LETTERS FROM FRIENDS (page 4)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
To Whom it May Concern,
I have recently come across your website and I have to say it's amazing! I lost the vision in my right eye 3 years ago, and I would say I'm pretty much adjusted to it. But I have some questions:
1) Do you know if the driving laws in Canada are the same as the U.S.?
2) Do you know of any support groups in Canada (Toronto area)?
3) What are some good websites to keep up on eye research?
The last question is important to me because I was in an accident which resulted in getting metal in my eye. They managed to save my eye and reattach the retina but I cannot see because I have scare tissue in my eye. I have in effect a blind spot in the middle of my eye. My lens was torn apart so they never put a lens in there, but they said they could if I could develop usable vision. The good thing is that I have peripheral vision still.
Thanks,
Mike
P.S. I heard that David Ducuvney (of the X-files) was in a basketball accident in college witch resulted in the loss of vision in his right eye, another success story.
Your Web site was linked to the Midwest Eye Institute, which is where my husband was fitted with a prosthesis this spring. His story is a little different from yours in that he had to have all tissue removed from his left orbital area. (see my Web site www.command-centre.com/healing for details) His prosthesis is much different than yours - it is about the size of a large marble, has a sort of clear plastic "cap" sticking out of it, on which his upper eyelid sits, and is removed each night. He doesn't look totally "normal" with it, but it sure does beat having to deal with a large hole in his head! The purpose of my e-mail is two-fold: First, thank you for your site and the information it contains. Your site is a valuable resource for those who have lost an eye. Second, please feel free to use my site as a resource for others who might contact you about a condition similar to my husband's. We are especially interested in informing those who are facing the loss of not only the eye, but also all tissue in the orbital area, that there is a surgical option they need to know about. Mayo Clinic performs a procedure that only a handful of other institutions in the world do - that of saving the eyelids and inserting a muscle flap to enable a prosthesis to be used. Thanks for a great site!
Bev
I'm a 51 year old white male who was dx with lacrimal gland cancer on June 5,2001.
I worked in a hospital for 26 yrs , as director of cardiopulmonary and a physician's assit. I now work selling Medicare and long term care insurance. I was scared and so was my family. But with a positive mental attitude that I Have had all my life and having a great wife and son, I made it through the 6 + hours of surgery. I did start driving on June the 19, 2001. and your web site really has helped me a lot. We ride horses a lot in Wyoming and I'm just waiting to get the ok from my doctors. Will e- mail you back as I go though this.
Jay, I corresponded with you a few months ago. Like you, I am a very active 35 year-old professional that had no symptoms and bam, I'm losing my right eye because I have a 12.8mm choroidal melanoma. A couple of months after my enucleation (which I have adjusted to just fine) I followed up with an oncologist my surgeon recommended here in the Philadelphia area. He had me go through a series to tests and CT and MRI scans (which all took a few weeks) and I found out that it has metastasized to my liver. In a big way too, about 40%. I started an immunoembolization treatment process last Friday at Jefferson University Hospital. I tell you all of this because my chest x-rays and blood work is still all normal. If I continued to rely on those I still would not be diagnosed and I would probably only have months left. I don't know what your follow up has been or the people you speak to through this site, but I think everyone who finds out they have choroidal melanoma should start immediately having semiannual CT and MRI scans of their liver. Just some suggestions. David
I found the stories on your website inspirational . as it was three years ago , my husband was mowing with a brush-hog , I realized that an extension cord had been left out, I ran outside, and as I bent over something hit me in the head and knocked me over. that something turned out to be a 2or3 lb. piece of steel off of the machine itself. it was a direct blow to my right eye and the skull around it. I begged the doctor to leave my eye and try to repair it and he did. but, in a few weeks he realized as did I ,that the damaged eye would have to come out and I would be getting the ever-dreaded "fake-eye" I can remember wishing that I would have just died from the head injury. isn't that sad? I suppose that I felt that way because losing a part of my body was overwhelming, especially my best and most expressive feature. I had a very skilled and understanding physician, and a gifted ocularist who I believe was a blessing. and my friends and family were and continue to be very supportive. the biggest problem that I have encountered are the flashbacks about the accident itself. and having no depth perception is a pain in the neck or sometimes the fingers as I am a nurse and have had a close call with more than a couple of needles. I can't count the times that I have ran into my own mailbox{it's easier to walk} or the local sonic drive-ins {there are four in the area and I’ve nailed all of them at least once.} not to mention all of the curb-checks, and the brief trips into the “other-people's lane." nope, don't exactly have people waiting in line for rides! {I am actually very careful & slow} the continual uphill battle for me, seems to be not wanting to avert my eyes when someone looks me in the eye as I am not secure enough to know if they are looking into my eyes or at my eye.
Hi,
My name is Spiros and I am 33 and lost my left eye when I was fifteen. Now that I am getting older I am really concerned about losing my other eye. I also have floaters in my right eye. The Doctors tell me this is normal and I am healthy but I have this underling fear something may happen. I visit the Doctors every 12 months without fail.
I have never received any support or counseling regarding my lost eye and it is now really affecting me.
Have you researched:- -Nutrients for eye
-Preventative stuff etc.
-mediations or vitamins not to take
-etc
Spiros
Hello Jay, I was so pleased to find your site. About 6 years ago I was diagnosed w/ interocular melanoma, went through the plaque treatment, held my breath for the next 5 1/2 years and then was told the eye must be removed. So 2 weeks ago it was done. I am a busy Mother and work full time so I am not being very patient. As I said I was pleased to find your site and enjoyed your candor on this not so bad process. I have received more pity from family, than strangers. I am so anxious to get my new eye because I am more uncomfortable with my looks than before, and I start back to work in a few weeks. I have considered a patch but feel it would be more a nuisance than not, for my position, will see. Ha. Also glad to see you have the ECN on your links, a blessed group I have found. Finding your site reminded me to be a bit more patient and to pursue all my dreams as soon as want. Also, when I realized the fact that the eye would be enucleated I decided I wanted a custom designed eye that was a exclamation point in the pupil, because that’s the emotion I thought was appropriate and never wanted anyone to wonder which eye it was. Keep safe & well. Lisa.
Dear Jay : My son, now almost 16 years old, lost his vision when he was 14 due to a BB through the right eye. He just received his learner's permit and seems to be doing well driving, and is really rather calm about the whole thing. I have been sitting in the right passenger seat verbally instructing him and wildly waving my arms around to indicate which direction he should go. While I was driving today I closed my right eye and noticed that I could not see anything going on in the passenger seat......and realized that therefore my son could also not see any of my frantic motions- which explains his calm confidence while driving. So, there you have it, one more one-eyed advantage! I am going to tell him about this web site and I hope he accesses it at some time, you have a lot of useful, encouraging information there. He has a sceral shell but refuses to wear it because he says it is painful. We have been back to the ocularist about 4 times but he still says it hurts. He still has his natural eye but it is smaller than the other eye and pretty unsightly at this point. Do you have any advice re this??? Thanks for a great site- Joyce
Hi
I'm a 25 year old Aussie and 4 months ago I had my right eye removed due to a childhood injury which resulted in long term acute glaucoma eventually causing my right eye to become a painful blind eye. I'm still struggling to come to terms with this loss and am still very self-conscious about the appearance of my prosthetic (which probably looks fine to others). If anyone has any advice, or any inspirational thoughts to help me through this it would be greatly appreciated.
Belinda
I lost my eye to cancer three weeks ago. I had it done in another City Vancouver BC Canada and I am from Edmonton thus I do not have ready access to my surgeon. I have a few questions. According to your report your eye stayed closed. Mine opened about two weeks later and now it stays open unless I consciously try to keep it closed. Is this normal. I wake up in the morning and I have to clean it. There seems to be a lot of goo. It is very swollen in the corner. I think I had a stitch but I don't know. It also seems a little sunken. I found some patches that fit on my glasses (I can't see without them, it happened to my good eye of course). My patch is hot pink and I have had some fun with it. If I had to wear a patch I might as well be right out there not pirate look for me. However just this weekend I have had some anxiety attacks. I do not have a partner and my grown daughter stayed with me for the first two weeks. I now feel so scared. I can't stand living alone and I fear no one would ever want me. I have always been a strong women with a positive outlook on life and now I feel so needy. Does this pass and do you ever get over the loss of your eye. Do you worry about the cancer reoccurring. I heard that in 50% of these cases that cancer reoccurs within five years. These are not great odds. Do you experience these fears? I know I have a lot of questions but I really have no one to turn to as this is such a rare think to happen (6 in 1 million I am told - Why couldn't it have been the lottery???) I look forward to hearing from you.
Take Care Vicki
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Hi Jay - Thank you for your words of support. I have been doing some meditations and positive thinking exercises and I feel better. I also contacted the Cancer Clinic and have arranged for some counseling. My is malignant melanoma and was contained in the eye. I don't know if that is the same as choroidal melanoma. I am also trying to take better care of myself i.e. better diet and exercise.
Does it hurt to have the new eye fitted? Does it take a while to get use to it? When I first arrived home I managed to trip a few times but I learned to take things a little slower. I simply couldn't see things on the lower right side but other than that I haven't had too much trouble with depth perception. Pouring things from a jug into a glass can sometimes be an experience. I have decided to move in with a roommate for awhile as I find I do not like being alone. Thank you for you support. I feel this happened to me as a wakeup call and I hope that I can help others in the future who go through this. I have been told by others that their life changed after this and they all said for the better so I find that very encouraging.
Take Care Vicki
hi!
I’m a 17 year old girl from India. I had my right eye removed 6 years ago (i.e., when I was 11).and in place of the removed one, the doctors fixed a glass eye, which was already made. now this glass eye doesn't match with the size of my eye socket. since then I’ve had this glass eye and haven't changed it even once.
I was really glad and happy to know that there were better alternatives for me like the bio eye from your website. I couldn't speak to anyone about this, and now after reading your website, its like an answer to my prayer.
now what I wanted to know was if there were any hospitals in India where I could get the BIO EYE. I am desperately in need of it. and I would be really thankful to you if you could email me the hospitals in India where I could get the bio eye, and also the cost of it.
thanking you,
Swathi.
I got your address from the patient to patient part of eyecancer.com
My name is Joe and I'm a 35 year old male. I was diagnosed with choroidal melanoma (medium sized) last week and I'm simply overwhelmed with the work to be done researching how to go about getting better. I have a medium sized tumor in my left eye and I can't decide if I'm going to go for the radiation treatment or not.
I was hoping to hear about your experience and to see if you've tried any naturopathic therapies or any other alternatives. When I was diagnosed in the hospital, the only choices offered to me were radiation (in the form of a plaque) or removal of the eye. I am hoping to hear from other who have successfully tried conventional therapy and other things - holistic, naturopathic, ayurvedic, etc.
Much thanks in advance.
Joe
First of all, your first few pages were very helpful. One of the most fearful things to me was thinking that I was walking around with a hole in my head for 6 - 8 weeks. When I read about the gel, it was a bit bothersome (actually very), but I guess I will get over my squeamishness 'cause ya gotta do what ya gotta do.
My surgery is this Thursday, and I leave Wednesday for Philadelphia. I don't want to deal with the plastic insert and would prefer a patch. As I was loosing my vision I would periodically use a drugstore "pirate" patch which I am not only used to, but it's easy to get a clean and fresh one immediately. I noticed they were not mentioned by you, and wonder if they are a problem.
Thank you in advance for your quick response.
Sincerely,
Judith
Jay,
Thirteen years ago, I was diagnosed with choroidal melanoma. I opted for the radiation treatment. The radiation did it's job and did little to destroy what vision the tumor had left me. The residual vision can, in certain light conditions, cause severe double vision, requiring that I immediately close the "bad" eye. At other times, I hardly notice the problem. I have a depth perception loss, but perhaps my work is more demanding of that feature of sight. I'm an electronics engineering specialist and work with surface mount, very tiny parts. While doing chores around the yard the loss is not apparent.
I have decided to look for a totally light occlusive patch and found your site. Any help would be greatly appreciated.
Ray
Jay, I wanted to let you know your web site has been very helpful. I am going in for surgery on the 16th of Oct. for removal of my left eye due to Choroidal Melanoma. I have spent much time on your site and have been very much encouraged by yours and other's comments. I am a pilot and will have a lot of work in front of me to return to flying status. I have been in touch with the FAA and was also encouraged to find that all other major airlines have pilots with one eye. I opted for removal because the cancer is very close to the optic nerve and radiation would destroy my vision within a few months. So the best chance for stopping the cancer is to get rid of the eye. All this probably sounds very familiar to you, but it has been a real learning curve for my wife and me in the last 3 weeks. Thanks once again for your work and site, it was and is greatly appreciated. I will keep you posted on my progress.
Tom
Thank you for your web site. My 18 year old son was hit in the eye with a paint ball in July 2000. He had been accepted into the Navy however that was not to be. He has gone through 6 surgical procedures trying to save his eye, but unfortunately this has not worked and his eye has gotten significantly smaller. Next week on Oct. 24th. he will have his eye removed. This is something he wanted and said no more surgeries. Your web site has given me some insightful information and reassurance. The letters of the younger people has been encouraging. Justin has had the time to adjust to vision in one eye so that is one thing he won't have to adjust to. Now it will be time for him to think about a plan for life since his life has been on hold for over a year. As a parent it is so hard to see your child go through things like this but I know it has made us stronger and God has been with us through all of it. Thank you again for your web site.
Bobbi
