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Younger-Onset AD or Other Dementia
Vision decline, vitrectomy given as option
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
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.*
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.
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?
Did you have an OCT?
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.
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.
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
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.
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."
Did the physician actually recommend the surgery or are you anticipating the worse?
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.
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.
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.
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.
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.
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.
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?
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.
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.