LETTERS FROM FRIENDS (page 2)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
Dear Jay,
Your web site is most useful. You are young and I am glad that you are doing so well.
My dad is 90. He lost his eye from a stroke and had it removed. He now has a ocular prosthesis which is like a disk that can be removed to clean, etc. Its an exact copy of the other eye and a stranger cannot tell it is false.
My question is:
DO you know how they clean the prosthesis? what do they use. This Dr that made it wants my dad to come in twice/year and spend $80 to clean it during a 5 minute visit. My dad cannot afford that. Would you know how best to clean it w/o damaging it??
There was a good medical site from Pennsylvania that described eye and eye removal problems but I don't have it 's web address, but it was a medical center for eyes that had a great deal of patient info that was useful prior to my dad's surgery. It told us more than the DRs.
Jay,
I have to thank you for all the information on your website.
A week before Christmas, I was diagnosed with a tumor. It was so big I had to have my right eye removed immediately. At 25, this has been quite an experience. The great thing about your website is that every fear and phobia you mentioned, I have had. Next month, I fly to Utah for a prosthetic, and the fact that I know what to expect is priceless.
Incidentally, I live in SoCal as well. Do you know A good oncologist in the area? I would like to find one who comes recommended.
Thank you so much for your website. I'm a 54 year old female that was diagnosed with melanoma in my left eye on Oct. 25, 2000. It was a whirlwind of tests, second opinions and before I could turn around good I was in the hospital 2 weeks later to have my eye removed. Like all of you, I was very afraid of having the wrong eye removed. My Dr. assured me that he intended to go all his career without doing that. He went thru all the steps that they would go thru. It was a tremendous help. Even though they had marked my eye to be removed with a dot-he came in and asked me which eye, he looked to make sure and then he took a big huge black marker and drew around my eye. That alone was reassuring. The difference for me has been-he wanted to wait for 8 weeks to make sure my eye had healed to get my prosthesis. My eye has a clear plastic shield where the prosthesis will fit. I've worn an eye shield over the outside of my eye while I have been waiting. Things were ok until this past week when it just became too prolonged. I replaced the shield with an eye patch. It is much better. I'll be getting my prosthesis on Feb. 9. That will be one proud day for me-like Christmas, birthday and all the holidays wrapped into one. Thanks so much to Jay for providing this website. I now know what to expect and am looking forward to it without any fear of the unknown. Its really good to know all of you have gone thru this before me. It gives me hope and lets me know there is a lot of life left to live. Thanks Frances
Hello,
I've had an artificial eye for over 20 years and am in need of a new one. I was hoping you'd tell me what your guy in Tustin charges for an eye. I live in rural northern CA and there is a service that does a "circuit" around this region, making eyes. They charge $2800 and I want to see if that's low, high, average or what. Any help/info you can share would be greatly appreciated.
Thanks
I like your site. I am a 57 year old male. One week ago I lost my left eye to squamous cell cancer on and around the eye. The procedure was called a complete exenteration. The eye was removed, along with all associated tissue, including muscles and lids, right down to the bone.
I am currently shopping for a eye patch. It will be months before the skin (and scar tissue) creeps in to cover the bone. Then, I can consider a prosthesis. Do you have any advise on patches? I can't get by with just dark glasses because my socket is open and must be protected from contamination.
My thought for the day:
"Any wuss can agree to donate his organs to cancer research after his death. A real man doesn't wait that long!"
Life is a gift from God. Good health is a bonus.
Hi
My name is Saeed and I am going to have my right eye removed next week (2001.feb.10). I have never thought that this could happen to me, and I am having big difficulty dealing with it. I found your website and it was such a tremendous help just before my surgery.
Thank you for having done a great job by sharing your experience and letting people doing the same thing. Your upbeat personality and the way of looking at this trauma has already helped me a lot. Thank you again for a great website.
Saeed
Hello!
At first, many thanks for your excellent website! I came around by searching for information about eye removal and artificial eyes.
Well, let me tell a bit about myself. I am a 19-year old female from Germany and I am about awaiting the removal of my left eye. It became necessary due to glaucoma and a corneal transplant surgery where have been several problems. During operation my eye started bleeding a lot and I lost more than half of eyeball volume. I have no medical knowledge, so I can't explain the exact reasons for that happening.
Now living with a blind eye, a clouded cornea and a shrinking eye, the doctor asked me to let the eye be removed because it makes more problems (and sometimes pain) than it is helpful. And, of course, it is very unsightly, people always look at me because of this.
So, after a period of thinking about it, I decided to let my doctor do the enucleation. Although the eye a damaged a lot, it was really a difficult decision I made. The operation is scheduled for the end of April.
Your website helped me a lot to get information and learning about other people's feelings. Additionally, I agree with you all, it is also my fear that they remove the wrong eye! But I know from the hospital (from my corneal transplant) that they ask you which eye should be operated to make sure that they mark the right eye and make no mistake.
My second concern is about how I will look like after surgery. But after I read you site, I concluded that it might be not as bad as I had imagined.
And the third thing is that I agree that nervousness before surgery is more present than after surgery. Well, there are several weeks left until then but I am starting about making thoughts about what I will go through.
Again, thank you a lot for providing the information. I think you will hear from me when I underwent the surgery, I will tell about my experiences.
Greetings,
Sandy
I just wanted to write to thank you for your very supportive web site. I lost my eye when I was 14. I was in a local park with a couple of my friends, when one of them pulled out a BB Gun. I was shot in the left eye. I was rushed to the hospital, where they proceeded to try to remove the BB, but to no avail. I was in the hospital for a week. Everyday they would check me to see if I had any vision at all. Finally at the end of the week they determined that I would never get any vision in my left eye. I then had to make the decision to remove the eye, or leave it alone. It was a tough decision, but finally my family and I decided that I should have it removed. This is what the ophthalmologists there had recommended. Two weeks later I was back in the hospital to have the eye removed.
That period in my life was so hard. I was so scared of what I was going to look like with a prosthesis. I thought everyone would know by just looking at me. I was just a freshman in high school. I though no boy would ever want to date me. I went through a rough time. When I was finally fitted for my prosthesis, I could not believe how great and natural it looked. My ocularist, Kevin Kelly, did such an awesome job. No one could even tell! I was so happy.
Today, I am a 22 year old woman. I work full-time, and go to school part-time. I am the mother of a 2 year old son, and I am planning my wedding for September of 2002. Obviously this terrible incident has not slowed me down at all and I found the greatest man ever who wants to marry me, glass eye and all.
Of course everything is not always fine and dandy. I still come across those young children who look at me and say "What's wrong with your eye?", but don't we all! I am just grateful that I have my right eye, with perfect vision I might add! I would really like to talk to people who have gone through the same type of experience. So if anyone is interested in writing, please do.
Thanks again for this resourceful website!
Jill
I lost more than just the globe....so, the prostheses your website describes don't apply to me... My cancer was in the eye socket and I had to have the entire eye socket contents removed...I'm left with a cavity.. Is my only alternative to wear a patch over it?
I also was diagnosed with the same condition (only big tumor) two years ago and am very happy to see this website. The loss of an eye is better than the alternative. I have found it does pose unique challenges in activities where depth perception is an issue. I refuse to accept that I can't do something I did before, although my lack of acuity has had an effect on my performance for things like tennis where something comes toward you. When I was enucleated my physician gave me Frank Brady's book which helped to prepare me for some things. I believe something good can come from even the worst situations and greatly appreciate being alive today, now and for as long as I am blessed to be in this world.
Great Site!
It’s all fun and games until someone loses an eye!
I have a T shirt that has the Latin in big letters and the English is small letters.
I had my eye removed on January 19,1999 due to melanoma. At that time, I did not think I would live to see the millennium. I just went to get glasses (40 y.oa.) and thought I couldn't see well. The next thing I knew, they were removing my eye and telling me my chances of survival were poor. Being a single parent with an 8 year old, I was devastated....
Now two years later I guess my prognosis is still poor. After about six months of very serious depression, I made a decision to "live" for as long as I am blessed to be here. Most of the time, my life is very normal now. Every day though, I really don't have an eye and always have a Cat scan "shake" in my refrigerator.
I found the letters very comforting. It's nice to know you're not the only one out there!
Jay,
This is a wonderful site and resource for someone going through the experience of losing and eye. Like you, I am a very active 35 year-old man that had never heard of "eye cancer" before. I was actually riding my bicycle about a month ago, which I put a few thousand miles a year on, and noticed some floating vision in my right eye. The next day I noticed it more while I was riding again and contacted an Ophthalmologist the next day. He saw me a day later and saw the melanoma right away. He said I was lucky to have caught it because I had actually torn my retina, which was actually what brought me in to see him. The tumor was totally unrelated to my symptoms but wouldn't have been found otherwise.
I came back the next day to see his partner who was also a retina specialist. He confirmed the finding and made me an appointment at Wills Eye Hospital in Philadelphia a few days later. I used that time to do a little investigating. Fortunately I live in the Philadelphia area and I recruit physicians for a living so I know some reputable people to contact about where I was going and who I was seeing. I was happy to find that there really isn't anyone better to go in the country, possibly the world, for my treatment than where I was going.
I was somehow under the impression that my melanoma was small, possibly by the fact that my Ophthalmologist kept telling me not to worry and that I was going to be fine. I had learned from the eye cancer network website that for a small melanoma they typically radiate it and shrink the tumor, not a major ordeal. I was wrong. Carol Shields, MD and her team found the tumor to be 12.8mm, what they would classify as large, since it was basically half of my eye. The best form of treatment was enucleation. I agree with you, this is a terrible word. From the information I had gathered, if these people were telling me this was my best course of action, I was listening. I don't mind telling you that I am a former Marine and have seen some crazy things, this brought a tear to my eye, the one I was going to lose.
Later that week I had my surgery and it went pretty smoothly. You know, I guess I was a little preoccupied mentally, because I never really thought much about the possibility that they may remove the wrong eye by mistake. Maybe it was because at least six or eight people through the pre-op process asked me which eye would be removed. I had the operation on Thursday afternoon, February 15th, 2001 and went home the next morning. Fortunately its only and hour drive. I had dull pain in my right eye until about Monday. It was mostly caused when I would look at something with my good eye and my right would try to follow. Later that week I took a couple of short drives around the neighborhood in my car and a little more than a week after my surgery I was riding my bike again.
Its been a month since my enucleation and my life has started to go back to normal. I have been back to work for over two weeks (the first week from home) and have been riding my bike at least every other day for an hour or two. I tried riding my mountain bike on some relatively easy, wooded trails and had some difficulty with rocks and roots. That will take some getting used to again but I am confident I will be able to do it. I am looking forward to doing some racing again this summer and fall.
In the last six weeks I have had a couple of those "why me?" days. I already wear corrective lenses (used to wear contact lenses) so I had routine eye exams annually and just had one four months before my diagnosis. I wondered that if it had been picked up then would I have lost my eye? I didn't dwell on it long because it wasn't going to make the cancer go away or bring my eye back.
I have kept a positive attitude and have had wonderful, wonderful support from family, friends and colleagues. I don not see this as any kind of handicap and will be offended if others think I am. I am usually a pretty positive person anyway and I think that has helped. So far the biggest difference I see is some lost peripheral vision on my right side. That just means that my wife can sneak up on me more easily so I guess I will have to learn to turn my head more. I have missed a step on the stairs in my home a couple of times and have nearly banged my head on open cabinet doors. I am learning.
Your section on visiting the Ocularist will be helpful because I do that in a couple of weeks. I have been a little anxious about it and your experience puts it in a good perspective. I am actually really excited about it because I want to get back on with things. Getting rid of they eye patch will help me feel better about myself. It makes me think about one of my favorite movie quotes. If you've ever seen The Shawshank Redemption, Morgan Freeman's character tells us to either "get busy living or get busy dying". I prefer the former and have adopted that philosophy.
Your site is a great reference for people who have gone through this ordeal or are about to. I will be sure to recommend it to Dr. Shields when I see her again in a couple of weeks.
Sincerely,
David
