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Ocular tumors

marie3
0 Recommendations

Hello Group,

I'm sure you all know me by my eye issues. My very ill eye has been quiet for almost a year. Let me give you little refresher.

I have an ocular tumor that was discovered about 7 years ago. Been through through a series of Lucentis injections at NIH. Treatment was unsuccessful. Last year I received Proton Beam radiation at Mass General Hospital. Treatment gradually decreased the tumor but left me with neovascular glaucoma and an eye pressure of currently 56-58. At one point the eye became VERY VERY VERY painful. But then the eye calmed down-with daily eye drops. I even went to a doc that practiced Chinese Medicine. He gave me pills to take which were supposed to decrease eye pressure and restore some vision. I took these pills for months and started to see flashes of light-which is an improvement to my completely blind eye. Well, just this past friday, WHAM, the eye became VERY VERY VERY painful again. Another horrible experience. Eye pain so severe that your just want to die. If the pain itself doesn't make you vomit, be sure the painkillers will.

So, now I realize that this pain can occur at any time. The eye could stay quiet for a month, a year, even two, then WHAM the pain hits. It knocks you on your butt for a couple of days, then goes away. And can reoccur at any time.

So, I am seriously considering an ennucleation. I have an appointment with the doc on monday to discuss this. I cannot handle another episode.

Any comments?

Marie

Explore topics in this discussion:

Retinal detachment Surgery Pain Cataract Enucleation Glaucoma

21 replies

AEckerman

Oh, Marie, I am so sorry you are having so much pain. I can't even begin to imagine. Have you spoken with Dr. Chew about this?

My husband is blind in one eye, but the goal now is just to keep the eye alive until something might possibly be able to reverse the damage. Of course, that may never happpen but there's always hope. However, he does not have the pain that you have experienced.

Please keep me posted. You know you will be in my prayers.

~Alison

donnab

Marie,
My heart goes out to you. I am so sorry you are having to deal with this. Definately see your eye doc to discuss this. Do you know what is causing the pain? Is there anything that can be done to treat what is causing the intense pain in that eye? Also discuss the flashing in the eye, was it the eye responding to something (chinese herbs/supplements) or could it have been caused by retinal detachement flashing? I will keep you in my prayers and hope that you are able to find an answer that will be best for you. *hugs* Donna

marie3

The eye is painful because the pressure is so high. The radiation I received last year caused Neovascular Glaucoma. The back of the eye has been filled with blood for about a year. A current ultrasound revealed "new" blood in there and a webb of new blood vessels. That COULD be what triggered the pain. There has been so much blood inside the eye that even in a dialated exam, they are unable to see through to the back of the eye. I am completely blind in the eye. I used to see flashes of light because of a detached retina. My glaucoma doctor said that I would eventually lose that tiny bit of vision; which I did. I cannot see anything out of the eye; not flashes of light or even a bright flashlight held in front of the eye (I guess when you are able to see the "flashes" of light, it's still considered "something"). I started taking these "Eye Bright" pills from my Chinese medicine doctor. After a few months of taking these pills, I began to see the flashes of light every once in a while. That was an improvement in vision. But then the pain hit again and I stopped the "all natural" pills. I increased my eye steroids (pred forte) and added a few other eye drops. I don't like too many meds at once. The all natural pills were supposed to lower the eye pressure and increase vision. My main concern was the eye pressure. The pills didn't work.

Last time the eye flared up, I contacted Dr. Chew. She found it reasonable to remove the eye, back then.The eye pain is excruciating. No exaggeration. The docs are saying that the pain can strike at any time. I asked if it is possible for the eye to remain "quiet" for ever. The docs said it is possible, but not likely. What am I supposed to do? Just live with the possiblity of this eye pain striking at any time; knocking me on my butt for days. The pain is so bad!

Thanks Alison and Donna for your thoughts. Huggs to both of you!!!!!!!

I'm searching for any one with information on this. Any similar issues?

Marie

claireabell

Hi Marie

I have not been through a removal myself but my Mother went through the process at 40, a couple of years before she passed, she had many angiomas and complete retinal detachment, she was in incredible amounts of pain.

The time immediately after the surgery was the hardest from what i remember. The eye was removed and the socket filled with coral then covered with a graft of skin, the eye was then stitched closed to allow the wound to heal. While this healing process was going on her prosthetic was being made and painted (a porcelain disk was hand painted to exactly match her eye before the surgery). This was the time when she was most down about the whole thing because she became paranoid of people looking at her etc, however once the bandages were removed, her lids unstitched, and she was given a sterile translucent plastic prosthetic which she had to use for a good couple of months (the prosthetic had a couple of holes in to allow the wound to breathe and had to be cleaned thoroughly every day) she found that the pain had gone and so she stopped caring if one of her eyes was a bit ugly.

All sounds quite scary but the day she got her actual prosthetic she was over the moon, on cloud 9, she was no longer in pain, she had not been in pain since about a week or 2 after surgery, she looked at her self in the mirror and the prosthetic was so good that you could not tell the difference. I remember that the prosthetic moved too as result of the coral in the socket (not full range but a little left and right and up and down). she got married 6 months later and her wedding pictures were beautiful.

She really did feel it was worth it, one of the best decisions she made. She said it was hard to deal with before she got her porcelain prosthetic because she looked 'like something out of a horror movie' but it was worth it for the loss of pain.

I personally am pleased she had it done too because the crinkle she had on her forehead from frowning as a result of being in pain all of the time disappeared. she looked comfortable.

I also have problems with my eyes and if I end up in her situation I will not hesitate to go through the processes she went through.

Good luck with everything, I hope this helped in some way.

Claire

marie3

Thanks Claire! Your response helps a lot. The doctors in my group say that proshetic eyes have come a long way. Cosmetically, no one would ever know. They would attach part of the prosthesis to the muscle in the eye to allow movement. But, like your mom (rest her soul), the time period between surgery and receiving my permanent prosthesis, is very scary. Oh well, these are the cards we're dealt-deal with it. Right? Thanks again.

Marie

marie3

Joyce,

Do you have any input? You're the encyclopedia of this group (and that is not meant with any sarcasm).

Marie

joyceg98

Thanks, Marie! No encyclopedia here, just some thoughts, for what they're worth. I have not experienced this personally, but have spoken with many people who have, so here goes.

There comes a time when, because of pain or unsightliness the eye becomes a detriment, and it's time to enucleate. It's always a difficult decision because your eyes are an essential part of your beauty and the face you present to the world. For that reason you want to plan this carefully and be confident that you have the right team to do it.

First, the eye surgeon who will remove the eye. Interview this person, speak with some former patients, perhaps ask to meet someone who has been through it. That way you can "see the finished product" and speak with another patient about the process.

Second, you want to interview the ocularist. You want a "board certified ocularist". That's the person who will make the prosthesis. Your surgeon probably has someone he or she works with -- it's a team process. The surgeon builds the foundation for the prosthesis during the surgery, installing a peg or ball that the prosthesis will sit on, and wrapping the muscles around this base so that the prosthetic eye will "track" or move along with the remaining eye. This "tracking" is an essential part of looking natural.

When my son was going through this, we met with the surgeon and the ocularist. The meeting with the ocularist was fascinating, and was in fact almost more encouraging than the meeting with the surgeon. Where the surgeon was cautious about saying whether the tearing he was experiencing would be resolved by the enucleation, the ocularist was able to say that in her experience most of the people she worked with found that the tears went away. We were able to see the beautiful prosthetic eyes they made, and how they made them, with an astounding number of colors and tiny threads to resemble the capillaries visible in the remaining eye, to make them match.

By the way, there are mixed reviews about the coral implants. Some people tolerate them well, but there is a high rate of allergic-type responses to them, sometimes requiring surgical removal of the coral implant -- which is a bummer -- so I would hesitate to use coral. More often they use surgical steel, gold (my husband's was a gold ball about 1969) or an inert plastic. This is a good topic for discussion with your surgeon.

We printed an interesting article some years ago with an ocularist. See http://www.vhl.org/newsletter/vhl1998/98bcocul.php
Note that this article is ten years old, so the prices are out of date.

One of our former hotline volunteers, Eva, used to tell the story of when she finally had to face having her eye removed. She was a beautiful woman, and this was a wrenching decision. She did her homework, and actually flew to Washington DC to have the procedure done by the best surgeon/ocularist team she could find. (This was in the 1980's.)

On her way home on the airplane, with her new eye in place, she noticed that the man across the aisle from her kept staring at her face. Feeling very self-conscious, she asked him if anything was wrong.

"Oh, no," he said, "I was just admiring your very beautiful eyes."

She smiled her Lauren Bacall smile and replied, "You have no idea how much that means to me."

Wishing you beautiful, pain-free eyes.

Love,
Joyce

marie3

Thanks Joyce! Your input raised more questions for the surgeon. Like...... if the peg or ball implant is made of metal or steel, how will that affect an MRI of the head? The MRI is a giant magnet, the implant is metal, what happens now? What is the time span between the enucleation and receiving the permanent prosthesis? And that's a great idea to talk to someone who has already gone through the entire process.

I will feel comfortable in making the decision to enucleate, as long as I know I've exhausted all other options. And I keep asking myself.........Have I?
I'm so afraid of that pain again. And there are no guarantees that it won't come back. Is that nough of a reason to enucleate?

Marie

joyceg98

Someone who has been through it should answer the last paragraph. In the article I mention in my previous post, "Eventually the increase of pressure , deterioration, color change, cataracts, redness and pain will lead to the decision to have the eye eneucleated (removed). " In my son's case, he was also ultra light-sensitive and the eye made tears all the time, so he would sit talking with you, dabbing at his eye with a tissue.

As for metals, yes, it's a good question for the surgeon. Usually metals that are securely tied down are okay. The ones they worry about are the ones that could be moved by the MRI (like the old surgical clips) and could be moved out of place causing some damage. There is also the issue of "shine" -- the MRI waves might reflect off something metal and make it more difficult to see the soft structures they are trying to study.

Here are two more websites to check:

One from the American Society of Ocularists, with a Frequently Asked Questions (FAQ) for patients, and a utility to find a certified ocularist near you: http://www.ocularist.org/

And this one from Carolina Eye Prosthetics which has good pictures and descriptions of the process:
http://www.carolinaeyeprostheticsinc.com/guide-to-quality-prosthetics.html

When you get an answer to the MRI question, would you please share it here?

Many thanks and all best wishes,
Joyce

lrodriguez

Dear Marie,
I am soo sorry to hear what you are going thru. I can only imagine. My problems are pancreatic and kidneys thus far but as of 2-3 days ago I've been having crazy problems w my vision. Can you please tell me how your problems started as far as your eyes are concerned, please?? I also have a daughter out of five kids who has VHL and she has been having a lot of complaints in regards to her eyes and pain above her eyes so perhaps you may be very helpful to my daughter and/or myself. God Bless us all Thank you very much and may all your pains go away!

marie3

My eye problems started shortly after the birth of my 7 year old son. I didn't know about VHL until my eye tumor was discovered.

Shortly after my son was born, I went to my annual optometrist appointment at Sears Optical Dept. for a routine eye exam. I used to wear contact lenses, and an annual eye exam is required in order to renew a contact lense prescription. During the dialated exam, the optometrist discovered a mass in my eye. I wasn't experiencing any pain at that time. I wasn't experiencing any problems, and the tumor was pretty large when it was discovered. If I didn't wear contact lenses, I would not have known.

From there I was referred to an ophthamologist who followed me every 6 months for over a year. When I started to experience slight vision loss, he sent me to NIH and I entered a clinical trial. Over the course of one year, I received intravitreal Lucentis injections every four weeks. The Lucentis injections were supposed to target the blood vessels which fed the tumor. Treatment was unsuccessful. Approximately two years later, I was referred to a doctor at Massachusetts Eye and Ear Infirmary. I received 5 consecutive treatments of Proton Beam Radiation. The radiation did shrink the tumor, but left me with neovascular glaucoma. THIS is what is causing my eye pain. My body is forming new blood vessels to feed the tumor. And the drainage system in the eye is not functioning. It was explained to me like this........imagine pumping up a basketball with air........ and pumping, and pumping, and pumping. My eye is being filled with fluid, but it's not draing out. This is what causes all the pressure, and pain.

I can refer you to some retinal specialists, depending where you live. I live in Chicago. Please feel free to ask all the questions you want. I hope I can help.

Joyce, thanks for all the web addresses. The sites raised more questions-------enucleation or evisceration? I will inquire about the metal implants and MRIs. I will see my Enucleation doctor tomorrow. I'll get back as soon as I find out more information.

Thanks,
Marie

FranMott

Hi Marie:

Back in 1960 I lost my vision in one eye due to a tumor in front of the optic nerve. The vision extent was only a distracting blur by the time the cause was discovered. Not knowing much about optic nerve tumors in those days, they decided the best move was to cut the optic nerve so it could not spread back into the nerve. That move, in those 'old' times was actually okay for me because having no vision in that eye made it much easier for me than the distracting blurriness. (Now we know that even saving the ability to see light can be valuable if one should loose sight in the other eye.) I had an excellent eye surgeon from Germany who was visiting in the U.S. There were no retinal surgeons in those days. Although totally blind (not even any light perception), the eye appeared completely normal with full movement, so I kept it.

It did develop problems with time. The first one was almost ten years later and the description of your pain pretty much says it all. The fluid could not escape because there was slow bleeding inside and the vitreous (jelly-like stuff filling the eye ball) was thickening. The eye still looked normal but the pain was constant. This was actually a type of glaucoma from the eyeball starting to deteriorate so he did a glaucoma surgery on it, putting in a couple of extra tiny holes in other spots around the iris to keep letting the fluid out….more than normal, in case one should clog up down the road. This stopped the pain completely and the eye still looked normal. The holes were not visible and did not matter because the eye was blind anyhow. Perhaps if the eye still looks satisfactory to you, such a procedure might buy you more time to decide what you want to do next. If this is the case, it may be something to talk to ask your doctor about.

About 6 years later, my eye became painful again, but a different pain…as though something was sticking in it. He did an alcohol block which permanently numbed up the little nerves (ganglia) and to this day there has never been a bit of pain in it. The eye, however, is extremely bad looking now. With time it is not unusual for a blind eye that has had a lot of things done to it to gradually deteriorate. Mine grew larger blood vessels on the inside and then on the outside, and a cataract started forming making the pupil appear white. The eye still moved perfectly and did not hurt, so I tried to get an eye shell for it. (-a giant painted contact lense that covers the entire visible part of the eyeball). They first had to make a mold and then gave me a clear plastic temporary shell to get used to. The mold, fittings, and taking the shell in and out created suction on the deteriorating eye and this encouraged huge engorged blood vessels to start appearing on the outside of the eyeball. –thus no eye shell. It was definitely time for an artificial eye, but the eye had no pain and other unrelated VHL issues cropped up that definitely took precedence.

The eye continued to deteriorate, and the eye lid began to droop over it from lack of use of the muscles. The eye basically looks like it is almost completely shut now, but at least nobody sees how bad it looks underneath. I’ve been evaluated for different artificial eyes and go every other year for that so that my records remain ‘fresh’ in case the eye may one day suddenly start to have an uncontrollable hemorrhage or becomes painful and removal is necessitated. These are very real risks for me now.

An artificial eye is not a good choice in my particular circumstance for the following reasons. The inside of my eye is calcified and/or filled with tumor. There’s a good chance that the tumor is extended into the orbit in the back, which would eliminate a lot of choices of what could be done. Next, any kind of cover (the eyeball still moves perfectly) would be difficult to form because the top of the eyeball is soft and starting to cave in somewhat. The eye ironically still moves perfectly, so that’s very disappointing. They do not usually see eyes this deteriorated, because usually eyes have to be removed due to pain long before they get this bad. Therefore the risk is higher than normal (and there is a slight risk for anyone) that removal of my eye could result in permanent pain. The eye is pain- free now. There have even been reports (but they are uncommon) of phantom pain for people whose eyeballs were not so deteriorated as mine, so the odds are against me. And then, because of the long time and condition of the eye in my particular case, there is a good chance that the eye socket would reject any materials put in it.

The closed eye looks strange and really messes up photos, but I’m not photogenic anyhow. If I were younger and in the job market, it would definitely be a hindrance. I’m retired and true friends not only do not care about its looks, but do not even pay attention or notice it after they have known me for a time. I explain what is wrong with the eye when first meeting people or when doing public presentations. That immediately eliminates curiosity, puts people at ease, opens the floor for any questions someone has about it, gives me another opportunity to talk about VHL, and lets people pay attention to me instead of my closed eye.

Would I have done things differently if I knew then what I knew now? Definitely. I probably would have gotten an artificial eye at the first sign of change in its appearance. Would there have been risks back then of not being able to wear a prosthesis, or of infection, or of developing on-going pain, etc.? Of course. There is always a risk, but it would have been a low risk then compared to now.

When considering getting an eye removed it’s important to ask what all the options are, what are all the possible risks associated with each, and what percentage of the time these things happen. That way you can put it all in perspective. The next step is to get one or more other opinions, asking them the same things. I hope my experiences and these suggestions will help you make your decision and maybe even find something to help with your pain in the meantime. Beside appearance concerns, an eye is part of your body, just as a hand or a foot is, and the decision to have it removed is never easy. Good luck to you – may whatever you do help you live a happy and pain-free life.

Oh- one more thing: they have screws they use which they often refer to simply as ‘metal’ which are made of titanium. Titanium is not magnetic. I’ve got one in my jaw and my daughter has titanium screws in her knee and they do not interfere with our MRIs…MRIs are even used to look at that knee.

Fran
Michigan

marie3

Thanks Fran. It sounds like you and I share similar issues. Thanks for your feed-back.

My doc also said that the titanium peg would not interfere with an MRI, BUT it would interupt a CT scan of the head.

As for surgery.....The doctor said the ball that the muscles are attached to is made of plastic. This would give the prosthesis some movement. If I decided to have the titanium peg put in, that surgery would take place approximately 6-9 months later. In that particular surgery, they would drill the peg directly into the plastic ball. The prosthesis would sit on the peg, and therefore give the artificial eye more movement (it would "track" the natural eye better).

My Enucleation doctor is not pushing surgery. He says that the eye still looks good and the cornea is still in tact. Overall the eye is handling the high pressure pretty well. He thinks MAYBE the pain hit because I lowered the dose of my eye steroid (predforte) and because I completely went off of another drug (cosopt-which lowers the eye pressure).
I stayed on the atropine which dialates the pupil.

I don't know what to think. I'm afraid. I'm afraid of the pain of keeping the eye. I'm afraid of surgery and all that goes with removing the eye. This is my face. Not just an ugly scar that you can hide with clothing. My face. It would be an empty hole where my eye once sat. I just don't know.

Thanks friends,
Marie

Poodleperson

Hi Marie

Glaucoma is very painful--it felt like my eye was going to push right out (in between the headache and lots of heaving). I also had cataracts and since the vision was long gone the eye was pointed toward my nose. Not very attractive at age 18.

When everyone from my ophthalmologist to my parents and a second opinion from another eye surgeon was agreed on, the eye was removed--and so was the pain. This was in 1976. This procedure has come a long way as has implants and prosthetics.

There was post surgery pain of course and 6 weeks in an eye patch. When everything was healed and I got my new eye it was wonderful.

Since my first prosthesis I have had 5 more--as one ages things change shape. My original implant, a surgical grade plastic was rejected after all that time and another tumor formed in the orbit. I had a new implant made of my own body tissue last year.

The worst part of this, for me, was I knew no one who had even heard of losing an eye. I even asked my docs if there was anyone I could talk to about it--especially a female. It would have helped me when I was young just to talk about it.

It was the only decision I could have made. The unhealthy eye looked terrible. I have a great ocularist and the eyes he has made for me are amazing. Nobody ever asked me what was wrong with my eye--some people still don't realize it's artificial--after years of knowing them!

I agree with what you said about your face. It's right there! So obvious! No chance to hide it! I felt that way too.

Please contact me if you ever want to talk about it.

Best to you-

Katie

joyceg98

Marie,

enucleation is removal of the eyeball.

evisceration is removal of the viscera, internal organes in the abdomen, which is not relevant here.

Thanks, Katie, for sharing your story.

Best wishes to all,
Joyce

Blind_Kiwi

Hi Marie,

I am due to have my second eye removal this year, I will have to change my user name to noclops then. hahaha. Pain and overall appearance are the two main issues. I will have another coral implant as this worked fine the first time. I have never had my eye pegged and never will. When everything settles down the plastic cover should track fine without pegging. The risk of infection with pegging is very high . I have gone through six or seven plastic coverings in sixteen years as the shape of your implant and all the tissue changes all the time. Irritation and "gunking" are a sign that you need a refit. As for cleaning etc, now days its once a month for me as everything has settled down and there is no need. I will probably change my eye colour now that I will have two plastic eyes to a dark brown. Lighter colours dont work well in the evening and people notice small pupils etc. That all said it is a well worth while process but it is a long one. All the best. Greg

marie3

Thanks Guys!

Katie, I think I will be contacting you. Thanks for your support.

Greg, I think it's great that you can make jokes of your situation. You are a strong individual. Seriously, thanks for your input.

I won't keep this discussion going. I'm going to "chill" for a bit and take everything in. I deeply appreciate all the feed-back.

THANKS FRIENDS!
Marie

FranMott

Hi

They do eviscerations for eyes, but we commonly think of them for abdominal organs, as Joyce mentioned. Perhaps those are more common.

At the risk of over-simplifying it, an evisceration on the eye is removing all the stuff inside and filling the empty ball (eyeball) with a material to make it hold its shape. In the old days they used silicone, but there may be other materials for it today –don’t know. There are a couple of other more minor things they do to assure the eyeball’s shape will stay the same, but that is the basic story.

The eyeball will look bad, so they make a cover for it that will look just like your other eye. It’s like a giant contact lense that covers all of the surface of the eyeball that can be seen when someone looks at you. The eye should move just like it always did because it is still connected to all the muscles. With the cover (shell) on it, it looks just like your other eye. That, of course, depends a lot on the skills of your team.

Eviscerations are less traumatic for some people, but can not be done in every case. Depending on the particular situation and health of the eyeball and socket, complete eye removal may be easier for other people. As far as appearance is concerned, in some cases the enucleation (complete eye removal) results in a better moving eye, and in other cases the evisceration does. The outward appearance is great today with both. I've seen people who have had enucleations and people who have had eviscerations done and I can't even figure out which is seeing eye when they've asked me to guess. Again, a lot depends on the skill of the doctors and ocularists. Sometimes the movement of the eyes with the evisceration might be a little bit better, but the doctor can advise on that. No one option is the best for everybody to assure the best appearance. It depends on the individual case and that’s a reason why it is so important to get several opinions from doctors with expertise.

Fran
Michigan

joyceg98

Fran is right. According to Wikipedia:

Evisceration is the removal of viscera, (internal organs, especially those in the abdominal cavity). This can refer to:

- disembowelment, removal of the internal organs of an animal or person.
- evisceration (autotomy), ejection of viscera as a defensive action by an animal.
- evisceration (ophthalmology), removing the internal material from the eye.

Thanks, Fran.

Regards,
Joyce

marie3

My doctor described an eviceration in detail just as Fran stated. He also added that when you leave exposed tissue ( as in an evisceration ) there is a slight chance that the healthy eye could have symptomatic vision loss. And he also added that an evisceration is less traumatic for people, and an easier surgery. My doctor said he would probably prefer to do an ennucleation-if I wanted surgery.

Fran-- can I contact you sometime?

Marie

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