trying experience and scary at times I wouldn't change it for the world. It's made me into a much more understanding, caring and brave person - I wouldn't be the person I am today without it. I try my best to make a positive from a negative.
Thank you for agreeing about the doctor! I knew in my head that he was wrong in what he was saying but it's nice to hear that other people agree as you tend to second guess yourself, don't you!
Thank you I'll have another look into that group and hope I can find it. It's always nice to hear other people's stories and talk to people in similar situations.
Thank you again! Experiencing the things I have has definitely gave me a better outlook in life. Every day is important and always be kind because you have no idea what someone might be going through - now I always make sure I never let a bad day rub off on someone else.
Sorry you have had to go through such a traumatic experience. Certainly not a rant and hope it's helped you to get it all 'off your chest'. I've not had an implant but it sounds very complicated. For the past two years I've been having regular eye injections of Lucentis for AMD. It started off well with 3 four-weekly injections but as the months went by my treatment got out of control, with mixed messages from each 'injection assessor' I saw, resulting in some further damage to my eye. I was so anxious about my treatment, and the fact that I had not seen an ophthalmologist for over a year, that I phoned the eye clinic and spoke to the senior nurse who was very helpful - she listened to all I had to say and advised me to write down what I had told her about my treatment (so I didn't forget anything) and then take the notes with me to my appointment with the consultant ophthalmologist which she arranged for me. I met with the consultant who read my notes and apologised for all the stress & anxiety caused to me by the mixed messages I had received from different members of his staff. He said he was so concerned that he would call a meeting of his team to discuss the notes to ensure that the staff were all 'singing to the same hymn sheet'. He re-assessed my treatment plan to make sure I was 'back on track'. Since then my treatment has been better and I will certainly in future not hesitate to speak up if I'm not happy with my care. In defence of him & his staff, and other teams throughout the UK, they are working under a lot of pressure to cope with the increasing number of patients and no increase in staff to deal with it, and cuts in NHS funding.
Sorry to hear about the troubles you've been through with your eye! Sounds like that nurse was brilliant though. It makes such a huge difference when we encounter someone who goes that extra mile to help us.
I think sometimes that can be a problem for me - I tend not to speak up when I'm unhappy with the way someone had spoke/treat me because I'm so so grateful for everything the NHS has done for me. I've received absolutely brilliant care throughout my journey and I never want to appear ungrateful. I tend to put it down to "oh they must be having a bad day" but I've encountered this particular doctor twice now and both have been bad experiences. Luckily he isn't my usual doctor but I may ring up and make note that I don't want to be put with him anymore.
Thank you for replying I appreciate the kind understanding words x
Glad I could help in some way. It took me a long time to speak up about my concerns but pleased I did - as the consultant told me if patients don't speak up we don't always know when things go wrong for them. I was even at odds with my son over this as he said 'they are the experts and know what they are doing' but he now sees I was right. Like you I don't want to criticise NHS staff because the care I've received has generally been excellent e.g. the helpful caring staff nurse who advised me to write down my concerns - after listening to me she said my concerns needed addressing - I must have got lucky that day when she answered my call. Good luck for the future. Take care.
Don't apologize for having a rant I think you are entitled. I too rant from time to time and I think it does help to get it out of your system. I think the medics don't realize what it is like being on the receiving end, sometimes I think it would be a good idea for them to experience being the patient as they see so many people they become blase. Try to keep positive difficult i'm sure as you have a lot of issues. I have my next injection tomorrow which is nearly three weeks late and this is after being told that the fluid is back and I needed another injection as asap. It is very frustrating but I fear the NHS is overwhelmed.
Take care and try to treat yourself you deserve it.
Yeah sometimes a good rant definitely helps to get everything off your chest and it's been lovely and uplifting to read all these nice understanding comments from everyone.
Yeah I think because they experience so many bad situations daily they can become immune to it. I would never wish bad things on anyone but it would do some doctors good to walk a mile in others shoes! Although some doctors are brilliant and really understanding.
I'm feeling much more positive today and that's partly to do with all you lovely people! Sorry to hear about your injection problems. I hope all goes well and that your next injection (if needed) it's organised in better time.
Thank you for taking the time to reply I appreciate it x
I am losing my central vision in left eye due to AMD - have never gone through what is happening to you - but if you need to vent - this is the place to do it!!! I suffer from severe back pain and because I'm old (76) - 2 doctors have pretty well ignored me. I finally put my foot down last week and insisted he do some tests before I end up in a wheelchair! So he sent me for X-rays and the next morning I was called to come in and see him - so guess they must have showed something and that it's not just "old age"!!! Don't let that doctor's opinion get you down!! I've met quite a few with that attitude over the years!!! Keep insisting on getting help for you panic attacks!! I agree that CBD oil could help so give it a try if you can get it! Sorry I couldn't be more help but just wanted to let you know you have my sympathy!! You are so young to be going through this!!
Thank you for the reply! So glad that you've managed to get somewhere with your back pain! It's just such a shame you've had to push and fight for it. When we're feeling down and poorly it's the last thing we feel like doing! I know I've certainly lost alot of the fight inside me over the last few months and feel like I'm not being listened too. But it's uplifting to hear about you getting somewhere in the end! Hope they can do something for your back pain and I'm looking into CBD oil to help with the anxiety and panic attacks. Just looking forward to this implant finally dissolving x
Rant away...you deserve it ...and maybe get it all down on paper too. I’m beginning to think we should all go around with bodycams/recorders to have proof of all medical conversations! Yes our very own CCTV! (Could apply to so many non medical situations too....)
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Possibility of discontinuing Lucentis injections
Update 4th Ozurdex implant
