I am very frightened of eye injections and needles into eyes! I cannot get myself to do this! I need the Eylea medication, but just cannot handle this! Is there someone out there experiencing this who can help me? The doctors are indifferent and do not care. I need a friend 
Please Helo!
Eye Injections -Please Helo!: I am very... - Macular Society
Eye Injections -Please Helo!
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Bunny1756
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Becky_MacularSocietyPartner
Good Morning Bunny1756,
Here at the Macular Society we have "Injection buddies" where anyone who is worried about starting their injections can receive a call from one of our volunteers who have had injections themselves and talk to you about their experiences and what their worries were and help you out!
If you'd like to be set up with an injection buddy, please give us a ring on 0300 3030 111 and we can sort this out for you
Best Wishes,
Becky
The Macular Society
Advice and Information
0300 3030 111
help@macularsociety.org
Hello Becky,
Thank you! I am in New Jersey, USA. I have no one to help me here I cannot handle this!
I live near Trenton NJ. Had both eyes injections for 4 years. If you need to talk or my doctor name email me. Robnos @ Verizon.net
Hi Ugean,
We are neighbors...you are near New Jersey? Yes, who are you using for a retina specialist? Are you still having the injections and what medication? Has it helped you? What has your experience been like before and after? Any pain? Are the injections helping you?
Thank you so much,
Bunny1756
I live in NJ. I’ve had 4 eylea inJections so far
Zoey2020,
We are neighbors 
Please share your experience before and after the injection. Are the injections helping you?
Thank you so much,
Bunny1756 (:3
They are working on a way to deliver the anti-vegf medicines without needles. Nothing has really worked so far...hopefully soon.
In the meantime, these shots can help us save our vision. My very good friend was diagnosed with wet AMD at 40 years old! Unfortunately , it was before these injections. She is now legally blind and cannot drive anymore (or read a menu without a magnifying glass).
I was as frightened as you (probably more...because I read too many “clinical trail” reports...and drive myself crazy). But my experience with my first Eylea injection was extremely positive. No pain, but a dramatic improvement in my eyesight!
Zoey2020,
Yes Zoey, you are correct; “they” certainly are....and closer than everyone would believe. Who are you using for a retina specialist in NJ to give you the injections?
Thank you so much,
Bunny1756
They are working on a way to deliver the anti-vegf medicines without needles. Nothing has really worked so far...hopefully soon.
In the meantime, these shots can help us save our vision. My very good friend was diagnosed with wet AMD at 40 years old! Unfortunately , it was before these injections. She is now legally blind and cannot drive anymore (or read a menu without a magnifying glass).
I was as frightened as you (probably more...because I read too many “clinical trail” reports...and drive myself crazy). But my experience with my first Eylea injection was extremely positive. No pain, but a dramatic improvement in my eyesight!
Hi Bunny, just tell yourself firmly that every eye department all over the western world gives injections all day every day and everyone comes back for more. The rest of the 3rd world would love to be able to have these injections.It should help. Also take a friend with you and make sure you tell the staff how frightened you are.
Good luck!
Hi Daisyroo,
Thank you for your kind advice. I have absolutely no friends or family to come with me or help me through this any longer. My family is gone. I am completely alone. If I could create someone like that, I would do so in a heartbeat. I wish I had someone like that. I go for days to weeks without talking to or seeing anyone. It makes this that much more difficult and frightening.
Take care,
Bunny1756
I am so sorry to hear that. Can you try your local church? I don’t know your age but here in the uk we have age uk who offer support and also ‘sight loss’ support groups. For many years I have worked with people who are alone and facing these injections and honestly they are very safe, very effective and in the vast majority of cases they do not hurt. I have spoken to someone who has had 102 injections! He still had his sight and found the injections a doddle. These injections save your sight. Hopefully soon they are going to produce an injection which lasts for 12 weeks. Ask people for help. Show people you need support. If I wasn’t across the pond and wheelchair bound I would come with you! There must be someone like me near you. Ask at the eye department. Go for it and good luck.
Daisyroo,
Thank you again very much! Some have no problems with the injections while others have complications and are in a great deal of pain. There are no religious organizations to help me here. That is a complete “dead-end” for me. I never received any help from religious groups. I stopped trying that a long time ago. More needle procedures? Never! Needle injections into eyes MUST STOP! We need DROP delivery!
Take care,
Bunny1756
Becky,
Are there people to help in the United States? I am completely alone and have no one to help me, This is another reason I am very frightened, The side effects are also a nightmare. If something goes wrong, I am terrified.There is no one here to help me. I am trying to find other doctors and practices.
Good Morning Bunny1756,
Unfortunately as we are a UK charity, our services are also based over here,
However you can continue using this forum to share experiences etc with other members, there are members on here from all over the globe.
For some support in the US I have linked some websites of charities in the US, you could get into contact with them to see what support services they can offer for you
brightfocus.org/research/ma...
Best Wishes,
Becky
The Macular Society
Advice and Information
0300 3030 111
help@macularsociety.org
P.S.
Here is our booklet on treatment, it describes what may happen at your treatment appointment, it may be slightly different in the US but it should be similar
macularsociety.org/sites/de...
And a link to our other patient information in case you are interested
Becky,
Thank you so very much. If there are others in the USA I can communicate with, kindly advise or forward my e-mail or via this wonderful Grouo.
Bunny1756
Becky,
Thank you again. I am going to make an appointment with another retina specialist today, I need every bit of help with this!
Bunny1756
I have had 10 Eylea injections and was very concerned before the first one. However I have had only minimal discomfort after each one . It is only natural to be concerned but based my own experience there is nothing to worry about. You feel only the smallest sensation when the injection is made as the eye is anaesthetised and the antiseptic drops used afterwards for seven days helps to avoid any infection. I hope this helps.
Hello fishing 1949! Yes it helps tremendously I am new on this journey and I’m terrified of these injections -most people on this site write of how dreadful injections are how painful etc there seems to be very few people out there like you who feel minimal pain. If there are others please respond and let people like me know that it’s not all bad! 🤗😘Highouse
PS having written this I read further down and there ARE more positive experiences thank you😘😘
I just finished my third injection and honestly they do not hurt. The first two didn’t hurt at all, and the third one for some reason only the betadine solution to sterilize my eye before the shot burned (this did not happen on the first 2 shots). On a scale of 1-10 with ten being the worst, I was scared to do it on a level 10 and the discomfort when it happened probably a 2.
Thank you so much fishing 1949-it is so reassuring to hear good experiences - even though I know bad ones happen-especially when you’re new and have just been diagnosed😘. Highouse
Hi Becky,
Can you please tell me how you e-mail someone privately off the main thread! I tried several times and I do not think I am doing it correctly.
Many thanks,
Bunnt1756
Good Morning Bunny1756,
Our email address is help@macularsociety.org
or you can fill in our online contact form which comes to the same email address
Best Wishes,
Becky
The Macular Society,
Advice and Information Service
help@macularsociety.org
0300 3030 111
in reply to Bunny1756
Bunny, if its another poster you want to contact then ask them on the thread if you can private message them. If they are happy and say yes then make a note of their user name, click on the two speech bubbles on the header, click compose and search for them. Then you can type just like a private email. Only you and they will see what you write.
I have injections every 6 weeks and while I can’t say I enjoy it I know how much it is helping my sight. The actual injection is not too bad at all because you have so many numbing drops into your eyes that all you feel is a bit of pressure. The worst bit for me is the blurriness after and occasionally a bit of grittiness in the eye and I just use moisturising drops after.
I was very concerned for my first one but looking at patients coming out after their injection I felt a lot happier as no one looked upset.
All the best
Thank you Koalajane,
The techs do not seem to care either. Very uncompassionate, One said to me, “It’s doable.” I do not think it is so “doable”. I think this is a nightmare Needles into eyes? It is crazy! It is imperative to STOP needle injections into eyes! .
They are working on a way to deliver the anti-vegf medicines without needles. Nothing has really worked so far...hopefully soon.
In the meantime, these shots can help us save our vision. My very good friend was diagnosed with wet AMD at 40 years old! Unfortunately , it was before these injections. She is now legally blind and cannot drive anymore (or read a menu without a magnifying glass).
I was as frightened as you (probably more...because I read too many “clinical trail” reports...and drive myself crazy). But my experience with my first Eylea injection was extremely positive. No pain, but a dramatic improvement in my eyesight!
Thank you, Koalajane,
Another tech said to me, “It is “doable.” I do not think it is so “doable.” Needle injections into eyes? It is crazy! It is imperative to STOP needle injections into eyes! There is no one to help me here :(. The techs and the doctors are not helpful; they are indifferent, and do not care. It is not their problem and I do not mean anything to them.
Another very big difficulty for me is learning of the terrible dangers of needle injections into eyes. It is NOT safe! Needle injections into eyes is causing blindness, ruptures, infection, hemorrhage/bleeding, detached retina, and terrible pain. On top of this, the injections must be repeated depending upon progress of the patient. I cannot handle this once! One slip of the doctor’s hand and you are also in trouble. The pharmaceutical companies know this is a true. NIGHTMARE. They must create DROP delivery for these medications! Genius Scientist Needed....Emergency! It is imperative to STOP needle injections into eyes! Dangerous, barbaric and inhumane! Just because it is being done does not mean it is good, correct or safe! I would never do this to an animal! I am terribly frightened by this nightmare ;(
Koalajane,
You have had multiple injections of the Eylea medication. Is it definitely helping you?
Many thanks,
Bunny1756
I have had quite a few Lucentis injections in my right eye and it is definitely helping that eye. My left eye started after and is only slightly better. I have macular oedema
Koalajane,
Thank you so much. I am going to make an appointment with another retina specialist today and try to keep it
Well done. I hope you feel better with a new specialist
Hi Bunny1756. Please don't be afraid, it sounds awful I know but it's not anywhere near as bad as you think. I was like you when I was told I would have to have the injections, I was petrified in spite of the Opthalmologist telling me that all I would feel was a tiny bit of pressure but that's exactly all you feel and it's over so quickly you will be surprised just how quickly. Just tell the nurses when you attend that you are really afraid and they will reassure you. As Koalajane said, you will have numbing drops in your eye so you won't feel anything but a bit of pressure. Just remember, it will benefit your eyesight. Good luck, Let us know how you get on. xx
Thank you, Springcross! I am just so frightened, it is paralyzing me! Many people say they are in terrible pain afterwards. I saw a retina soecialust twice,. He said to me, “I have had patients go blind from this and it does not work for everybody.” I could not get out of there fast enough, I am completely alone and have absolutely no one to help me or be with me. I just cannot do this! I wish I could go to sleep, The techs are not helpful. They tell me, “It is my decision.” I do not know what “my decision” is! They MUST create a DROP delivery system for this! Eventually, it will be done with DROPS. It is just a matter of time, Genius Scientist Needed.....Emergency! The retina doctor also told me “ I am not putting the needles into my eyes! “ That was supposed to be a joke, I do not think it was funny; more like pathetic.It frightened me more. I am shivering just to even think about this! I think it is dangerous, barbaric and completely inhumane!
Hi Bunny1756. Are you in the UK?
I am in New Jersey, USA.
Hi Bunny1756. What exactly have you been diagnosed with.
Retinopathy. I did not know, I had absolutely no symptoms, My sugars are very controlled. I woke up in mid-August and realized my sight was not quite right, I figured I just needed to change my glasses. I went to an opthomologist who told me there was more of a problem. They were not helpful and did not care. I then went to a retina specialist. In my right eye, I cannot read small print. I know I need the medication but cannot deal with needle injections into eyes!
Hi Bunny1756. I don't know what else to say to you Bunny. You really do need the injections in order to make your sight better and to prevent it getting worse. Do you not have any friends or family members that can come with you for support?
Springcross,
You have had multiple injections of the Eylea medication. Is it definitely helping you?
Thank you,
Bunny1756
Hi Bunny1756. Yes, I have been having injections for about 18 months now (there are many here who have been having them a lot longer than me), I was like you when I was first told that I would have to have injections. I was terrified but when I told my Opthalmologist that I didn't think I could have it done, he said that it wasn't that bad and all you feel is a little pressure. He was so good that I believed him and went ahead with it. He was right, all I did feel was a little bit of pressure, it didn't hurt - it was more like a strange sensation and certainly not painful. I can't say that every time is perfect but what in life is? The great majority of the time it's fine. Regarding your question as to whether it is helping me, I left going to get my eyes checked too long thinking that all I needed was new glasses but all the time, my macula was leaking fluid and because of that, damage to my central vision had been caused that can never be put right. It was totally my fault. However, the Eylea is keeping it under control and stopping it from getting any worse (I have wet macular degeneration) and for that, I am very grateful and also I am grateful that we have the opportunity to have injections. Don't worry about going alone. Where I go I see so many people of all ages attending for injection completely alone.
I am wondering if your doctor may not have been being unkind to you but rather was trying to advise you what may happen if you didn't have the injection.
It's up to you Bunny but have another think about it and let us know what you decide to do. Take care. xx
Springcross,
I am going to make an appointment with another retina doctor today and try to keep it
Many thanks,
Bunny1756
Hi again Bunny. I forgot to say to you that I am really sorry to hear of all the sadness in your life. It has not been easy for you from what you say. Life can sometimes be so cruel. Eyesright's message has some good advice in it, maybe have a think about it all. xx
Springcross,
Many thanks, I am going to make an appointment with another retina specialist today and try to keep it ;(
Bunny1756
Springcross and Everyone,
You along with everyone else here are all truly amazing I am so happy I found you all. Today, I researched retina specialists. I read and reread all your comments.
I have another question: What is the experience like right after the injection when the numbing drops wear off? To me, this is an eye injury.
After everything , I went in again and reread the biographica, information on the doctor I have already seen twice. Somehow despite everything, I just believe I will be secure with him. His education and background is outstanding, he is an eye surgeon, and he holds many prestigious positions. All this reflects a fine doctor which is exactly why I selected him from the beginning.
Because of everything you have said to me, the more, the better I am going to try this again. The earliest appointment I could get was February 19th, 10:30am. This will also give me time to settle. I feel I really need to be told how to handle this and exactly what to do, both from you and the doctor. I will continue “talking” to all of you here and read all the information Becky sent to me.
Regardless, my feelings about this have not changed and never will. We should not have to be going through this. With everything I know, there will absolutely be DROP delivery treatment, patient administered, very, very soon.
God Bless You All,
Bunny1756 (:3
in reply to Bunny1756
Well done!
I'm glad you are trusting your original choice of dr.
There's a new set of threads on this site called Helpful Stuff. You can search for them using the magnifier on the header but you may have to page through as it's not just for the eye section of healthunlocked.
Alternatively search the original poster's name and they should come up ( I will go look for it now = TwasBrillig).
Anyway, One is about the injections and how to make them as easy as possible. That would be a good place for you to start to get specific info. X
Bunny1756 in reply to
Eyesight,
I will definitely read everything you have suggested and give you my feelings,
Many thanks again,
Bunny1756
Hi Bunny. Thanks for those kind sentiments but you know what, you are pretty amazing yourself too. It seems that the post I sent you yesterday in response to your post telling me that you were going to make an appointment to see another retinologist has disappeared so you obviously didn't receive it. Never mind. I am really glad you changed your mind and decided to go for it - I really think you are doing the right thing. 👍
You wanted to know what it's like after the injection. I had my injection today, it went very well and I came out of the hospital feeling pretty good. I didn't feel a thing (all except a little bit of pressure). I've had a couple of feelings of something in the eye near where the injection is inserted but each time it has passed off very quickly and is now OK. Like I said to you before Bunny, it's not perfect every time but today and my last one six weeks ago was. I have a little bit of leakage again behind the macula so instead of going in six weeks time, I have to go in four week intervals for the next couple of injections, then five weeks and try to build it back up again. No-one's fault but my own (as I mentioned in a previous post) for letting it go on too long in the beginning. I had no ill after-effects from the anaesthetic drops except a little bit of a feeling of dryness on the eye near the injection site which lasted about an hour.
I am glad you are seeing the retinologist you spoke of before. I am sure he has your best interests at heart and was only trying to make you see how important it is to have the injection. Take care. xx
Springcross,
Many thanks again! A wonderful man from the Macular grouo just telephoned me and I have a new friend He really helped me today. I filled him in on things also. He is in Pennsylvania; I am in New Jersey. I will call him tomorrow and keep in touch with him because I very much need his help. I am so happy I found all of you
Many thanks again,
Bunny1756
Hi Bunny. That's brilliant, I am so glad for you. 😊
in reply to Bunny1756
Fantastic news! so pleased for you x
Bunny1756 in reply to
To Evgeryone,
After these injections, does the eye have any long term pain/soreness?
Many thanks again,
Bunny1756
in reply to Bunny1756
I've had varying experiences. Mostly just a bit achy for a day or so. A couple of paracetamol is all I've needed and could probably not had them.
Sometimes no discomfort at all.
Other times eye has been sore for a day or two ( once 5 days) but once I realised it was the iodine causing it and ensured eye washed out thoroughly hasn't happened again. I use sterile soothing drops before inj, I ask clinic for good wash out and they put some in after rinsing eye after inj, I use them when I get home, and regularly rest of the day. The iodine is the best cleanser so better to have it and washout after ( if you have real problems with it they can use an alternative almost as good).
Keep out of wind and dust so no irritant to eye. Don't get water in eye for 5 days ( no swimming, careful in shower etc). Wear sunglasses in bright light.
Ive had no long term pain from inj.
Bunny1756 in reply to
Eyesright,
I need to hear all of this...I am trying very hard to convince myself to do this. The appointment is set along with my transportation. The problem is this treatment is continuous....
Take care,
Bunny1756
in reply to Bunny1756
We will not lie to you. But take on board what we say Bunny - by this I mean don't just ' hear' the scary bits, continue to 'Listen' to the positive too.
I am so impressed by your courage - look at your first few posts and then read the one where you say you've spoken on the phone to a new friend.
Such a difference in a few days! I hope you continue down the path of positivity - still aware and informed but balanced and more confident in your choices.
Typing is not as good as real speech so words, emphasis and tone can easily be lost.
I have had many more good inj than sore ones and only 1 was very bad ( and if I'd known about the washing it would have been fine after!).
How do you know you need continuous treatment? You don't have diabetes do you? ( and even T2 can be cured ).
There are many causes of non diabetic retinopathy . I've read that at least one may self correct within a few months.
How is your underlying cause being treated? In the UK the consultant ophthalmologist would have written to the gp. with their diagnosis so that a follow up appt. will happen to ensure systemic treatment.
Anyway, keep up the good work & enjoy cuddling your sweet little pet.
Bunny1756 in reply to
Eyesright,
Nothing I have written previously has now. It is everything all of you have told me that is making the very big difference. I am worried about being alone through all of this. If I have that first injection and I am in terrific pain or something goes terribly wrong after I leave the office. I am going to ask the doctor if I could stay there for a while afterwards and have him check me before I leave. I know I can telephone the doctor on call, even in the middle of the night, but usually they just tell you to go to the hospital if you feel things are critical or something is very wrong. I am worried about all of this. A needle is going into my eye....deliberately.
I am probably pre-diabetic at this point. Something caused this,.one day I was fine. The next,I just thought I needed to change my glasses. Heredity...I know my mother and her father were diabetic. I do not know about her mother. She passed when I was 8 months old. My sugars are very controlled with diet and nutritional supplements. The highest it has been when checked was 102 fasting. Lately they run 82-96....in that range.
I am eating very little and very carefully. No bread/grains of any kind, no sugar or sugar products; no starch, rice, potatoes; except a very occasional sweet potato, baked. No fruit, no chemicals, yeast extracts ((MSG), hydrogenated oils, high fructose corn syrups, artificial sweeteners of any kind except absolutely pure stevia.. Nothing with added sugar. No red meat....only chicken, turkey or fish; egg whites, no yolks; nuts, only raw or dry roasted without oils; pure butter grass-fed, olive oil, fresh /raw vegetables, no salad dressings, low fat/low sodium cottage cheese; wonderful, Greek yogurt (only 2gm natural sugar in 5 ounces; nothing added). Hard cheese, low cholesterol; clear seltzers, waters, herbal/decaf teas. That is pretty much everything. I do not drink any coffee, never have; no dairy milk.
I do not know how often I will need the medication at this point. I am listening to all of you.
God Bless,
Bunny1756. (:3
in reply to Bunny1756
That sounds like a normal ( good) range to me, down from the prediabetic level >100 you had so if you keep up your good work on sugars you can beat it!
My friend did this. She was classed as diabetic but has through diet changes now been declassified.
My grandfather died of a diabetic coma ( during ww2) but non of his descendants (3 generations) have diabetes.
Yes, good idea to speak to your doc and wait a little while - my clinic often ask us to sit for 20 minutes before leaving ( though I have a different inj to eyelea now).
I would ask him what he thinks is the cause of your retinopathy - that will help focus any future questions you might have, possibly signpost other action you can take to help yourself, and find others with the same to share specific info.
Best wishes going forwards.
Hi Bunny. This is my personal experience. Sometimes there is soreness afterwards. This is due to the iodine which is used beforehand to cleanse the outside of the eye and surrounding areas to ensure that no germs etc are present when the injection is given. The iodine is cleansed off afterwards and before the injection. Sometimes a little bit of the iodine gets into the eye which can, only in some people, cause soreness. Your eye should be flushed out after the injection with an eye wash which should prevent this from happening. If they don't flush your eye afterwards, tell them that you want it done. I always take my dark glasses with me to wear on the way home if it's sunny, glasses also give some protection against wind, dust etc.
Springcross,
Thank you so much for all of this. I will remember everything you are telling me. Does it snow in England?
Bunny1756 (:3
Hi Bunny. Yes it does snow but not a lot where I live in the South West. What about where you live (or is that a silly question 😃?
Springcross,
Here in New Jersey USA, we usually have two to four big snowstorms during a winter season, which is now. The weather pattern has changed tremendously. So far. only about three inches in overnight which melted by the next morning. Nothing more this winter yet. It has been raining a great deal. Today it is raining hard and very windy, in the low-mid-50’s. The weather pattern has definitely. changed.
Lately, I have been experiencing an unusual glare when I am outside or in light, I do not know why. Sometimes it passes, sometimes not.
I think we are 5 hours behind you, timewise.
Bunny1756
Mention this to your Retinologist when you see him - he may have an explanation for that.
Springcross,
I definitely will. The retinologists doctors do not examine eyes for glasses. In fact. both times, the techs in the retinologist office had me read charts with my glasses that are many years old. I told them this was ridiculous. Sometimes I actually see better without them. This to me indicates of course, my eyes have changed. I want to have my eyes examined for glasses. That is how all this began. I went first to an opthomologist. The tech there was having some sort of difficulty, She told me she thought something more was going on. Then I researched retina specialists on my own. No one did that for me. Now I am thinking there is no point in a new prescription until things stabilize.
The saga continues,
Bunny1756
I have absolutely no one. I am completely alone. It is a big world and yet I am completely alone. I have tried calling or contacting people and they speak to me for a few minutes generally, and quickly tell me “they have to go.” I often wonder where? They are not interested in me in any way. I go for days to weeks without talking or seeing anyone. Now with this eye problem, no one to help me or care, and not knowing what to do, I am awake sometimes all night long trying to help myself. I just found this group and you are not nearby. I took care of my parents and was there for everything for them. I was their caretaker for everything around the clock. They were there for me. I miss them every minute of every day and I cry sometimes all day long, I knew this was going to happen. It is terrible that we must go through so much of our lives without those we need and love I lost my father in 2010 at 90 1/2; I lost my mother in 2016 at 93. There is no one else. Very distant relatives, not nearby, who do not care about me in any way. They live for themselves and their own families. I am not a part of them or a priority in any way. They would not do anything for me. Friends? There are no friends. I have never had a “friend” do anything for me, A few were only around when they wanted something; once they got it, I never heard from them again. Many have their own problems; others moved away, They are not interested in me and never did anything for me. Just do not ask them for help. They go out of their way to avoid you because they are afraid you may ask them for something, I am not a priority to anyone.
Bunny, sending you a hug X
Take a breath and calm your mind.
The macular society have offered you contact with someone. If you cannot afford to phone the UK helpline try emailing them instead - I'm sure they will have someone willing to "talk" to you privately that way, or in some other format.
There is also a Facebook page you can make contact with people.
I don't know why other countries don't have a similar charity. Maybe you could be the one to set it up in your area??? Take control rather than feeling helpless and alone - ask to put up a notice in your Dr Clinic to form a local support group? I'm sure everyone else who gets inj there would be grateful!
There are lots of folk on here from USA who might reply and suggest a better Dr. That clinic sounds awful.
As to your panic - it's simple. Do it or don't. Yes. That simple.
Yes, it's not a nice thing to think about ( but your fear is of the unknown, they are not as bad as you imagine), yes there are potential risks and side effects. This is life, nothing is easy or risk free. You know this already. Doing nothing also has risks!
But only YOU can decide if one moment of injection every few weeks is worse than the likelihood of losing central vision in that eye for the rest of your life.
For me that was a simple choice.
Consider that Dr would not say you needed inj if you didn't.
Consider the tens of thousands of people who have had inj for years with no significant problems.
Read posts here and see how others cope. You can too.
I too was panicked at the beginning. My advice to you is to get professional counselling (again, try the mac soc if you cannot afford someone local) to help you overcome this as you are clearly not in a good frame of mind at the moment. You need to be helped to remain open to the positive possibilities - we can all tell you not to panic but only you can decide to listen.
I wish you a peaceful mind, a positive outlook, and a solution to your eye condition . x
Bunny1756 in reply to
Eyesright,
Thank you for your wonderful letter. In many ways, you are right. However, many of your suggestions, I have already tried. I have tried to speak and locate other patients to help me. Most will not help or speak with me about their experiences: they are too upset or have other reasons. In the retina office when I was there the second time, I saw a woman come in and then was at the check-out desk with a patch over her eye. I asked her if she was just treated with an injection? She said “yes” and began talking to me. At that very moment another woman, who identified herself as the office manager, pulled me aside and led me into her office. She told me there were “HIPA” privacy laws and I should not talk to other patients! Welcome to the USA! The doctors’ offices would never allow notices as you suggest. The local libraries sensor the bulletin boards and you cannot put up such notices.
You are all helping me here quite a bit right now. I have researched the daylights out of the Eylea needle injection treatment. I can share with all of you many facts about this procedure and the medication that I am POSITIVE you do not know. Education can sometimes be dangerous. I am going to see other doctors to try to find someone who perhaps will care, even a little. Please understand, if I try even one injection, and have a terrible reaction, I have absolutely no one to help me through this. Yes, doing nothing is a risk. I agree with you. However, when you are completely alone, “risk” is dangerous. It is not easy to “jump into the fire” without thinking things through, all alone. I have no “safety net.” Risks frighten me terribly. People travel on airplanes every day, taking risks, and are history. Everyone is in a hurry. Is the trip worth the risk? I do not think so. Perhaps you do. But this is only my opinion. I will not travel by airplane ever again; ever since the terrorists used the planes as guided missiles and slammed them into buildings. Security is just too sloppy, and aircraft maintenance is terrible; and I am someone who absolutely loves airplanes. I realize there are no guarantees. Yes, the doctor told me I need the medication. But he also said, point blank, “I have had patients go blind from this and it does not work for everyone.” This is the reality of this nightmare.
I did respond to Becky/Macular Group, asking her if there were members here in USA. She has not responded as yet. Regarding telephoning UK, my telephone service is only within the United States. Communication would have to be via. e-mail. I have never used Facebook and I have no idea how it works.
Eyesright, you have had many Eylea injections. Is it helping you?
Many thanks for everything to all,
Bunny1756
in reply to Bunny1756
Hi, yes I've had lucentis, eyelea and now ozurdex. Without them I would have no central vision in my left eye ( I know this because there have been times I lost it between treatments).
I too research well before undergoing treatment and I understand the feeling of being between a rock and a hard place. The panic I felt at not being able to see to read was enough to overcome my fear of treatment.
My condition is now chronic and one day the treatment may stop working but until then I will make the most of the restored vision it gives me. The side effects I've had have been worth it.
Until you try Bunny, you probably won't believe me - but honestly, it sounds so much worse than it is! Yes, there are risks, and its uncomfortable - but the potential rewards are very great. One of the techniques I find the most helpful during the actual injection process is simply counting my breaths, as you would in an MRI machine or any other endurance-requiring medical procedure. It focusses my mind and the anxiety it holds on a simply practice that IS under its control.
Big hug,
Sian
Yes as others have said it really isn't so bad. I was scared to start with but if it saves your sight that is what you have to think about. I have lost count of the number I have had and many people have had over 100. My problem is that they don't seem to be sorting my problem out. Please don't be scared we are all here to support us and wish you all the best.
Pink perfection,
Thank you for your kind advice. With all the injections, is it helping you?
Bunny1756
The eye clinic I go to are not sure I have Macular degeneration but I am still getting fluid behind my eye so in theory they are giving me injections to stop it getting worse. I like to think it hasn't got worse but not completely sure.
Alternatively you could also consider taking ~15mg Oxazepam an hour before, at least until you feel more confidence in the procedure. I don't like taking pills myself, but I consider it much better than "overdosing" on adrenaline. Either way I have a feeling that when you build experience and confidence you'll do fine, and you'll end up feeling like you wasted time worrying about it. Wish you the best.
BJ00RN,
Thank you. I do not like taking any drugs or medications, either. Are you a nurse? What kind of a drug is that? Are you experiencing the Eylea injections? Are they helping you?
Many thanks,
Bunny1756
BJ00RN,
What you have written here is very meaningful to me as so much everyone else has written, Are you a nurse? I am sensing this. “I have a feeling that when you build experience and confidence you’ll do fine and you’ll end up feeling like you wasted time worrying about it.” This statement resonates greatly with me, Have you had multiple injections? How has your experience been, before, during and after?
Many thanks,
Bunny1756
Hey I'm sorry for a late reply. I am NOT a nurse, so my drug recommendation is to be discussed with professionals. However, I do have a lifelong experience with serious deceases, including two times cancer (been poked with needles pretty much everywhere on my body through a lifetime..) I also have four separate diagnoses on my eyes, epiretinal membrane (with a blindspot, and can't read text with my right eye) two types of glaucoma (close angle, and pigment), cataracts and massive amount of floaters. And I'm "only" 50 years old btw. So I do have a lot of experience with same-day surgeries, both laser and traditional surgery while awake. Oxazepam (a benzodiazepine which should be used only for one-time-use generally) I have only used for my cataract surgery (and when I go to do work at the dentist..), it's a good drug for me and has been a great help, but this is a very individual thing that has to be discussed with professionals. AND, I'm sure you'll do fine without it either way. Anyway, as I said, I have a lifelong experience with health problems, but I've found that we as humans tend to rise to the occasion, and things end up not as bad as we sometimes tend to fear. Oh, and I was also misdiagnosed with AMD, and had to go through an acceptance phase, and thus I ended up here. I made it through the massive AMD panic phase and felt relatively good in the end before the mistake was cleared up. I love life despite all my problems (and even though I still have some bad days). Two very good tips before I go: Exercise breathing techniques to relax your shoulders and muscles in the stomach area and to do away with shallow breathing, it's a VERY powerful and underestimated technique to use when you have anxiety. And a general tip: Every human being should study cognitive therapy to build the best collection of tools you could ever put in your toolbox, trust me. Best of luck
BJ00RN,
Thank you for your letter. The reason I asked whether or not you were a nurse was because of the “rn” letters in your screen name. I know someone who is a nurse who uses “rn” after her name all the time. I think you are amazing, in light of the medical challenges you have encountered. Have you had cataract surgery to remove them?
I dealt with a great deal of medical experiences with my parents. I too learned a great deal. I do not like being the patient. I am alone now with no one to help me. This has made me very cautious, careful and worried. I do not like taking drugs either. I know about the breathing as that is a very big part of my life, actually. I can move an air column at about 90mph between breaths. The time is fine. I am up around the clock lately.
Thank you so much for your help.
Bunny1756
Hi Bunny1756,
I have just been reading your post, and would like to offer you a few words of comfort. I cannot comment upon eye injections, as I suffer from dry AMD. However, I can understand how terrified you must be feeling about a forthcoming procedure. I, too, like you, read up an awful lot about eye conditions, and we cannot deny that there are complications attached to most procedures. Your ophthalmologist, even though he may sound blunt, is at least being honest with you. Over here, in the UK, most physicians will not tell you about any possible side effects. Whether that is for the good, or not, is debateable. However, I can tell that you are experiencing major panic attacks, and they are devastating. You should be under medical supervision for those, as I, too, suffer from these myself. Try looking at the problem like this, if you don't have any injections you could lose some vision. If you do have any injections, then you could maintain your vision for quite a while, indefinitely. Yes, you may experience some minor side effects, but definitely not blindness. Trying to explain to sighted people, or those who do not have eye complaints, is like trying to make a cup of tea, via using a chocolate teapot. How lucky they are without not realising it. I know that you feel alone in all of this, as panic builds its own prison. But know that we are all here for you, and an email can quickly skip an ocean. Big Hugs
Bunny1756 in reply to
01776,
You are wonderful and many thanks for your letter. I am just very very frightened, but you are all right. Losing sight is worse or perhaps nothing will help, I am making an appointment with another retina specialist today and I will try to keep it.
Bunny1756
Ask your retina specialist how he does the procedure. I get injections in both New York and Florida as I am a snow bird. Some only give you numbing drops while others will give a small injection of lidocaine. With the latter you feel nothing. I changed Drs both in New York and Florida to the ones that use the lidocaine. I've had countless surgeries and procedures and I was still extremely scared for the first injection. Now they don't bother me at all. Feel free to pm me if you like. Butch
Hi, Bunny. I was just as terrified as you ,so I called my G P and asked for a prescription for valium( diazepam). I take one before each injection and it helps a lot. I have had 12 so far. Good luck ,love.
Hi Patio,
I am really not a drug taker. I may opt for Advil, but I will ask first.
Thank you,
Bunny1756
Patio,
Are the injections helping you? Is this the Eylea medication? How is the experience during and following?
Many thanks,
Bunny1756
Eylea yes. My wet md has got no worse but no better. There is no pain during the injections. Sometimes there is stinging for the rest of the day. Honestly you need not worry. Take heart.
I am in the USA. We have much greater access to quick care here. All of my encounters with retina specialists and staff have been good here. Consider asking your primary care physician for something to help with anxiety for a while until you adjust to this new diagnosis and treatment. Tell yourself that other people take these injections and I can too. If you are a senior citizen look into senior citizens benefits in your community for transportation help. Start attending worship services on whatever faith you are. If you aren’t sure, then start attend different ones until you find yours. Likely you will find a place there where you can make friends, help others and they can help you. You may ask me if you have specific questions regarding care in the USA. I appreciate this site from GB and the friends on it have been so helpful.
Alalex101,
Thank you for your kind note. Nice to meet someone in the USA too. I do not like to take any drugs. I never use primary doctors and would never take anxiety drugs. I just need caring, kindness, and helpful , warm encouragement. I have found that here
Over many years I learned primary doctors and general practice physicians were taking too much upon themselves and making a tremendous amount of mistakes with my parents......terrible mistakes which created complications and consequences...l could write the book on this, From that point, I only brought my parents to specialists in the area needed.....cardiologist, endocrinologist, opthomologist, pulmonologist, etc. This was the best solution for us. I am using our county transportation for doctor visits. Thank goodness for this service, because I have no one else. It is a miracle for me. In what state are you located? I am in New Jersey.
Many thanks again,
Bunny1756
Hi again Bunny,
I think your post has a record number of replies! Feel the compassion and warmth and wrap it around you - a wonderful security blanket. X
How lovely that folk from the USA have replied to you offering their 1:1 support - they understand the health system there so you now are not completely alone - I do hope you take their help .
Ugean has given you their email. Wonderful!
Butch 51 has kindly said you can pm them (Do you know how you can personal message individuals like Butch51 via this site? Click on the speech bubbles in the header).
Plus the Mac soc has given you links to organisations in USA you can contact. I hope you do.
I don't think its possible for Mac soc to tell you who on here is from any specific country. This is just a global forum.
Regarding Facebook macular pages, maybe a library or IT teacher at a local school could show you? If you can use this site then it will be easy for you.
Let us know how you get on with the new specialist. Good luck.
I see you don't go to drs for meds etc but please do consider asking for therapy. I can recommend CBT ( cognitive behavioural therapy) and NLP ( neuro linguistic programming). Kindness, caring and consideration from others is always good but can be just a bandage on a festering wound - therapy can help to heal it. I sincerely believe you need healing from the pain and loss in your life. I have experienced loss of over 30 people including the wonderful people who raised me, my sister, and dearest friends, and understand how it can affect the mind and feed the need to control things which can lead to panic states.
I also found one of the best ways to deal with feelings of being alone (which can happen if there is someone in your life or not) is to go do something for someone else. Your church or local charity may welcome you as a volunteer and I guarantee you will feel better, you may even find a new friend who wants nothing from you but your friendship.
Don't let the fear of an unknown future spoil the possibility of a beautiful today. X
Bunny1756 in reply to
Thank you again for your kind letter.
From what you described, things have not been easy for you either.
There is nothing for me that can bring back my parents. I know exactly what I need....a family....caring and compassion, love and security, sharing with people who care about me.....everything I had with my parents. Going through medical trauma completely alone frightens me terribly. Nothing else can help. I have dealt with other things, but my parents were always there for me to help me through it. I was not alone. I have always helped everyone and anyone who asked me.
Religious organizations for me are now “a thing of the past;” a complete “dead-end,” I have tried. Around here in my “religious world” priorities are only for their members.....families....mothers, fathers and children. The other attention is focused on people with a great deal of money. Absolutely nothing for me. Holidays and religion for me alone, no longer exists.
When my father passed away, I called the religious organization where my parents belonged and paid membership for 62 years. My mother wanted them to hold a service in our home. No one responded or showed up. My mother was so upset over this, she dropped her membership. When I lost my mother, I had to hire and pay a complete stranger who did not know us, to lead a small graveside service.
I had beautiful times when my parents were with me. They made everything perfect. I stopped trying that route alone, a long time ago.
Thank you again and I wish you every happiness,
Bunny1756
in reply to Bunny1756
My heart weeps for you x
Organised religion is not for me but the one you describe does not sound as if it is run by anyone with a shred of humanity.
I find my joy and peace in nature and the beauty and timelessness of this amazing planet we inhabit. A true cathedral and place worthy of worship.
Do you have any pets? Animals can be a huge source of love and companionship.
It is interesting that here in the UK it is quite common to have a service led by a stranger who has been paid to do so. Though I suppose that would be hard if there had been a prior church relationship that had foundered. Take care, good luck with your upcoming appointment x
Bunny1756 in reply to
Eyesight,,
So you can understand. ....
Yes, I have a pet...a darling, adorable, cream and white, part Angora, fluff ball.....Netherland Dwarf Bunny. She’s about 3 lbs, five years old (:3
I have a little while before I see the retina doctor....I am not looking forward to it....I did this because of the help from all of you.
Take care and thank you again,
Bunny1756
TwasBrillig in reply to
That was a wonderful post, Eyesright!
One thing I’ve learned recently is that while we may not have control of what life may throw at us , we CAN control our attitude to these things. I’m not saying it’s easy - far from it. I have to work at it but it really helps.
When I’m having a particularly bad time I say to myself “you can choose whether to let these feelings take over or you can say- I can’t turn back the clock or make this disease go away but I can enjoy the things I do still have - whether this is relationships, my sense of humour, the sound of birdsong, the warmth of an unexpected sunny day or simply the knowledge that there are communities like this one that genuinely understand and care”.
Yes, I have days when I have a good cry and feel sorry for myself and grieve my loss - the things I can no longer do. And this is perfectly okay but then I tell myself I am not going to let this condition take over. I concentrate on what I still have and the things I can still do. Xx
in reply to TwasBrillig
Thanks x Yes, twasbrillig ( great name btw), took me years (decades) to understand and accept that we do indeed choose how we feel about things. And gosh have I had some opportunities to practice ha ha .
As you say, not always easy to choose to be happy but definitely worth the effort.
I wear a mobious strip pendant engraved with my mantra "there is no way to happiness, happiness is the way" (Thich Nhat Hanh vietnamese Buddhist monk and peace activist). Also a bead that says " Let it Go" - Disney, Frozen lol.
Here's to days filled with joyful acceptance, overflowing with positivity, and on the bad ones a plentiful supply of good chocolate, lots of bubbles for the bath, and a weepy film!
TwasBrilling,
Wonderful advice...I am trying very hard to follow it.
Hugs,
Bunny1756
Hi Bunny1756. I have been getting eye injections from a retinal specialist for about 7 years. It's treating macular edema from brvo. I have lost central vision in that but I still have peripheral. For me it is a painless injection that is saving part of my vision. The eye is numbed first and the injection is fast. The only thing that most of us have discomfort is the effect of the betadine. It is used to prevent infection. I have come a long way from my first encounter with betadine. The assistant rinses my eye thoroughly and then uses drops for tears. I rinse it out with sterile eye wash when I get home and use artificial tears. I have very little discomfort and it lasts only a short period. If it means maintaining vision,it is worth it's weight in gold. I hope this helps.
Codeblack7,
Thank you so much for sharing your experience with me What does “brvo” mean? Everyone who is here is helping me so very much.
Warm blessings,
Bunny1756
Sorry Bunny
It stands for Branch Retinal Vein Occlusion
Codeblack7,
That is alright. I am very new to all of this and still have lots to learn. Have to be careful with abbreviations
Thank you,
Bunny1756
My mother gets Eyelea for macular degeneration in both eyes.
Codeblack7,
His long has your mother been receiving the Eylea? How is her experience during and afterwards?
Many thanks,
Bunny1756
She has been getting injections or about 4 years. She has been doing great. Her vision has been stable. The procedure itself seems to have become more streamlined. When I first received an injection the process took longer. She does great.
Codeblack7,
I am very happy for both of you. I hope I will be able to say the same.
You have all really helped me to get myself to do this
Many thanks,
Bunny1756
My article in SIDEVIEW; SUMMER 2016 ISSUE 116, told my story as it was then. The procedures have vastly improved since that time and I attach this for you: -
To See is to Believe
Anthony Clark
So there I was in the Aged Macular Degeneration (AMD) Eye Clinic waiting room at York Hospital, never having been there before and a complete stranger, in corridor A.
Was I meant suffer the same scourge as Mum? What had I done to deserve this?
Being a practical man I asked myself, “How was I going to get over the problems she had, and all these other people sitting about; did they have AMD? What was wrong with them?
Was the whole world going blind? I was scared.
My mother had died three years earlier at 93 and she had AMD and became blind during her last years. With her blindness she felt so helpless having been so active and so self-reliant in the past. She had to trust others and that was too concerning for me situated 70 miles away; she had lost a considerable amount of money in her little bungalow in the last weeks of her life.
I had previously been treated at Addenbookes Hospital in Cambridge, with the Lucentis AMD drug and experienced an allergic reaction to chloramphenicol, being an antibiotic treatment used for bacterial infections. This was the usual practice for AMD patients in 2011.
I was now in a different hospital, a different medical team. I was definitely worried, but I had to keep my sight telling myself that I must sit this one out and wait my turn. Am I foolish to be worrying?
Wheelchairs were in abundance, elderly folk with walking sticks and others were just reading. What are these people in here for, what were they thinking about?
There were youngsters there as well, but they were generally pushing and assisting their elders.
The waiting seemed a lifetime, until the nurse called my name, but it was only thirty minutes since I arrived.
My blood pressure was taken, which seemed alright I was told.
I then had to read the chart with my distance glasses to test the status of my eyes.
The nurse applied several drops to both eyes in preparation for them to be photographed and to enable the optometrist to assess their condition.
Wrist bands were clipped to my left arm stating who I was and what I am allergic to.
I was advised that my vision would be blurred due to the drops and to wait in the corridor B!
Everything seemed to be controlled and this made me feel much easier, but I still get up tight at the thought of being injected.
I continued to read my notes and write my life story draft whilst I was able until the blurring made these not possible. I was beginning to feel helpless again and just had to let things happen. I am determined to finish my life story this year and hope that my eyes will back me up.
The NHS is certainly helping me to achieve this; I have nothing but praise for the people at York Hospital.
The potential patients were directed from room to room, chair to room, room to chair with the busy nurses keeping their watchful eyes on them and carrying their brown folders to the end of the corridor.
I knew the nurses by their uniform and then I was aware of additional people who did not wear a uniform and I considered them to be administrators, later to establish them to be optometrists.
After another thirty minute wait I heard my name being called again, somewhat difficult with one deaf ear and the other performing below par, but I need to be aware and not let these defects become apparent. Stop worrying about yourself and think of the others who are worse than you, I kept saying to myself.
My next outing was to the photographic room to record an accurate condition of my eyes. The desire to blink was very strong due to the drops and the bright lights, but this I learned was quite normal. The image captures successful I was then directed back to corridor B, where everything was seen to be blurred and colourful due to the bright lights.
Back in corridor B I became aware that my next port of call was the optometrist’s room.
Occasionally I would chat with my waiting patient neighbours, who lived all around York, so I learned a bit of the local geography being a newcomer to the area and the north of England.
Most of the patients seemed to be suffering from AMD (aged macular degeneration), but some had other conditions, including cataracts. I found the mood with these newly found acquaintances was quite buoyant even though some of them had suffered psychologically, which made me feel more confident about my condition.
I had had some ten injections whilst in Cambridge, so I had a rough idea what to expect, but one man said 46 was his total so far.
My brown folder that the nurse had been carrying found its way to the optometrist and the tests began; look left upwards, downwards until the cycle had been completed for each eye, and again if necessary. The lights seem even brighter and dazzling, but you know it is in your own interest.
I learned here that York Hospital generally injects a different drug to that of Cambridge, being Eylea. My initial thoughts of changing from Lucentis to Eylea were of travelling down an unknown path again, but as I had started I will finish and leave it to the experts.
Every department I entered I felt a distinct feeling of confidence from the hospital staff; I wish that my mother could have experienced this. I wish I could help the staff; I am able-bodied, as well as a 75 year old can be. I have a few problems, but I could help in some way, I know I could.
My forehead was given two black spots, one bigger than the other, about 30mm above my eyelashes by the optometrist to indicate to the doctor who would administer the treatment, as to which eye had to be injected and to what extreme. I was ready for the injections! It might be a possibility that in future my 4 week injections could be extended to 6 and in both eyes. “Think positively you fool,” I kept telling myself.
The sight appears to have slightly improved in the daylight, but not so when it approaches darkness.
After this I was directed to corridor C, where the consultant doctors’ treatment rooms were situated. Still only one and half hours since my appointment commenced.
The green clad doctors passed from room to room awaiting their next patient as directed by the nurse, collecting my records file as they passed.
At each appointment I see my file becoming larger and larger, although smaller than the Cambridge file.
I am pleased I am here, well almost.
My name was called once more to enter the treatment room and my heart was in my mouth. I hate injections at the best of times, let alone my eyes being pierced. I shudder at the sight of persons and animals being injected on television every time I see them, but I know it has to be done.
I lay down on the adjustable bed; stating I was who I said I was and was I born on a certain date, which eye was going to be treated and what I am allergic to. I sometimes think I was going through a dementia test, but I do have a fear of being injected.
This time both eyes were to be injected, but the right was first. Masses of eye drops in this one eye, anti-septic/iodine drops and the whole of my face covered with an eye access protection cover, which prevents the blinking eye or at most restricting eyelid movement.
A firm instruction; “Now concentrate your vision on the lamp above you and try not to move”. This is easier said than done, but try you must. One doctor tells me he is about to start the injection and I am ready, or as ready as I will be. I grip the side of the bed with both hands to a colour of white, or even whiter.
“Keep still Anton,” I tell myself and it is done. A dull ache and the visual sensation of fluid in the eye are quite apparent and I am asked, “How many fingers can you see?” Two sometimes, one occasionally is the reply.
I am cleaned up and I wait for the next doctor to inject my other eye in the next treatment room. I just hope I am advised on the timing of the needle coming my way.
Well it is almost; it makes me jump quite severely when I am not advised of the forthcoming needle and the rest of the procedure is almost identical. Phew!
I am cleaned up and escorted into the waiting room; given a cup of coffee and acclimatise to the revised me and then depart into the wide world again, where I walk to the bus for a couple of miles.
Interestingly, but quite noticeable was the difference between treatments at the Cambridge Hospital in 2011 and York Hospital in 2013. In Cambridge I was escorted to the treatment table by wheelchair, but there was nothing in York, which was quite acceptable.
The progress of AMD treatment appears to be galloping forward and is seems quite spectacular in 2015, when my mother in 2011 had no treatment at all.
The secret appears to be catching the irregularities in the eye at the earliest possible time, say in the first few days. My mother had a gradual deterioration in her eyes going back over 15 years and wasn’t able to be treated, especially at 93.
I am personally very grateful for my eyesight, for I can read, write and make wooden things. It is joy to keep it this way and I thank God for it.
That was how my article in the Maculer Society’s Sideline was published in 2016 and in now in 2018, having experienced major advances in progress in my treatment.
I believe that it is a matter of thinking positvely, difficult but essential. As Winston Churchill said, "keep soldering on", or words to that effect.
Nobe,
I understand; however, I cannot trivialize this procedure. My initial reaction; this is dangerous, barbaric and inhumane. This has not changed for me.
Bunny1756
in reply to Bunny1756
Feel the fear and do it anyway is the mantra of extreme sportsmen and us!
Bunny I've just found a website that helped me in the early days:
mymacularjourney.com
I've also messaged a member of this site who was involved with the journal, helping her friend Sue to write it. Dont know if she's still a member here as it's a few years since we communicated but I've asked if there's anything she can send via private message to you to help you.
Bunny1756 in reply to
Eyesright
Thank you so much. I am having such a hard time with this Have you read my last post? I am just liable to see the doctor, let him check me again, and not do anything further. Running out of that office or just not going is the only thing that can relax me. I am completely unable to trivialize this or trying to make it less than it is. For me, a needle injection into the eye is catastrophic. I told you; I am completely alone with no one to help me. I have no “safety net” and no one to help me if something goes wrong, I also have a very low tolerance for pain. I was thinking about taking 3-4 Advil (prescription level dose) before I go. This is just not for e.veryone. There is also a new medication called Beovu made by Novartis, that remains in the eye longer; therefore. requiring less repeat injections. I am going to talk to him about this.
The saga continues,
Bunny1756
in reply to Bunny1756
Hi bunny, yes, ive replied to your other post too.
Its not about trivialising or making it less than it is. It is without doubt a huge deal the first time.
Its more about making your frame of mind equal to it. And you absolutely can.
Check out the journal on the website, i really think it might help you.
At the end of the day it's your choice but I feel you need to make a decision one way or the other, this cancelling of appointments (3 so far?) isnt helping you, just prolonging the terror you feel and the stress generally cannot be good for you. Constant indecision is stressful in its own right.
For now try to make it on the 19th and resolve to make a decision then.
Bunny1756 in reply to
Eyesright,
I saw the retina doctor twice; examinations with no injections; then two appointment attempts to go through with injections, which I cancelled. Now the third appointment set for February 19. The office does not care; complete indifference.
Bunny1756
Bunny1756 in reply to
Eyesright,
I scanned through this lady Sue’s website. I did not find any mention of eye injections.
Bunny1756
in reply to Bunny1756
On the header click Sues Journal
Then on the right hand side click Cognitive Therapy
The page is about Cope Ahead Strategies
The example given is going for an injection.
When i found the journal 4 years ago it wasnt such a fancy website, i found it easier to read then but now there is much more on it so i guess the site evolved to cope with that.
I pointed it to you because of the psychological coping aspects she writes about which arent inj specific. But will help with inj fear.
Also on the home page is a link to Resources which you might find useful as other sources of support (I noted there are links for telephone and email contacts as well as support groups in the US).
Also on right hand side of page is an email link, you might want to get in touch for direct help I think they will email you specific pages off the website.
Bunny1756 in reply to
Eyesright,
Thank you so much once again. I will read through that site again today.
I hope you realize it is just this eye injection procedure that has me paralyzed. I had a flu injection a few months ago. I never even thought about it. I do that every year. Routine. I had blood work done in November and will do it again in a few weeks for my wonderful endocrinologist who I like very much. I have had injections for dental procedures. But into the eye?? I could not believe this! This is a completely different matter, just because scientists and drug companies have not figured out DROP delivery that can penetrate into the posterior chamber of the eye? It is imperative to STOP needle injections into eyes!!
The doctors and other medical professionals would be relieved as well! I will tell everyone here something very, very soon. I told you I know things I am positive you do not know. I will tell everyone very soon
Take care,
Bunny1756
in reply to Bunny1756
Yep, I realise it's just the eye injections that freaks you out. One day all the stem cell research, genetic work, and drop delivery testing will come to fruition, I'm grateful the injections will preserve my sight until then.
Look forward to your news!
Bunny1756 in reply to
Eyesright,
When you have these injections, you have no pain afterwards at all? No critical problems? No bleeding, swelling or blurry vision?
Bunny1756
in reply to Bunny1756
It varies. I had 25 lucentis/eyelea. Plus 7 ozurdex implants which involve both anaesthetic injection and the implant inj. So 2 for 1!
No critical problems with the inj at all.
I have 3 friends also gone/going through this and theirs have been fine too. A work colleague's grandfather has had over 70 with no issues.
My first inj they pressed too hard on eye clamp which was awful but I didn't know to tell them as didn't know what to expect - hadn't found this site!. Next time I told them and it never happened again. If I ever felt too much pressure on eye before the inj I would speak up immediately and i know they would back off.
I've mentioned before had some pain after from the iodine but once learned about good washout in clinic and home it's been fine.
They have hit blood vessel a few times. Cant be helped as they cant see them ( and I have a condition that means my arteries are tortuous so more likely to be hit). Only one was really sore but paracetamol and soothing drops sorted it. I now routinely take 2 paracetamol an hour before inj and after, regularly for that day up to stated limit just in case. Now just get a bit achy around the eye sometimes. It's less than a simple headache , isnt constant and doesn't last beyond a few moments.
I've had more than one inj that was completely fine. Nothing at all. Like I hadn't even had it done.
My vision is always blurry for 24hrs or so after injection. Then it clears.
I think my experiences are pretty normal.
Bunny1756 in reply to
Eyesright,
Thank you again. I need to hear this as I do not know what I would expect. I am worried about pain, possible eye pressure, and anything else. Finding you and this site has been a miracle for me (:3
We will see...
Fondly,
Bunny1756
Bunny1756 in reply to
Eyesright
I read through the visualization. But this does not deal with the reality of the situation...what if there are complications? No mention of this or
just how dangerous this is
Bunny1756
in reply to Bunny1756
The reality of the situation is what if there are dangers/complications (eg sight loss)from not having the inj? Who will be there to sort them and what can they do if you wont have your eyes touched?
You have selected an expert precisely so that he can deal competently with any issues immediately they might arise.
Statistically very low probability.
I would imagine more chance of falling down the stairs at home. Do you not go upstairs just to avoid falling down them?
The journal entry is about the psychological aspects not chapter and verse of having an inj.
You have to extrapolate the visualisation - imagine each scenario you fear and your doc dealing with it.
I don't know what else to say to help you Bunny but do you realise that every time you fixate on the 'bad' things you are essentially training your brain to only think of those things.
Repetition is how we train animals and it works on people too even if we don't consciously know it.
I'm not saying ignore the possible risks but balance them with the potential benefits. I know you say you can't but if you could how would you go about doing that?
I would like to challenge you!
See if you can spend a whole day thinking only about the positives an injection can offer you.
X
Bunny1756 in reply to
Eyesright,
I will try.....promise. Challenge accepted, starting now (:3
Bunny1756
Hi,
My name is Linda. I'm in the US, too. I run a Facebook group called Our Macular Degeneration Journey where there are a LOT of members all over the world (most in the US) who have regular injections. I understand your fear, I do. In the 4 years I've been working with people who have macular degeneration, I've been told time and time again that the thought of having them is worse than the reality. People just can't imagine how they could endure such a thing. But they do and the GREAT news is that they have saved the vision of MANY, maybe MOST, people who have them. The sad reality, too, is that without them, people lose all central vision.
I do what I do with this Facebook group because my friend of 40+ years Sue developed AMD. She has the advanced dry kind called geographic atrophy which means she has a blind spot in each eye. There is no treatment for this like there is for wet AMD. Despite that, she lives a FULL life! She works as a psychologist, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and and new friends she’s been making along the way!
We have a website where she writes about how she has created this 'new normal' life. I encourage you to go and read how she's gone from having panic attacks when she realized that she could no longer drive or do things the same way as she always has to a 'new normal' life that is almost exactly the same as it was before.
It's important for me to say that when you have these injections, your vision may never be as bad as hers. There IS treatment for wet AMD!
This is a GREAT group! I know lots of people with AMD who are in several of them so I invite you to join my Facebook group - just answer a few simple questions, that's all you have to do:
Our Macular Degeneration Journey
Also, I encourage you to go to our website and read how Sue got through her toughest times. As I said above, she's a psychologist and she writes about how she used the therapy she knows on herself so that others can use it as well:
It's important for you to know that you are NOT alone!!! There are lots of people going through the same thing with the same fears. We CAN help you get through this!!
(((hugs))) Linda...
Linda,
Thank you for your letter. I have never used the Facebook system and do not know how to communicate there. I wish I had someone to go with me to deal with these injections, I am completely alone with no one to help me. Reading the list of side effects frightens me terribly. On top of that, the injections must be repeated. I have a very low tolerance for pain, If something goes wrong, I do not know what I will do. I know I need the medication, but needle injections into eyes is just paralyzing me. The reality is I AM ALONE. I am a priority to no one.
I do not know how reading about your friend will help me. It is wonderful that she is doing so well. I am going to see a retina specialist on February 19, and try again.,
Thank you,
Bunny1756
Bunny, tell me a little about where you live. Do you go to church? Do you mind me asking how old you are? How about family?
Sometimes asking these questions can help me better to help you. If you tell me where you live, I might be able to find a macular degeneration support group for you to contact, for example.
I will tell you some things that I hope will reassure you about the injections:
- My Facebook group has over 3,000 people. They're not all active, of course, but there are many who have wet AMD who share their stories. There are things I hear over and over:
- People who do not have the injections most often lose all their central vision or at least most of it.
- People who DO have the injections frequently are able to keep their vision stable. They drive and do everything they did before the diagnosis.
- The thought of the first injection is worse than the injection itself.
- Yes, there are things that can go wrong but mostly it's that their eyes are scratchy the day after or things like that which go away.
- The injections don't hurt: you are given numbing drops before it. It's also a teeny needle even though some people imagine the big ones you see on TV.
I understand that you feel very much alone. Tell me more about you and let's see if we can't hook you up with someone or some group that can help.
OK? Linda...
Light2sight5153/Linda,
I just saw this note from you tonight. There are questions you are asking me that I cannot answer here. I will tell you what I can.
I live in New Jersey, USA. No family or anyone who cares about me any longer. I am completely alone now. I had two amazing, wonderful parents I loved dearly. They both passed. I took care of them around the clock whenever they needed me. They took care of me. I miss them terribly. I hear their voices inside of me around the click.i use the radio and the television as companolionship and dream of things that can never be.
There are no religious organizations for me. They are useless. I do not know how to handle Facebook and never used it.
Bunny1756
Bunny1756 and others in the US -
There are many wonderful groups that provide education & support in the US. These are just some of them:
AMD Alliance International: 877-263-7171
American Foundation for the Blind: 800-232-5463
American Macular Degeneration Foundation
Association for Macular Diseases/Ophthalmic Edge partnership
Macular Degeneration Foundation 1-888-633-3937
Macular Degeneration Partnership, 888-430-9898
Macular Degeneration Association, 855-962-2852
MD Support: Support group list and Video: Learning to Live with Low Vision, 816-761-7080 (toll call)
National Eye Health Education Program, English and Spanish
Vision Aware
I don't know where you live in New Jersey, but here are some support groups. Unfortunately, this webpage isn't as up-to-date as we'd like but you might be able to find one-->earsforeyes.info/ears/tblLi...
Here's another list of US support groups:
visionaware.org/directory.a...
I write articles for the site maculardegeneration.net which is another resource I recommend. I wrote this article because I KNOW that many people are alone and are concerned about the future. I offer suggestions as to where you might find others. Creating a circle of support is really important to creating a great life despite macular degeneration. maculardegeneration.net/car...
Bunny, I think that if you explore some of these resources, you can find others like you who are facing this journey and with whom you might connect.
Hope this helps. Linda...
Light2sight5153,
Thank you so very much for this list of organizations. I will begin to research them and tell everyone here if I find something or useful help. The day I located the Macular Society, I found the Foundation for the Blind/USA and telephoned them. This organization does a great deal of advertising, even on television. The woman who answered told me they just collect donations. She would not detail further. Resources are very different, no matter how they seem.
Thank you again,
Bunny1756
Most if not all of those organizations have website so you can search by their name.
One thing that I want to stress is the importance of getting treatment. Yes, there can be side effects, but to be honest, there are side effects to just about anything we put into our bodies. We have to weigh the risks vs the benefits. In the case of wet AMD, the benefit is that with treatment, most people can keep their vision stable and can continue to do most of the things they did before the diagnosis. Without treatment, there is a high likelihood of losing all central vision.
Hope you find what you are looking for. Linda...
Lighttosite5153,Linda,
Thank you again. I do understand, However, the doctor said to me, point blank, “ I have had patients go blind from this and it does not work for everybidy.” I am wondering if patients can see any change after one injection? I realize the Eylea medication wears off after about 4-5 weeks.
Thank you again,
Bunny1756
Hi again Bunny. My Opthalmologist told me before my first injection that for a while after the injection my vision will get a bit worse but after that, it will get better and that's exactly what happened and it happens after each injection so I don't worry about it. Just a thought Bunny - have you tried meditation? x
Hi Springcross,
Thank you again. How long does it take for the vision to improve? None of those “therapies” are going to help me. Trying to absorb putting a needle injection into my eye is so very dangerous to me. I am trying not think about this whole ordeal. It has become impossible. If a patient needs injections in both eyes, is this done at the same time?
Thank you again,
Bunny1756
Hi Bunny. It's a few days to a week but it's not a bad worsening, it's just slight and then before you realise, it's OK again. Some of the elderly people where I go have both eyes done in one session - they don't bat an eyelid about it (no pun intended) - they're used to it. I used to sit waiting for mine watching these elderly people and thinking how brave they were compared to me, as in the beginning, I was so afraid. (Listen to me referring to elderly people when I am almost 71!!!) 😊 Try to push it to the back of your mind for a few days Bunny, you have another five days so try to relax - maybe play some nice soothing music and concentrate on that. Take care.
Springcross,
Thank you so much for every word you and everyone else here says to me (:3 I am trying not to make this the center focus of my world. I have gone for other needles and never gave a second thought to any of them. This is so very different for me.
Music? You have no idea, as yet. Music is truly my entire universe
A Million Blessings to All,
Bunny1756
I hope your retinal specialist also told you of the many successes of treatment for wet AMD! If not, that sounds very irresponsible to me.
A more balanced representation is that 1) side effects and complications are rare; when they occur they can be treated; 2) 90% of all central vision loss from AMD is from untreated or under-treated wet AMD; 3) the effectiveness of the anti-VEGF treatments' in stopping vision loss is high. If you go to this link and look under 'Wet AMD, you'll find the results from research into Eylea.
It is true that they don't 'work' for everyone where 'working' means stabilizing vision . However, there are now 4 medications a retinal specialist can try: Eylea, Lucentis, Avastin and the most recent one Beovu. Doctors can switch to another if one is not working as well as they expect. In the 4 years that I've been working with people who have AMD, I have not had anyone tell me that the injections 'blinded them.'
As far as the schedule for treatment, many RSes start out with an injection a month for 3 months then extend the time between injections. The new medication Beovu has been shown to work for 12 weeks.
As far as whether a person will know if an injection is helping after the first injection, the purpose of these injections is to first 'dry up' any bleeding to prevent vision loss. Success isn't based on vision improvement, but the results of the retinal scans that the RS will do. Some people have improved vision, some do not. The time between injection varies from person to person.
I totally understand your concern. Having an injection in the eye sounds barbaric. Many people tell me that the thought of them before the first one is worse than the reality.
I've been doing research into macular degeneration for 4 years. I have to be careful not to succumb to what's called 'confirmation bias.' We humans tend to look for evidence to confirm what we want to believe and ignore the rest. My advice is to make sure you don't let your fears cause you to make decisions based on them.
I recommend having a list of benefits vs risks. I will tell you that my research and experience has shown that the best chance anyone has to not lose all central vision is through anti-VEGF treatment. If your retinal specialist doesn't instill confidence in you, get another opinion.
Not sure what else I can offer to help. Best of luck. Linda...
Linda,
Thank you for what you have written. I will be seeing the doctor on February 19. I am completely alone with no one to help me. It is a big world, and I am totally alone. I am going to make an attempt to try it, at least once. I am shivering already. I wish I had someone to be with me: of course, I do not. “March to the Scaffold.” (Hector Berlioz).
Thank you again,
Bunny1756
What an excellent, informative post!
One of those that everyone on this protocol - including newcomers - should be able to find easily. I’ve learnt some really valuable information. Thank you light2sight5153.
I'm glad I can help.
I hope that you will look at some of the resources that I've given you to see if you can find some support so that you do NOT have to go through this alone. I have seen members in my Facebook group reach out to others in their area...they've asked for help and they've given help as well. Some find it easier to ask then others. Those who have asked have gotten help.
I don't know how old you are, but if you're over 55 (I'm 66 so I'm WAY over), there are senior groups all over the country that provide assistance if needed. There are support groups where people get together in person, by phone, or online to help each other.
I told you a little about my friend Sue who lives a very active life despite advanced dry AMD/geographic atrophy. There's no treatment for it so she has lost vision. She's a psychologist who has been writing about her experiences and sharing a type of therapy she employs as a counselor and has used herself to create her 'new normal' and to cope with the challenges that come with being visually impaired. This is just one of her pages that might help you as you look for the support that you need:
mymacularjournal.com/home/a...
Best wishes, Linda...
Light2sight5153,
I need an answer to this: To those with problems in both eyes: Are injections given in both eyes at the same time?Linda, there Is no one and nothing here to help me like you describe. No one is going to go with me or help like that. I am really not someone for a senior center.
Thank you again,
Bunny1756
Hi Bunny .... It is frightening to be sure, but you will worry less about the injections than you will about the consequences of not having them. Believe me, the needle is not as bad as it sounds and takes only a split second to do. Your eye will have had drops prior to the injection to reduce any pain. I have had many and although I would sooner do something else, getting it over and done with is better than not. It is helpful to speak to your doctor and to understand there are thousands of others who have the injections. This is a good site to connect with and everyone is rooting for you. Good luck .... Penny
Shitdisturber/Penny
Thank you so much for your kind note I am going to try this, once. I need to hear all of this. I have read the letters over and over. I have a fine opthomologist/eye surgeon and I trust him. Otherwise, I would never let him touch me. We will have a solid discussion before he does anything. Mostly, I need to know exactly what I am supposed to do if I have any problems. I am going to take at least 3 Advil beforehand, I have a very low tolerance for pain.
What a nightmare this is for all of us, I am so tired of crying We all have enough without having to deal with this! I am working to stop it, once and for all. It is imperative to STOP needle injections into eyes! I will share everything that has been going on with everyone as soon as I can.
With many blessings and thanks,
Bunny1756 (:3
I've been getting these shots every month or two for the past 8 years. At first it was scary, but make sure the tech numbs it really well. You get used to it. Now, they give an numbing injection for the real shot and I really don't feel anything. I used to have pain about 5-6 hours later and I would ask for an eye patch and just go to sleep. When I woke up the next morning, all would be fine. I don't even look at my eyes for several days after the injections. It's worth it to keep your vision. But seriously, I have no anxiety any more.
My mom of 83 has a fear of needles but has these injections every month for past 3 years. If she can do it i am sure you can. The people who administer these are very well trained and i am sure will take into account your fears. Please do not end up losing your sight. We are kucky to be iffered these on NHS as when we enquired private costed £2000 per injection! Good luck and send hug
I dont like them either but I need them.I always explain I am nervous and the doc or nurse is very good. If you ask your GP he can prescripe meds to relax you .Hope this helps.Goid luck x
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