Debilitating eye injections: I had an... - Macular Society

Macular Society

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Debilitating eye injections

35 Replies

I had an injection yesterday which was not too bad after the previous one when my cornea was scratched and left me in excruciating pain.

I made a formal complaint and basically after a three month wait the response was that I had caused it after the anaesthetic had worn off. The nurse took to attempts to place the clamp.

I had to have this latest injection due to my sight being worse. I was determined to be brave and rise above the terror and pain afterwards. I feel dreadful today and cannot stop thinking about it. I know this will pass but this is truly a distressing situation for many.

I wish I knew the answer.

35 Replies
tallyho profile image
tallyho

I really do hope things improve for you. I have had monthly injections for 10 years now and hardly ever have had an issue. Wishing you all the best.

kateanne profile image
kateanne

I know exactly what you are going through as the same thing happened to me twice. The 1st time, during the evening of the injection when I couldn't ring the eye clinic, I went to A&E as I had no idea what was going on. It was there I was told I had a corneal abrasion due possibly the damage from the clamp. The same thing happened on the following injection. I don't need to describe to you the agony I was in! I have read on this site of folk being in discomfort anyway after injections and that it can be caused by an allergic reaction to the iodine. If that is the case, I think you can ask for it to be washed away after the procedure. I think in future I'll request this as there is always painful stinging afterwards for the rest of the day. HycoSan eye drops are brilliant as they aid healing and are very soothing. When I first got them they were called Hylotear but the name has changed. I do hope you feel better soon.

in reply to kateanne

Thank you so much. It is so good to have support here. I was just amazed that the clinic did not admit their mistake to the enquiry from my formal complaint and blamed me !!!!

I do get better treatment now but the whole procedure before , during and after is the most horrible experience. My eyesight is much better and I suppose that is a plus and I know,somehow you have to get round it mentaly.

I think I'd rather have a baby !!

kateanne profile image
kateanne in reply to

I agree with your last sentence and at least you've got something good at the end of it 😂 though If better eyesight is a reward then that is good as well.

arwmd profile image
arwmd in reply to

The way to keep them honest is to have someone accompany you .

Normywilson profile image
Normywilson in reply to

I am so sorry to hear about your experience. I had four abrasions and after getting advice from my eye consultant I have a process that seems to work for me.1. No iodine at all. The injector can clean your eye with another solution.

2. After the injection a eye washout with a saline solution

3. End the procedure with Xailin eye drops which the clinic provides or you can get on prescription . This keeps your eye lubricated and can prevent you giving yourself an abrasion when you blink!

4. I keep my eyes closed for at least an hour after the injections and put in Xailin every hour for a few hours to stop any discomfort.

5. I use Xailin throughout the weeks before the injections, this keeps my eye lubricated and miraculously has helped get rid of the itchy eyes I struggled with for years.

Last injection was the first time the injector didn’t use the eye clamp.

This routine has prevented an abrasion for the past two years but after new year I ended up in A&E but this time it was sensitivity to the anaesthetic drops.

My consultant explained that people get abrasions even without eye injections, when they sleep they don’t completely close their eyelids s their eyes dry out and on blinking they scratch the eye with their eye lashes.

I got so anxious and ‘injection phobic’ I had counselling from the Macular Society counselling service- very helpful.

I know without injections I’ll lose my sight so I am grateful to have them.

Good luck.

in reply to Normywilson

Thank you for your advice. I shall ask for iodine alternatives and get drops.

Penelopeflower profile image
Penelopeflower in reply to kateanne

Hi kateanne, could you please tell me what particular HycoSan drops you recommend, there are quite a few in the chemist, would be useful to have the description. Thank you very much.

kateanne profile image
kateanne in reply to Penelopeflower

Hi PenelopeflowerI use HycoSan Plus in the green box. It says on the box that it supports the healing of th surface of the eye due to dry eye or surgical procedures. Hope this helps.

Penelopeflower profile image
Penelopeflower in reply to kateanne

Thank you so much kateanne, that certainly does help. Best wishes.

in reply to kateanne

Why are we not prescribed this as a matter of course ????

kateanne profile image
kateanne in reply to

I think you would need to ask for it that's assuming you can still get it on prescription. Its quite expensive so it wouldn't surprise me if not anymore.

in reply to kateanne

You can buy it on Amazon. Is it good ?

kateanne profile image
kateanne in reply to

I find it very good. I bought mine on uegent delivery from Amazon when I had a corneal abrasion a few years ago and it soothed my eye then. I use it now when my eyes get sore or dry. Ususlly buy it from Boots nowadays. I only knew about it when I suffered from watery eyes in 2013 and was prescribed it by the hospital. It was called HyloTear back then. It may not work for everyone but you can only give it a go. As it lasts for 6 months after opening, its very handy to have as a standby.

in reply to kateanne

Thank you so much for the tip I shall get some.

kateanne profile image
kateanne in reply to

Hi Babyeyes. Out of interest, I have just googled HyloTear and it seems you can still get that from various places including Amazon. Its made by the same company as HycoSan with the same ingredients. As I couldn't find that in Boots, I've been buying the HycoSan instead. Best wishes.

in reply to kateanne

Yes both available on Amazon ! Again thank you.

JJnan profile image
JJnan in reply to

I have them prescribed initially from eye clinic and now now monthly from GP ..they are good x

JJnan profile image
JJnan in reply to

I'd like to add, I also use Boots eye mist for dry and irritated eyesYou spray with eyes closed...its so goid x

fed12 profile image
fed12

Babyeyes, I am so sorry this has happened to you. Going off on a tangent...I had to smile ironically at the results of your complaint; the 3 month wait for reply, the "not our fault". (My complaint incidentally was for a 5&1/2 hour wait in clinic for an injection under X-ray for an arthritic thumb). The usual ...we have to get you all in at once to get your consent before the surgeon goes into theatre …you were lucky we didn't send you home without the procedure being done because we ran out of time. (I was lucky my procedure only took 5 mns. so this didn't happen). I just couldn't comprehend why consent couldn't have been obtained at an earlier date, and proper appointment times put in place. Simples!!!

However the good news is every complaint, however dismissive the NHS is seeming to shrug it off, does have an impact, and attempts are made to try and get things right. So I am glad to read you got better treatment next time.

Keep posting on this forum.....It is v comforting, and informative.. All the best! Big hug. Tell us how you get on xx

in reply to fed12

Thanks fed12. We are all meant to revere the NHS frankly I don't. Its shambolic.Talking to a lady who worked at the hospital outside after she said morale was very low. Apparently all nhs staff have been given 'Thank you NHS staff'. She said most have ended up in the suggestion boxes !!!

It is such an emotive situation when your sight is impaired and a botched injection (of which there many) is unacceptable. All the very best to you xxx

Jihm profile image
Jihm

Sorry to read of this, Babyeyes. I am in the US, and I have found that for myself any post injection pain is always caused by the clamp, or post or whatever they call the thing placed in the eye to hold it open, rather than caused by the shot itself. The other possible source of pain is the timingof the injection. If the antiseptic is left in the eye too long before the injection my eye will burn regardless as to how thoroughly it is rinsed afterwards. I have learned to avoid the one doctor at the office where I get my shots who seems to make a practice of this delay in giving the injection. My usual doctor is very quick & efficient - if a little rough with the clamp at times. Best of luck to you in the future!

in reply to Jihm

Thanks Jihm . Yes it was the clamp that scratched my cornea. The wretched injector took two attempts to position it. I refuse to have it now. It pays to stamp your feet !!! Very best wishes.

Lizleiper profile image
Lizleiper

Helo Babyeyes ,so sorry to hear about your pain after injections . I know exactly what you are talking about ! There are no words that I know of to describe that pain !

I ended up in accident and emergency 3 times after having an injection from the same nurse .! It is definitely caused by so meone not knowing how to put the clamp onto the eye . Each time after my injection I had to have my eye bandaged tightly for a few days ! You do not need to have the same person giving your injections . I now have the same Doctor doing mine each time I go. I know it is the clamp because when the Dr. Puts the clamp on my eye it feels completely different , and I have no pain afterwards !

I have had about 40 injections and am pleased to say my eyesight is good and I can still drive .

Hope this has been helpful for you . You may show whoever it concerns my comments to you . Thinking about you .

in reply to Lizleiper

Poor you its all so unnecessary and it just makes the procedure so nerve wracking. However the pain is short lived and I have written a note to myself to read before the next one !!

You lose confidence and trust when an injection goes wrong and really it should not be like that. One nurse is so good you don't feel anything and little pain afterwards. All injections should be thus.

Bless you.

3furryfiends profile image
3furryfiends

you have my sympathy!! i had a similar experience in nov 2019-when the clamp scratched my eye.-several scratches!! i had a 7 and a half hour wait in the eye emergency hospital. i also lost the sight in my eye for several seconds!! it went completely white!! at my next appointment they refused to give the injection-but never told me what caused the loss of sight!! i was also told off for attending the emergency clinic!! just to say i now have the complaints dept on speed dial!! i am very disappointed with some of the practioners-i once had an injection were the nurse put the injection through my eye from left to right and it squirted down my cheek!! i have had my face washed in iodine as if i was having major surgery and the list goes on !! I hope you are feeling better now-i have the attitude now that i don't suffer in silence!! it might help others who are following me!! i don't know your age but do you find the clinics are set up for older patients and the treat everyone regardless of age as stupid and senile?-i have a personal hate of the names they call you-love, darling,dear and sweetie!!!

in reply to 3furryfiends

You have it precisely and I feel so sorry for some elderly patients who look terrified but would never complain.

It really is very bad, scary and incompetent. Like you I shall kick off if necessary and question.

My formal complaint was a waste of time so if anything happens again I shall try the GMC.

I'm also going to approach a newspaper and hopefully get them to highlight what so many people go through and some clinics complete lack of care.

I am 68 and agree with the false endearment s. They also shout at you !

Topsy21 profile image
Topsy21 in reply to

I feel so blessed that I can see.I never thought I would,as both my mum and her mum were registered blind. Life was hard for them,no treatment,they couldn’t enjoy the things we take for granted like shopping,tv,nature,meeting people etc. I thought my life would change forever and I was very down. That was 4 yrs ago and now I live normally,still drive my car,look after grandchildren , enjoy tv and walks along the beach.

It is a bit difficult to read books now but I can read smaller articles,like in newspapers and magazines.

I am so grateful to the NHS,I know how high the cost of the injections are. The iodine used to sting my eyes for hours afterwards,but now they use a different solution so it is not an issue anymore.

I am told Macular disease is increasing,especially in younger adults.l Hope research and current studies will continue to improve the outcome of the devastating effect caused. I do wish you well and that you feel better about your care soon.Sending you love.

in reply to Topsy21

I am glad for you but the fact remains that many people suffer due to bad procedures.

folkmusicilike profile image
folkmusicilike in reply to

Hi Babyeyes I made a long response to your question on my 4 year old thread! Yes, some people do suffer and it is not taken seriously enough.

On the question of complaints - I’ve never made a complaint, as such. I had a to go to A&E because of severe pain following an injection and had loose epithelium removed from my eye. The doctor said it was probably due to the clamp, but at the injection clinic they didn’t like that explanation. I was referred to the cornea specialist, however, who diagnosed corneal dystrophy - something I was born with, apparently. He said most people never have problems with the corneal dystrophy but that the repeated treatments and occasional poor application of the clamp had caused my corneal erosion. I had treatment just over a year ago (corneal debridement ie removal to cause regrowth). I had another episode a few weeks ago. I have been prescribed various strong lubricants to use hourly and gel at night - Hylo Night. I am sticking to a strict regime of lubricating my eye now. I still have slight problems in the morning but put in more gel immediately and, so far ( about 4 weeks) I have been ok. The gel does blur my vision for a short while.

I would ask about how to maintain lubrication in your eye and ask for prescribed medication. I think you have to be really persistent with the clinic and insist that they take your pain seriously. It’s not easy - they do have a very busy clinic and they won’t act until you make a strong case (it took ages for them to believe I had a problem with iodine. Eventually, the consultant had a change of heart - I thought she must have been on a course!)

I’m amazed by people saying they are buying eye lubrication from Amazon and that it is not prescribed by their clinic. I’m thinking about moving and, although I find the injections and other problems I’ve had at my clinic tough, I’m concerned that I will have to start the battles all over again in a new clinic.

in reply to folkmusicilike

Maybe moving might be better for you. I really believe that eye injections should be looked into. It seems the whole system is in a rut and needs overhauling. It is outrageous that consultants earn so much money and they can't pull up their clinics to higher standards.

I made a formal complaint when my eye was scratched by the clamp. The clinic said I did it !!!!

Poppieagain profile image
Poppieagain in reply to 3furryfiends

I share your experience and yesterday had a particularly bad time with a third eye injection. So much so that I had to return to the clinic as my sight was so blurred and at times I could only see a white patch. They eliminated pressure in the eye and decided it was a reaction to the iodine and gave me eye lotion. It was very frightening as my previous injections had not caused such a reaction. Thankfully although my eye is still sore I can now see again! (At least as much as I could before).I too noticed that some of them spoke in loud voices to me as if I had no understanding of what was happening and could not hear. I think that there needs to be more awareness of the different needs of people I almost suggested that I would organise a course for them!

in reply to Poppieagain

Well done you. I think the more we complain the more notice they will take. I think they need to seriously review the procedure. So glad you are better now .

Janbeach profile image
Janbeach

When I moved out of state, I had to find new retina specialist. The first Dr I saw was not very good, he shoved the eye cup roughly on my eye. He announced in the examination room that he needed to text his wife. I was not pleased with his treatment of me. I called and asked if there was a different Dr available, in the same group. I have been extremely pleased with the new one.

in reply to Janbeach

I am pleased you got better treatment. Some of these doctors should experience this procedure and then maybe they would take more care. All the best to you.

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