Macular Degeneration Surgery Scheduled - am struggling

[mgshutterbug]

I know that this is off-topic, but I am struggling to keep on even keel, to say I am overwhelmed is an understatement. I have beginning macular degeneration in my R eye, my "good" eye, as far as DES goes. I have EBMD, MGD in that eye, but up to this point have only had abrasions, not erosions in that eye. It is very dry, but doesn't come close to the surgically caused dry eye in my L eye. My left is very painful, has had RCEs, but thankfully has not had any for 6 mos. I'm severely photophobic in that eye because of the EBMD, which is worse in that eye than in R eye. Anyhow, now that I have a macular hole in the R eye, and a "puckered membrane", I must have surgery on the 18th of this month. The puckered membrane is what sometimes happens when the vitreous (gel-like substance in the bulk of eye) begins to congeal as we get older, and it doesn't cleanly pull away from the membrane which encloses it. I have a small area of membrane next to the macular hole, which is "stuck' to the macula, causing further central vision loss and distortion. If the membrane which is adhering to the macula suddenly pulls free, it can take a chunk of the macula with it, causing further vision loss. So, I need to have this surgery to prevent this, and the hole enlarging causing greater vision loss. The surgery will detach the membrane gently after a large amount of the vitreus is suctioned out, and this should also enable the hole to close. My vision may improve modestly, or considerably, or possibly not at all. I'm rooting for the "considerably" outcome!

Anyhow, I'll need to lay face down for 55 minutes of every hour, for a week, so the bubble of gas which the surgeon inserts will continue to press the retina in place, preventing it from detaching. The 5 minutes of every hour that I can get up - I must be careful to not make any sudden movements, and must still keep my head parallel to the floor. I will only be able to see light and shadows in that eye for over a week, possibly 2 weeks. Acuity will slowly develop over the next 3+ months as everything slowly heals. Much damage occurs to the cornea during this surgery, so I've been told to expect RCEs in this eye, severe photophobia, and severe dry eye lasting at least 6 mos.

I'm terrified, in a word. I've had many medical problems which are severe arise in the last 4 years, 3 major surgeries, and am now facing a 4th one. Has anyone here had surgery for macular degeneration or retinal detachment? I don't expect that any/many have had that experience, but if you have, I would love to talk with you.

I plain old just need some support. I'm scared. And I need prayers.

I'm very grateful for this website, for the people who come here and support each other, provide experience and information. And I am so grateful for all that Rebecca has done, and continues to do. I would not be making it w/o all the support I get from this website.

Will keep you posted on my progress.

[Lacey1]

It's amazing, I had never heard of this procedure until a couple of months ago when one of my coworkers had to have it and now you would be the second person I've heard of. The lady I know is the manager of the lab I worked in. She was back to work a week after it was done (the first week, she had to stay face down and couldn't exactly work). She too has dry eyes and she said having to keep her face down for a week was very difficult. The last that I talked to her, her vision was slowly improving. It's a scary process and I will pray for skilled doctors and a quick recovering. Good Luck!

[mgshutterbug]

Lacy, thanks for your reply and support, as well as for the positive experience you reported of your co-worker. I have been told I cannot return to work for 2 week minimum, am to do no lifting during that time. I am an Occupational Therapist and lift patients on a daily basis. I am fearful that even after the 2 week period, I could cause damage by heavy lifting. I will have to clarify this with my surgeon. Thanks again for your kind reply. Maria

[markdav]

I admire your bravery Maria, God help you!

[Rebecca Petris]

(((((Maria)))))

This is not off topic in the least... after all it has major implications for your ocular surfaces for quite some time to come. I think a lot of people here have undergone surgeries or hospitalizations - eye related or otherwise - which either worsened or made it more difficult to manage dry eye so hopefully some can share their experiences and tips.

You have gone through a great deal and I just want to reiterate how sorry I am that this new trouble has been added to it. I'll be praying for a quick recovery that surprises you by being less difficult than expected, and for that "considerably" improved vision! If anyone has relevant experiences or thoughts or just a kind word do pitch in here. I think people used to be able to recover from this surgery in the hospital but that is no longer the case and Maria will be facing huge practical challenges in that week or more after surgery that she has to be flat on her face almost all the time.

[littlemermaid]

Maria,

We send you our warmest love from London and will be thinking of you every morning and evening, looking for your news on the forum. I'm so glad that you like your surgeon and he is so kind - I was wondering if you felt you had enough advice and info from him on maintaining your eye surface during the recovery or whether you were contacting the surface specialist he was talking about before the procedure?

I'm wondering, if you have a massage table, whether you would have access to a computer, like a laptop, during recovery to talk to us, listen to radio, even watch tv? or whether you will keep your eyes closed as much as possible?

How wonderful that there is such an amazing treatment for MD and we hope for your comfort and good recovery.

[magoo]

My sister in law had surgery for a 'hole in the macula' a couple months ago. I was amazed at how fast she was able to return to work and normal life. Best wishes to you and hope your surgery goes as well as hers did!

There are lots of things - tables, chairs, beds, that can be rented that are made just for the period when you must keep your head facing down

[mgshutterbug]

Markdav, Rebecca, littlemermaid, magoo,
I want to thank all of you for your support - I appreciate it so much. You all here understand what's going on in ways that others, do not. When I tried to share with my daughter (31) how anxious I am, she said "you've had lots of surgeries, can't see why you're anxious. And I don't know what you're having it done for anyway. From what I read, macular degeneration just gets worse and there's nothing you can do." I attempted to explain very very briefly why the surgery needed to be done, that it was not something I really have a choice to do or not do. Her remarks were hurtful, frustrating, and made me mad. So to have all of you being supportive is truly a Godsend for me. I live alone, and the thought of going through this with very intermittent visits (once/day) of friends/neighbors is unnerving, to say the least. So having the emotional support of all of you means so much more than I can really express. Thank you for keeping me in your thoughts and prayers, and offering suggestions. Littlemermaid, re: maintaining the ocular surface and the cornea during recovery: he said I may have bandage lenses depending on how the surgery and recovery goes. I will only have an eye patch the first day. He is very astute, and I have no doubt he will send me to another corneal specialist at Wilmer whom he has already mentioned to me, should the need arise. He is well aware of how severe my DES is, the EBMD, MGD, etc. So though I am very scared, I do feel I am in good hands. I am intending to ask for more info when I go for my pre-ops, will stop in the retina dept. to get more info. If they don't have anything printed up to give, I'll just give my surgeon another call. He has been incredibly giving of his time, very willing to answer all my questions, even on the phone when I called him last week with questions. He did not rush me at all, gave thorough explanations. He said to call again if I had any more questions. As to keeping in touch w/you all after the surgery - I don't have a laptop, but I think I could get one of my friends to write something brief on the forum to keep you updated. If I can borrow a laptop, so much the better. And I'm keeping my phone handy. So if you have the inclination and the time to chat a bit, PM me, and I can share my telephone #. Thank you all so much. Can't tell you how ecstatic I am to have found you all!