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Joined: 11/21/2015
Posts: 237
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Hi all, I'm having vision loss. It has gradually occurred with estrogen and steroid use. Now I am diagnosed with epiretinal membrane and given option of vitrectomy. I am scared that it will cause lots of complications since I periodically get irritated eyes. I have some family that mentions wait til followup and others say do it early on. Does anyone have experience they can share.
I am upset because I live alone and have no significant other nor children. I wanted a plan for when I cannot see but some family thinks it will restore my vision. I have not found research that states that. Sounds like surgery limits the damage. I am scared of my future independence.
TThanks for reading
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Joined: 4/22/2017
Posts: 338
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I have epiretinal membranes (ERMs) in both eyes, probably due to prior retinal tears. I also carry my parent's genes for Macular Degeneration and frankly, that is more frightening than my retinal tears or the ERMs. My retinal specialist states the ERMs are not yet severe enough to perform surgery. She works at a top ranked university based hospital, so I'm going to trust her opinion.
I wouldn't pay much attention to family members. They are your eyes and one of the risks is blindness. If unsure whether to proceed, I'd seek a 2nd opinion from another retinal specialist.
*I should add that I also live alone and made it through two cataract surgeries. I had someone stay with me the night of the surgery and drive me back to the center for follow-up the next morning. The rest of the week I was on my own.*
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Joined: 11/21/2015
Posts: 237
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Thank you for the reply. The retina office seemed like they were required to tell me the surgery is an option and that it is OK to monitor the progress. I noticed a change a couple nights ago and panicked. I am not prepare for vision loss. And I may move when people poke my eye resulting in a problem with the procedure. From what I read it is like a week recovery. And need to be face down.
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Joined: 12/15/2011
Posts: 18704
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I am not familiar with epiretinal membranes but there seems to be good information on the internet. Have you had an OCT to determine the extent of the scarring? If you decide on the surgery, you can prepare for the postop period.
Iris
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Joined: 11/21/2015
Posts: 237
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Actually recovery maybe longer than I think. My tablet won't let me paste the link to visionaware.org
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Joined: 11/21/2015
Posts: 237
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Iris when I asked for help for planning to survive vision loss, they called back Friday and just said call when you need assistance getting around. What a cr*ppy reply
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Joined: 11/21/2015
Posts: 237
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I am so depressed. I'm really struggling to function. I am scared to get the surgery. I guess most people would. My family is not helping me. I guess I will have to hire help. I left message for a friend who recently had to hire someone for their parent.
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Joined: 11/21/2015
Posts: 237
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https://www.visionaware.org/info/your-eye-condition/guide-to-eye-conditions/macular-hole/macular-hole-surgery/suggestions-for-maintaining-face-down-positioning/12345
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Joined: 11/21/2015
Posts: 237
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when I described the blurriness the lady who answered phone said sounded it was a cataract change but from what I have researched on web is towards the fuzzy like sample I found on web for erm. I sure would like to find those websites again. With image samples of what the patient is seeing.
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Joined: 12/15/2011
Posts: 18704
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From what I read there is a 95 % chance of either improvement or no change. Also complete blindness is not usual, but loss of central vision, which is bad enough. Did you read this website?
http://theretinagroup.com/epiretinal-membrane-surgery/
Did you have an OCT?
Iris
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Joined: 11/21/2015
Posts: 237
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Yes I did.
Wow the blindness part is a big scare. I do have fear of being unsteady. Perhaps I should wait til fuzziness is worse. So far my vision is not quite as bad as that man's face on the weblink I posted. Put changes happen overnight due to medicine and such. I guess I should have stopped estrogen last year. But who knows, it may have still deteriorated.
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Joined: 11/21/2015
Posts: 237
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I just dont know how to read these websites. I have seen distorted information on other health problems.
Heres the sibling reaction. Life has went from we will be there for you- it can't be that bad, to nil reply when I asked for helping setting up a care plan for myself. ( And there are nurses in the family. ) another person said get help from my counselor. I have no regular mental health counselor but have appointment with new one on Wednesday. Ironically I trust no one in my home... to a need to trust a total stranger in my home. I just don't know. I am distraught I guess.
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Joined: 11/21/2015
Posts: 237
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iris I don't see this 95% stat you are referring to. I see this...
If you elect to proceed with epiretinal membrane surgery, here are the outcomes that you can expect:
• 75% chance of improvement of symptoms
• 20% chance of no improvement of symptoms
• 5% chance of worsening of symptoms
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Joined: 3/25/2015
Posts: 1142
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Step, please go to another specialist and get a second opinion. Ask all your questions/have your concerns addressed. I think "knowing" vs "imagining" what could happen will give you some peace of mind.
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Joined: 12/15/2011
Posts: 18704
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I was combining 75% improvement +20% no change to come up with 95%. 5% show worsening of symptoms. Of course, if you are in the 5%, that can be a disaster.
Reluctant caregivers are of no help. I'm sorry your family are not more involved. I prefer professional helpers for myself.
How long has this been going on? Is it getting worse? A second opinion is a good idea.
Iris
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Joined: 4/22/2017
Posts: 338
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Epiretinal Membrane Surgery with vitrectomy does not require lying face down after surgery.
" Vitrectomy surgery is now done with modern small incisions that do not
require sutures. A small air bubble is usually left in the eyeball at
the end of surgery to help close up the incision site. This air bubble
will dissolve by itself after a few days. If there are no complications
that happen during the vitrectomy surgery, like retinal detachment, the
patient does not need to sleep with their face facing downwards. Special
posturing is only needed after surgery for retinal diseases like macula hole, or , retinal detachment."
https://eyeretina.my/2013/09/recovery-after-vitrectomy-for-epiretinal-membrane/
Did the physician actually recommend the surgery or are you anticipating the worse?
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Joined: 10/7/2019
Posts: 31
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Does one of your family has had early or late onset Alzheimer’s with those Problems?
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Joined: 11/21/2015
Posts: 237
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Iris, i see, thank you for clarifying. My mind is scattered because I haven't felt well.
BBethl, I think I will check my insurance for that, but 2 specialists showed their scan with the classic valley look.
TThank you badmoonrising, you give me hope!!
AAmelillo99, yes, my parent had vision problems too.  but only had cataract surgery. Continued to notice vision issues afterward.
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Joined: 12/15/2011
Posts: 18704
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Step, you mention that some of your family advise waiting and some advise surgery now. What has your retinal specialist advised as to the urgency of surgery? What has that doctor advised about post-operative care? You need specific advice, more than the general instructions on the internet.
Iris
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Joined: 11/21/2015
Posts: 237
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I was given optional back a couple months ago and followup in january. But said since it is not so bothersome than perhaps wait and see if declines more. My decline happened last Thursday after a different medication. My tablet was harder to focus on. From what i remember I wasn't given much post operative info. I called Friday to try to get a care plan in order since I'm 'my own man' in this, wanted to prepare with numbers for home care asstance, and the return message was 'call us if you need assistance getting around'.
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Joined: 11/21/2015
Posts: 237
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IIn fact I seem to remember they did say I will need to sleep head down. My bed is terrible so I was looking at possibly renting one of those massage chairs. Need to get provider phone numbers lined up
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Joined: 11/21/2015
Posts: 237
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Interesting that vision and possible blindness is on the estrogen medicine sheet. Even possibly causing dementia
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Joined: 11/21/2015
Posts: 237
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I don't see anywhere if a home care aide is needed in the home post surgery. I had assumed so. These are all questions I planned to cover by talking to the eye doctor office in getting a self care plan together but I was blown off. I hope my PCP office will call back tomorrow.
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Joined: 10/7/2019
Posts: 31
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Does you and your parents have early or late onset dementia, because early onset Alzheimer’s can have different(atypical) symptoms and vision decline is one of them.
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Joined: 12/15/2011
Posts: 18704
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As far as getting blown off, when I communicate with offices, if I have trouble, I let them know that I am a senior citizen, and if necessary, that I am a disabled senior citizen, and that I need extra help and attention. After that I have found the staff to be more patient and responsive.
I think you definitely should let the retinal specialist know that you have had a sudden visual decline. You need answers.
Iris
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Joined: 11/21/2015
Posts: 237
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I was given some more info from my PCP office but I can't tell if they are confusing cateracts with the ERM. They offered a doctor visit and since I'm not to the point of taking the surgerical risk, I am waiting to see if I have further decline. I panicked last week. The 50.00 office visit can be used for my january followup appointment. The new counselor just says the typical walk around the block, and eat better. But she doesn't know I'm sensitive to nuts and seeds and bored with spinach and cabbage. Just wastes my money when I really should be dealing with insecurity and accepting the aging process. I hate living alone, being without spouse or family.
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Joined: 12/15/2011
Posts: 18704
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Step, you said you had a decline in your vision. A sudden decline should be brought to the doctor's attention. Are you using an Amsler grid daily to check your vision? It might be useful for ERM monitoring. You might ask your doctor. Ask the doctor when is it important enough to alert him or her to changes.
Iris
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Joined: 12/15/2011
Posts: 18704
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Step, I too have no spouse and no natural children. My younger relatives live far from me and they are busy with their own lives anyway. Close friends have disappeared. Thus, I have learned to be confident in my ability to fulfill my own needs by seeking out resources now, while I can. This is what I am doing. It's extra difficult because I not only have to seek out the information and do the planning, I also have to carry out whatever decisions I make. I can't rely on people I know to meet my needs or to carry out my wishes.
Iris
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Joined: 11/21/2015
Posts: 237
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Thanks iris. I misplaced the paper grid and have been using the one online.
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Joined: 1/28/2013
Posts: 2659
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Have you ever undergone eye surgery? I have on several occasions, including cornea grafting under local anesthesia in the 1980s and cataract surgery recently. The more recent surgery was a walk in the park because of better sedation and surgical methods. There is really very little to fear, at least with ehat I have had done.
The vision and dementia side effects from estrogen are related to blood clotting. It depends on your personal reaction to hormones. HRT can either cause or prevent these outcomes. It is very frustrating that doctors will no longer prescribe HRT for everyone across the board these days because of the Womens Health Initiative study. My own mother declined precipitously when taken off lifelong HRT because of a total hysterectomy in her 30s. Many of these frightening side-effect warnings sre based off statistics that may not tell the whole story about an individual.
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Joined: 11/21/2015
Posts: 237
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I have never had eye surgery. I cannot tell when to decide on the surgery. I am starting to see the distortion but not as bad as most amsler example are showing. I have only recently stopped the estrogen. It was affecting both of my eyes. I do have fear of vision impairment. I am trying to purge things in plan of vision loss. I am not prepared to loose my vision. No family has stepped up to help me plan needs. I guess I will need to hire people. That will quickly deplete my savings.
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Joined: 12/15/2011
Posts: 18704
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Step, it's good to be prepared but you don't have definite bad news right now. Now that you are off the estrogen, see how your eyes respond. Prepare yourself for your appt in January. Have you had visual fields' testing?
Iris
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Joined: 11/21/2015
Posts: 237
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Hi iris. Thanks for being positive but now my vision is changing daily. I just havent figured out what medicine is causing it now. Generic Xanax definitely had negative impact. Avoiding that! Not sure about that field test. They sent home amsler grid. It really is just depressing all around. No family or friends offered to stay at my house. But I still ha e a couple more to connect. I guess it will be pricey to hire 24hr in home care. I hate to do that. My parent was a victim of theft. But what can I expect, we had the same dysfunctional family then too. Been that way since childhood. No wonder I could never have a functional relationship myself.
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Joined: 12/15/2011
Posts: 18704
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Step, have you reviewed your medications, both prescription and non-prescription, for visual side effects? You might ask your pharmacist to help you. Some pharmacies or hospitals will offer a "brown paper bag" visit for the public to bring in all of their medications for review. In my case, I had to stop taking Cymbalta for pain relief, even though it was very effective, because my vision was so affected I could not drive.
Don't change any medication without checking with the prescribing doctor.
The visual fields test is a way of thoroughly testing your vision under specific conditions. The Amsler grid is a screening test, letting you know of a need for further testing. I used to have my visual fields tested every six months when I was on a certain medication. I never had any changes noted.
Some family members seem to respond better if they have a specific task to do. You probably want your family to show more attention to you. But do you have a specific task for them to do now? For example, "please come with me to my eye appointment so I will have another person to hear what the doctor has to tell me." You might have a different task in mind.
Iris
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Joined: 11/21/2015
Posts: 237
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TThank you iris, good ideas. I have to get around those docs who think I read side effects and pick one to complain about. I have been sensitive to most medications. But maybe with this eye diagnosis they will understand.
IIt. May just be just my body coming off estrogen. I have new body aches too.
I don't think I have a family member available to go to my appointments. I already asked for care planning help and was ignored. The one person I used to have is busy with parent needs. The retina office refuses to give any info over the phone.
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