LETTERS FROM FRIENDS (page 5)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
I was told on Oct. 18th 2001 that I had and ocular tumor. It started out as a routine check up, they noticed what they thought was just a retinal tear. Which was bad enough. They immediately sent me to a specialist here in Clarksville Tn. He in turn sent me to Nashville Tn. to a retinal specialist. I was diagnosed with choroidal tumor. Cancer. A tumor measuring 8.9. This all within hours. The only signs were circling bright light. Then 2 weeks ago I felt like my eyes were strained. I had a few headaches, but my job can be stressful.
This doctor was very straight to the point, no emotions as he said what he found. My husband and my emotions did a temporary shut down. Then to be told I needed to get the "Hot Spots" checked immediately was total shock. I was set up for a second opinion with one of his collages on the following week on the 23rd. We met Dr. Trent Wallace and this extremely gentle and caring doctor eased into what was to come. I was lucky to have him examining me that day. I was let know in a caring way that the only chance of keeping this from spreading was the removal of my left eye. I've just turned 41, have a loving husband, 2 beautiful daughters ages 22 and 10, and one angel of a granddaughter who is 4. I also chose to just take it. So as of tonight at 10:00 I go to the eye surgeon tomorrow the 24th, and it's planned for surgery to be the following day.
Of course I'm nervous, but knowing life is still out there after the eye. Thank you for this site. My mind is so much more at ease and my fear not so intense. My husband found this site one night is our search for information.
Again my thanks.
Tammy
I wrote to you about a week ago. I had just found out I had choroidal melanoma. The surgery was done on Oct.25th 2001. I went home the same day. Also like one of the others who have written in had blood work done and chest x-rays done. Both came back negative. But thanks to one of the people who wrote in about having CT scan done, my husband ask my surgeon Dr. Deborah D. Sherman, out of Nashville Tn. about having a PET scan. She felt it was a great idea as blood test do not show up as quickly. I had it done on the 31st of Oct. and sure enough it showed 2 small spots on my liver. I go for the CT scan on Nov.5th.I just hope it was caught in time for maybe just some radiation or something on that line that will zap it before it goes to far. So anyone out there that has been for blood test , get the other done.
Thanks for your site.
Tammy
I have written twice before, but I wanted to put an update on the scans I had done. A week after my left eye was removed, I had a PET scan done. It shown 2 small spots on my liver.
A CT scan was ordered a week later which, luckily and by the grace of God, it showed nothing. I couldn't understand why the PET scan showed something but the CT showed nothing. At the time we were told I just assumed the 2 spots were cancer. But when I ask my surgeons assistant, which she is an excellent and caring person, as is my surgeon, reminded me that they never said cancer only that there was something that shown. I was so relieved. I go back in 6 months for another CT scan. I go next week to see if I've healed enough for the "fake" eye.
I want to thank you for setting up this site. If it wasn't for this site we wouldn't have known to ask for a PET scan. And if those spots had of shown up on the CT scan, at least there could have been something done early. Which can mean the difference between life and death. Blood test do not always show up early enough. So no one should go by blood test alone. You can take it a step further. You must take it further.
I now have a chance to spend more time with my daughters, my granddaughter, my husband, and my family. Being afraid you are going to possibly die and not get to see your youngest daughter and granddaughter grow up was almost unbearable. I owe my life to the O.D.,Dr. Bill Bosley of Clarksville, TN. Even my surgeon said it was unusual for an O.D. to find this. Guess who's my eye doctor for life?
Thank you again for this site. I will be logging on to this site every so often to see any updates.
Tammy
To whom this may concern,
I was born with glaucoma. I had a lot of problems with my eye pressure when I was growing .Then at age 25 I had to make the biggest decision in my life. It was a hard one to make. I was told if I did not have my eye removed it would exploded because of the pressure in my eye was uncontrollable .I was very frightened by them words. I did not know what to expect or how I would feel. I'm now 41and I still have problems dealing with my artificial eye. I was wondering if there were any support group out there.
Thank you
Brenda
I just wanted to write and thank you for your web site. I'm having my left eye removed this Friday and I have been blind in this eye for about 8 years. So the part about seeing with one eye is fine. I'm just a little freaked out about the surgery.
After reading your info I feel much better. I'm usually an extremely upbeat person and am still that way-I guess the whole enucleation thing is just nerve racking.
I'm sure everything will be just fine but it really helps to have a first hand account (such as yours) about the actual surgery-thanks!!
At 33 years old I never thought I'd be losing an eyeball but you are right in that life does remain pretty much the same only seeing with one eye. I guess I am thankful I do have one eye with close to perfect vision.
Well I just wanted to tell you how much I appreciate the web site!
Julie
Well--it's done and I am back to work and feeling pretty good. I just get headaches if I read too long at one time. ( I love to read). My surgeon sutured my eyelids shut for 2 weeks in order to prevent the implant from falling out. I guess this happens quite a bit!?!
I look like I've been in a fight and I've joked around with some people about what happened to me. Some people can't understand how I can joke but my philosophy is--
LIGHTEN UP!!
I appreciated reading on your web site how sore moving my seeing eye would make my eye socket. No one (doctors, nurses) told me about this and this has been one of the hardest things about recovering. The muscles in my socket get really sore.
Next week I get the stitches out and a temporary eye so I can't wait for that!
Thanks again for your very useful website!
Of course I wish I never had to deal with this but it's kind of exciting and things could really be a lot worse! We (people) need to look at the positive side of situations instead of dwell in the negative! Luckily this comes easy to me!
Take care!
Julie
Hey Jay
I have my temporary eye and it's pretty cool! It doesn't fit that well though so it "slips" out sometimes if I mess with my lids. Last night I had my work party and as I was driving there it fell out in my car and I couldn't find it!! oops! I finally did and just popped it back in! I thought it would be freakier looking at the inside of my socket but it is NO big deal. I am very relieved! Now that you have or have had your regular eye does it ever fall out? I'm a little paranoid about being certain places and having that happen.
Julie
Julie,
It did for awhile -- and it really bugged me -- but I went back to my ocularist for a re-fitting, and he "built up" the prosthesis by adding some clear plastic around the edges.
As your muscles in your socket go unused, they'll shrink. This will continue for about 6 months after your eye is removed, and then they'll stabilize. That's when you need to have the prosthesis re-fitted.
But even now it shouldn't come out very easily.
-- Jay
Jay-
I was just wondering how people have reacted to what you have been through?
My closest friends have been really supportive as well as my family but some co-workers and people I have come in contact with have been really grossed out by the whole thing.
I have an 8 yr old son who I was most concerned with and he has been really great about the whole process!! Thanks to the internet we were much more prepared.
Do you tell people that you have a prosthetic eye ever? Can people tell? Right now I feel great but also feel like everyone can tell when they look at me which I have to get over! I hope you don't mind that I e-mail---I just don't know anyone who has ever been through this and it's very helpful to get input from someone who knows. Although most people are supportive and positive I feel like no one can relate.
Julie
