Hello all. I have decided to go through with eye enucleation surgery. I'm shooting for May 4. I feel pretty comfortable with my decision. I felt better leaving the doctor's office then I did going in.
They will attach the muscles of the enucleated eye to a spongy material called Medpore. We discussed coral implants, and the doctor said that they replaced it with Medpore, due to the issues people were having with the coral. Attaching the muscles to the Medpore will allow the prosthesis to track the good eye, to some extent. If I choose, at a later date (in 6-9 months) I can have another surgery which will allow the prosthesis to track the good eye even more. We will see about that.
I just did some research and it stated that immediately after surgery I may have difficulty opening my good eye, which will be like being completely blind temporarily. That frightens me. Has anyone ever experienced this?
Thanks all for dealing with me throughout all this!!!!!!!!!!!!! This is a biggy for me. My doctor tells me I will be back to work in 2 weeks. I am a Hair Designer by trade, and I feel a little nervous going back to work, in the beauty industry, with a patch. Would you let me cut your hair for the first time wearing a patch? I don't know.
All input is welcome.
Thanks,
Marie3
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Enucleation
- By marie3
- Posted April 19, 2009 at 9:37 pm · 25 replies
- In Medical treatments that worked for me
- Shared with the public
Explore topics in this discussion:
25 replies
- Oldest first
- Newest first
- By joyceg98
- Posted April 20, 2009 at 1:45 pm
- Report post
Wear something bright that makes a statement. When my husband had his eye enucleated in the 1960's I made him a madras plaid patch, which was trendy then.
As a joke I also made a mink patch, but it looked like a piece of turf so he only wore it once among friends.
Yes, I would let you cut my hair with an eyepatch! The only possible issue would be depth perception, but you've been dealing with monocular vision for a long time, right? So you already have that one licked. You vision has not changed, just the cosmetics. If anyone questions it, just tell them your vision hasn't changed, and see what they say to that.
Best wishes,
Joyce
- By joyceg98
- Posted April 20, 2009 at 1:45 pm
- Report post
"No problem, my vision is every bit as good as it was before the operation."
- By marie3
- Posted April 21, 2009 at 1:41 pm
- Report post
Joyce,
Thanks for your encouraging words. What a great idea to make a statement with the patch. Did you make them out of regular material (like cotton or something soft)? My girls at work told me to put some "BLING" on it. Did you use a specific type of elastic band to keep it on? Tell me more.
Was your husband's other eye swollen shut after the surgery?
Thanks,
Marie
- By joyceg98
- Posted April 21, 2009 at 3:14 pm
- Report post
Buy the ordinary patch from the drugstore, and add bling. That way you have the firm shape and the elastic. I covered it with cloth, and you can easily use a glue gun.
Have fun!
Joyce
- By kimgillespie
- Posted April 21, 2009 at 5:58 pm
- Report post
Marie, I had my left eye removed 12 years ago!!! As you can understand it was one of the hardest decisions I ever had to make. Initially I was blind in that eye for 3 years afte many, many, many attempts to scar tumor while preserving vision. VHL started for me at age 13 and I probably received about 100 laser treatments , repair of detached retina , scleral buckle, vitrectomy etc... I even thought I could have lived with the blindness until the eye died, changed color and shrunk. I had multiple retrobulbar injections to numb the nerve and get rid of the pain- if only for a day. Looking back, Having my eye enucleated was the best decision.!!!My eye was removed in 1997. They used hydroxyapetite and I have a peg to help with movement -now they use what you mentioned I know it's hard to belive but most people can't tell which eye is prosthetic. I live in the suburbs of chicago and know of an awesome ocularist!! I'd be happy to answer any questions you may have . Don't worry about wearing an eye patch to work I'm a nurse and no one seemed to be bothered by it-I was more selfconscious. Best wishes and good luck to you. I'll send some extra prayers your way. Kim Where do you live? Who is your Dr.? Does he deal much with VHL???? kim in Chicago
- By Jacki1
- Posted April 22, 2009 at 11:23 am
- Report post
Hi Marie & Kim,
I too went thru all those procedures on my eye; after years of treatment, I ended up with a "painful blind eye". (Dr's DX!). I finally went thru with it (1986)...I woke up feeling like I'd been punched in the eye!....but the pre surgery pain was GONE! I went in W, surgery TR, home on F, and back to work on M. Now, the procedure is even better, I'm sure. I also have a fantastic occularist...It looks better than my "good" eye:)
Take care....Jacki
- By pupa
- Posted April 22, 2009 at 6:59 pm
- Report post
Hi I pray that all your decisions are the best and keep you healthy and happy, and less stressed Yesterday I had a vitrectomy in my good eye the other eye I am blind in So now I am waiting to see and my vision will be 2200/20 So that is all the vision I will have I hope for the best
- By donnab
- Posted April 24, 2009 at 12:53 am
- Report post
Marie- I wish you the best of recovery from your surgery. I am really curious about what type of eye patches you'll do, please share them with us.
I asked my daughter her opinion and she thinks you should have a smiley face and a peace sign. (don't we all wish we could be 12 again?)
I think you'll look great with a blinged up eyepatch and I would definately not have an issue with someone cutting my hair that had an eyepatch.
Hugs,
Donna
- By marie3
- Posted April 24, 2009 at 2:05 am
- Report post
Kim, I live in Chicago. My doctor's are at Northwestern Memorial (all my VHL doctors). My ophthamologist is Dr. Lee Jampol and Dr. Alice Lyon. I have met other people with VHL while sitting in their waiting room. My enucleation doc is Dr. Gary Lisner. Dr. Lisner comes highly recommended. Who is your ocularist? I haven't met mine yet. My doctor has one that he works with.
I'm a little concerned with the period of time between surgery and permanent prosthesis. My 8 year old is a little nervous about seeing me after surgery.
I feel ok about the surgery otherwise. I still have a week and a half to go though. I keep telling myself "It will be ok. It will be ok. It will be ok."
BUT- If I hear another "pirate" comment, I'm going to scream. Let's get more original people!!!!!!!!! Right?
Donna, Tell your daughter she has excellent taste in eye patch decor. I like smiley faces and peace signs myself. Although, I'm a big fan of patent leather-purses, shoes, belts. Why not try a patent patch? I'll have to look around for something that resembles it (Joyce?).
Pupa, I will keep you in my thoughts. Be strong. Life can be very trying.
Jacki, I was told by many, that cosmetically, people will not be able to tell. These days my eye isn't always looking too well. When it's not red and tearing, it's half closed.
Thanks guys,
Marie
By the way, do you guys all wear glasses to protect the good eye? I always wear glasses. BUT I just ordered contact lenses for my good eye, so I don't have to wear a patch AND glasses. How much stuff can you wear on your face? Plus every once in a while I like to wear a contact lense instead of glasses--just to feel a little pretty.
- By kimgillespie
- Posted April 25, 2009 at 3:51 pm
- Report post
marie Ihad gary Lisner too!! My ocularist is June Nichols I highly recxommend her She is located in F]Des Plaines On oakton. All of my Doctors are at NWMH too I bet we could have seen each other in a waiting room!!! If you can please call me my good eye is having some major problems!!!!! I went to my retitinal Dr. yestereday and my vitreous gel is detahing from the center and my central vision is nearly gone-unless i use peripheral vision or move around. I'd love to talk to you as it is easier for me right now due to my recent vision change-just4 -5 days age My #is 847 918-1770 Thanks Don't worry you're in good hands!!! Kim
- By katmine
- Posted May 3, 2009 at 6:01 pm
- Report post
Marie,
I had my left eye removed in 1962, when I was seven. It's good to hear how far we've come in terms of medical advancements. I remember waking up from surgery not being able to see anything. I thought the doctor had taken out both of my eyes. I didn't realize they had wrapped bandages around my head covering both eyes. I still remember that. I don't ever remember seeing out of my left eye. I know that having my eye removed was the best thing that had happened to me up to that time. I didn't know the sky was blue because I was so light sensitive. If someone started taking pictures indoors, I'd run for cover.
Today, I have a few more wrinkles on the left side of my face than the right side and I became nearsided in my right eye so I wear glasses. Actually I like wearing glasses and they do protect that good eye.
I would let you cut my hair anytime. My massage therapist is totally blind and she is wonderful. I would have never thought of a smiley face, mink or peace sign patch. How cool is that!
You are in my prayers. I wish you all the best.
Kathy
- By donnab
- Posted May 4, 2009 at 2:21 pm
- Report post
Marie, Just praying that all goes smoothly for you today. Let us know how you're doing once you're up to it.
Hugs!
- By Jacki1
- Posted May 5, 2009 at 10:59 am
- Report post
When I had my eye removed, I was working at a fabric store...I had a "store-bought" patch that was black and quite boring. So I created several "designer" eye patches!! Different colors, plain and fancy!!! It was fun, and it lightened the conversation for others and myself. It also paved the way for VHL enlightenment! I don't know what they do now, but I also had an "off-the-rack" falsey until my socket was ready for a custom made prothesis.
Take care...
Jacki
- By marie3
- Posted May 9, 2009 at 4:20 pm
- Report post
Hi All!
Well, I had my surgery last Monday. I feel good. My doctor said that as bad as the front of the eye looked, the back of the eye was way worse. It definately needed to come out. Surprisingly, the pain level was not bad at all. I kept it under control with extra strength Tylenol-that's it. I threw away all my eye drops that I was using before and I'm looking forward to a pain free future.
Thanks guys!!!!!!!!!!!!!!!
Love,
Marie
- By marie3
- Posted May 9, 2009 at 6:48 pm
- Report post
P.S. I donated my eye to NIH. I feel like a trader to NDRI, but I have loyalties to Dr. Chew. Marie
- By TinaDiane
- Posted May 10, 2009 at 12:09 pm
- Report post
Hooray!!
I'm happy for you, that it is over. Here is to a new chapter in your life!!!
xoxo
Tina
- By joyceg98
- Posted May 10, 2009 at 7:51 pm
- Report post
So glad to hear the pain is gone!
No problem donating the eye to Dr. Chew! We just want our tissues to go for research, and Dr. Chew will certainly put it to good use. The bank at NDRI is intended to complement, not compete with, the collection at NIH.
All best wishes,
Joyce
- By marie3
- Posted June 10, 2009 at 10:40 am
- Report post
Hi All! I just wanted to let you know that I got my temporary prosthetic eye yesterday. No more patch. I look normal again!!!!!!! Even though it's just the temporary eye, it still looks good. I feel like a new person. I will be fitted for the permanent one in six weeks. What we take for granted in life.....it's so unreal. I just want to show my eyes to the world.
Talk to you soon,
Marie
- By donnab
- Posted June 12, 2009 at 11:07 pm
- Report post
Congrats Marie! I am so happy for you. *Hugs*
Add to the discussion