Discussions By Condition: Eye conditions

ICE Syndrome

Posted In: Eye conditions 137 Replies
  • Posted By: Anonymous
  • October 12, 2006
  • 10:10 PM

I have just been diagnosed with ICE syndrome, for 3 years I have been constantly going to a special Eye Hospital as diagnosed with glaucoma (left eye only), after 8 mths I told them I was getting patches of blurred vision like a curtain being pulled infront of my eye. They changed my drops frequently,and had know idea what was causing problem. And felt glaucoma had probably been caused by a accident over 25 yrs ago. Vision progressivley got worse headaches started, pain in eye. Now over 3 years later finally have a diagnosis because ended up in Emergency Dept of local hospital with dizzyiness along with other symptons. Finally a young doctor examined me told me right away he didnt feel this could have anything to do with accident that many yrs prior. So he started to look for other cause and came up with ICE. Several head doctors since in last 10 days and we have an offical diagnosis. My question is if this had been found 3 yrs ago could they potentially have treated and saved my eye sight at the level it was at then?

Reply Flag this Discussion
  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you.
    Gunrunner 31 Replies
    • January 2, 2008
    • 04:15 PM
    • 0
    Flag this Response
  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you. i had 2 small injuries within 6 months of each other. they were both like a scarpe/bruise type of injuries. they are hard to explain. i received them at work. but neither was bad enough that i went to the doctor. i am curious on the herpes simplex virus. since i was a kid i would get fevor blisters bad. one point because of a severe sunburn they covered my whole mouth. and the glaucoma specialist that i went to told me that was a new working theory. but on the injury it may have just been just coincidence but the distorted pupil showed up within the same year as the injuries occcured. but i was misdiagnosed. i hope this helps and good luck with your transplant, i have been lucky in that i am just now starting to get the migraines. but besides the light issues i have had no other problems. although i am amazed this year how bad the snowblindness can get. goodluck again
    wilson1 7 Replies
    • January 3, 2008
    • 06:04 PM
    • 0
    Flag this Response
  • Taosblue,I did have a cataract because of the tribec. Halos at night around lights and a real sensitivity to light with headaches were my clues. Had to get it replaced at around 2 years after the first surgery. A good news bad news story in that my far vision was blured but my near vision became very good, could read fine print without reading glasses. End result, right eye became distance and left became reading. Monocular vision. Something that I had gotten use to from my days as an aviator flying with early night vision devices. I adjusted quickly. Glasses were an option but could only correct the vision to 20/40 as I was 20/50 to me that was just a bother. The tribec can be discouraging because you don't see or feel any improvement. But it saves the eye. I was lucky in very early diagnosis and treatment so I lost only a very small sector of vision that I easily adapted to by using a technique called scanning. Any good pilot uses it to fly instruments. Delay surgery for as long as you can. If the drops or even pills work use them. I had no choice though as they stopped working literally between visits. I went from 22 to 40. So we had to cut fast. One other thing as you have surgeries the eye gets more sensitive to light and pressure. I can tell changes in the weather because of it. If you swim make sure that you wear water tight goggles, especially in rivers and lakes. I decided to not take the chance and stay in swimming pools.
    Gunrunner 31 Replies
    • January 26, 2008
    • 04:54 PM
    • 0
    Flag this Response
  • Does Ice Cause Severe Migraines And If So Is There A Treatment. The Last Time I Went To The Doctor He Stated That I Have A Small Cataract. My Pressure Seems To Be Fine I Don't Take The Drops He Precribed Because Of Money When I Go To See Him The Pressure Is Within Normal Range, I Had One Elevated Pressure Reading. But I Feel Like I Am Not Getting Answers. I Hade A Hole At The 4:00 Position And The Last Time I Went To Him It Was In A Different Position. He Also Stated That I Was Stablized But Yet At The Same Time He Told Me About The Cataract. I Am 44 Yrs Old And Feel Like I Am Too Young For This To Be Normal And Not Another Symptom Of Ice. The Migraines Are Coming Once And Twice A Week For The Last Month I Was Put On B/p Meds And Am Trying To Figure Out If That Is The Cause Also. But I Had One Before I Went On The Drug And I Have Never Had Them Before. I Had One For 4 Days Straight Last Week And The Adjusting To Light Is Always Worst.
    wilson1 7 Replies
    • February 13, 2008
    • 04:04 PM
    • 0
    Flag this Response
  • Wilson1,I was several days shy of 41 when I was diagnosed with ICE. Over the years have had the run of it to include cataract surgery. Headaches and light sensitivity were real clues to me plus the halo around lights at night. Sunlight is your real big issue as the eye is wide open. Invest in a very good pair of UV filtering neutral density sunglasses. You may find that wrap arounds are better. I prefer straight lens but that's me. I also wear billed hats during periods of strong sun to help shade my eyes. BTW, protecting both eyes is critical. If you work on the computer a lot and particularly in an office with florescant light, get glasses (even if yu don't wear a prescription) made with number 2 pink lenses. Get yourself checked out for other reasons as well.Good luck!
    Gunrunner 31 Replies
    • February 13, 2008
    • 05:33 PM
    • 0
    Flag this Response
  • Hi i am a female of 28yrs old from the UK. In March 2003 i was referred to the eye clinic at the hospital by my optician who noticed my pupil was mis-shaped in my left eye. I would go for regular appointments and be told that a bad case of conjuncivitis had caused it, or that it was an abnormal development and i was born with it and within time it has changed, no-one could tell me anything definate about what and why it was happening. About 2 yrs ago i was told it was ICE and even then they couldn't tell me any info about it, just to keep going for 6 monthly check-ups, to check the pressure and the eye itself. My last check-up about 6 months ago (I have my next check-up appointment next Thursday), i had photos taken and was told a patch of my iris is now thinning.My left eye is slightly blurred and i do suffer with frequent headaches and also am sensitive to light. My pupil has got worse over the last couple of months, being pulled up-wards towards the edge of the iris. Do i have ICE as i don't suffer from Glaucoma or will it come at a later date for me?
    davies28 2 Replies
    • February 14, 2008
    • 10:09 PM
    • 0
    Flag this Response
  • i have started getting migraines along with minor headaches. i am trying to find out if this is connected to the ice condition. does anyone else get these? i can go for a week without anything wrong and then i will get a migraine and then other times i always seem to be on the verge of one for up to 5-7 days. the light sensitivity gets worse. i have started a new med for high b/p right around the same time but i had the very first one (migraine)a week before i started the new med. i have to agree that since doctors seem to know so little about this disease it is good to hear from others that have it. hopefully we can learn from other experiences as well.
    wilson1 7 Replies Flag this Response
  • Hi i am a female of 28yrs old from the UK. In March 2003 i was referred to the eye clinic at the hospital by my optician who noticed my pupil was mis-shaped in my left eye. I would go for regular appointments and be told that a bad case of conjuncivitis had caused it, or that it was an abnormal development and i was born with it and within time it has changed, no-one could tell me anything definate about what and why it was happening. About 2 yrs ago i was told it was ICE and even then they couldn't tell me any info about it, just to keep going for 6 monthly check-ups, to check the pressure and the eye itself. My last check-up about 6 months ago (I have my next check-up appointment next Thursday), i had photos taken and was told a patch of my iris is now thinning.My left eye is slightly blurred and i do suffer with frequent headaches and also am sensitive to light. My pupil has got worse over the last couple of months, being pulled up-wards towards the edge of the iris. Do i have ICE as i don't suffer from Glaucoma or will it come at a later date for me?i was not diagnosed with glaucoma for several years after my initial diagnosis. i was misdiagnosed for about 7 years. they said i had something called addies pupil and i really felt i was blown off. my first symptom besided the distorted pupil was rainbow halos around lights. eventually i started seeing lightning bolt type steaks coming out from the halo. i hope this helps headaches started getting so bad that i tried the pink tinted lenses in my sunglasses ( someone in this forum suggested it) it did seem to help with the light glare. i am trying to figure out if light sensitiviy is giving me the headaches and migraines. i don't seem to do well with indoor light as well as i use to
    wilson1 7 Replies Flag this Response
  • I've run the entire gamut here. Light sensitivity was the very first one. Headaches came on after that but never to the degree of a migrane.
    Gunrunner 31 Replies Flag this Response
  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you.How did the transplant go? I was diagnosed with glaucoma by my eye doctor probably about 7 or 8 yrs ago after I had been clearing Juniper on my property and got poked in the eye with a branch. It hurt, but it wasn't bad enough that I even went to the Dr then. Just happened to go for a regular eye exam since I hadn't been in many years. The regular Eye Dr. handed me off to a Glaucoma Specialist that joined their group at least 4 or 5 yrs ago. He put in an Ahmed Glaucoma Valve to keep the pressure down Jan '05 & it worked for about a 1 1/2 yrs before the endothial cells shut it down. Just becoming light sensitive. Started using Ghee (a component of butter, Ayurveda treatment) daily a few yrs ago when by eye was so dry it was hurting very much, and none of the drops helped. Stopped the ghee for a few weeks about 5 months ago and experienced a corneal crisis. The cornea became very inflamed. Now the Glaucoma Specialist has handed me off to a Corneal Surgeon that wants to do a transplant. Decided to try other alternatives first before going forward with the transplant.
    jojo620 3 Replies
    • August 17, 2009
    • 00:53 AM
    • 0
    Flag this Response
  • Beforehand, excuse me for my English, I'm a Dutch 32 year old woman. 4 years ago, I started having blurred vision in my left I when I had too much to drink the night before. Also, my left pupil was sometimes two times as big as my right. I was sent to a hospital by my general practitioner. The opthalmologist didn't see anything wrong, ran some tests and thought of a heart disease. A quick check proved otherwise. Then he thought a brain tumor might be the cause. Thank god this wasn't the case. By then my vision started getting blurred, even without drinking the night before. This caused headaches. I went back to the opthalmologist and told him that I thought the problem was with my eye and asked if he could have another look. He checked my Intra Ocular Pressure which was 40 in my left eye. I was quickly referred to an specialized Eye Hospital. They started me on an regiment of different eye drops. Nothing worked, my eye pressure stayed the same. One set of drops even raised my eye pressure to 56, after which I was submitted to the hospital for a night to get some intravenous stuff.I had to come in every week, which became a nuisance since I had to take time of work every time. Whem my opthalmologist was on vacation I got a substitute. Shocked by my enduring high eye pressure, she wanted to do a trabulactomy that same day. Luckily an other opthalomologist decided to have a look and suggested ICE syndrome. Two weeks after I got a Confo scan which confirmed the diagnosis. Two weeks later they inserted a Baarveld Implant in my eye (a little tube between the eye chambers). My eye pressure dropped to 10 and stayed 10 in the following 2,5 years. Recently, my eye pressure has been rising slightly (IOP 15), for which I have to use one drop of Timolol daily. My eye sight is perfect. The only thing you see is that my left pupil is bigger than the right (especially when the light is bright) and the color of my left eye is slightly muddy. But all in all, it is ok.
    Anonymous 42789 Replies
    • February 8, 2010
    • 00:30 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I read all 10 pages and one thing is clear, I probably have surgeries in my future. If anyone comes across these messages and has a different story, please tell it. I would very much like to hear that someone out there has lived with ICE for 30+ years and, at the most, had to take eye drops. Wishful thinking.I am 24, male, and was diagnosed yesterday with ICE in my right eye. I noticed it 8 months ago when it looked like my pupil had been smudged up and towards my nose. I have no glaucoma and no other issues other than: the off-center, oblong pupil; light sensitivity and very slight blurring. Needless to say, and though it won't matter in the long run, I caught this early.I am scared, but hopeful. Like someone else pointed out, medical science may progress drastically in the next 20 years. The most frustrating thing about all this is that there is so little known about ICE and symptoms are treated as they appear instead of prevented.It seems that pain is only an issue if/when cornea issues arise, so I'm glad for that. Glaucoma is (supposedly) painless, which is why it is so dangerous and a lot of people do not treat it until it has already damaged the nerves and vision is permanently lost. My grandfather (not blood related) has had glaucoma for over 20 years and has only been on eye drops, no surgeries or complications.Anyways, as this is the best/only community of patients I've found, I'll be sticking around.Cheers.If you happen to find somone who knows more, let me know! I found out last Feb.2010,and the drops I take are killer, I think Id opt for the surgery if I could get rid of the drops!! From no taste on my tongue,and then thrush in my mouth....to a rash from head to toe not to mention the stomach problems!It kills me to know that they DONT know where it comes from. Yes there are theories about Herpes,Mono and trama to the eye, but nothing has been proved.I find the only thing that bothers me the most so far is when the pressure is high, the headache. I wear and eye patch if the sun is too much, and pretend to be a pirate!
    Anonymous 42789 Replies Flag this Response
  • Thanks for talking about the worst case scenario and making it not so very scary!jojo620Thanks also for sharing this info. My husband is the one with ICE in left eye now for about 5 years. We go to a cornea specialist. Hoping a transplant is in the very near future as the pain, swelling, headaches are getting unbearable. But am very concerned if transplant doesn't take...then what? Thanks again.
    mlphillippe 3 Replies
    • December 10, 2010
    • 03:38 AM
    • 0
    Flag this Response
  • I just stumbled onto this forum. I have had ICE for about 12 years now in my left eye. It was diagnosed at a very early stage during a routine flight physical. I have had specialized care since. My initial difficulties were light sensitivity and resulting headaches. That was corrected with pink number 2 glasses (prescription has changed over the years). From there intraocular pressure increases that were controlled with medication for about 5 years. Finally a tribec filter operation had to be done. I have been holding my own with intraocular pressure since (bounces between 9 and 15). I visit my ophthalmologist every 3 months and have a field test every year. Two years ago I had to have cataract surgery. Around the end of September of 2007 I began to notice a significant loss in visual acuity in the ICE eye. I was checked in Nov and Dec and sent to a cornea specialist in Dec. We are in the process of setting up a cornea transplant now. I am on sodium chloride drops to help dry the cornea some and have just read where using a blow dryer in the morning is helpful as well. I am interested in causes and have read a number of articles that this is now believed to be caused by herpes simplex virus. But someone posted here that they had had an injury. I had a slight injury about 8 years prior to this being discovered. Are there similar histories? Thank you. Hello, I noticed you have posted quite a bit on this topic and I didn't know if you were still around and active. I have ICE as well. I was diagnosed in both eyes with cogan reese in 1997. I have good visual acquity and have had two trabs. The focus of my care has been glaucoma.
    MissShannon 1 Replies Flag this Response
  • Thanks also for sharing this info. My husband is the one with ICE in left eye now for about 5 years. We go to a cornea specialist. Hoping a transplant is in the very near future as the pain, swelling, headaches are getting unbearable. But am very concerned if transplant doesn't take...then what? Thanks again. Well we are now four weeks from the transplant. Surgery went very well had a cataract removed and then the transplant. The pain disappeared immediately. Pressure has been holding pretty well. Day of surgery 25 then day one down to 20...Two weeks after still holding at 20. No significant improvement in vision in that eye. We are still hopeful but the eye was in pretty bad shape. Glaucoma, cataract and ICE....still praying but no pain is wonderful. Have to be so careful now. Can't lift much of anything doctor just wants the eye protected as much as possible. Swelling is going down as well. Glaucoma drops have started to cause a little shortness of breath so now am on two different ones. Steriod (Pred Forte) four times a day. Ointment (bacitracin) at night. Followup in another two weeks....Happy with outcome so far.
    mlphillippe 3 Replies Flag this Response
  • Hey all, i just stumbled upon this forum by accident, what a relief though to find out that there are others out there like me. I am a 28 year old male who was diagnosed with ICE in 2012, i literally had no idea of it until severe pain (worst headache in the world) led me to the local accident and emergency which immediately sent me to the main general hospital on my island. Let me describe my pain before i ended up hospitalized, i literally felt my like my eye was pounding and wanting to explode (iop was recorded at 50), my headaches were so intense, i cold sweated and banged my head on the wall for 2 hours before deciding to check myself to the hospital. I was given IV fluids (saline) and a drug called medazolam for the pain. None of the doctors had any clue of my condition. I remember laying next to a guy who had been shot 12 times in the casualty department, me being all drugged up and him in extreme anguish, i thought maybe i had the better end of the stick for now. Time flew by slowly for the next two days like paint drying on a wall. I remembered waking up sometime in the next day on a hospital bed on a ward with people from all different backgrounds, my parents, gf and sister were there with my clothing and supplies informing me that the doctors needed me to stay until..... I was reluctant, but mentally and physically too weak to decide against, i couldnt muster the strength to wash off but the drugs gave me the serenity i needed to finally sleep, i closed my eyes and was out cold till the next day. Finally on the 2nd morning at the hospital i awoke in the wee hours to a dark hallway and nurses and security guards sleeping away, i felt dirty as a used rag and weak and fragile as an old vintage document. I attempted to get up only to realize that my bag of drips was too far away to reach, i felt helpless but called out to a nurse and the proceeded to slowly prod towards the washroom for the first time in hours. My time at the hospital was frustrating to say the least, i stayed for 2 weeks whilst being treated for closed angle glaucoma with eye drops. No surgeon or consultant wanted to go in my eye because they couldnt determine what exactly i had hence they loosely treated the glaucoma. I was discharged and sent home with a costly preccription of drops and diamox. After a week or so at home with no progress, my right eye started reddening like the red sea and my head pains restarted ( not again right??? !!!!), i decided not to go back to the hospital so i went to a private corneal specialist the very next morning. I sat in the waiting room with my headache, not as severe as the first time but still not comfortable, when he finally saw me, he checked my iop and it had gone back to 44, he gave me another diamox immediately and sent me to a glaucoma specialist. Enter the specialist that diagnosed me with ICE, as i walked in she checked my iop again, and gave me a combination of drops that brought my iop down to 31. This doctor put me on a schedule for 2 weeks to see if my iop would go down, whilst doing different tests on my eye and telling me about the herpes simplex link. She ultimately told me that i NEEDED surgery on my right eye, and my shunt was placed in my eye. The surgery was successful and the recovery went well. After the surgery a year ago, ive had numerous check ups and she explained that my endothelial cells were 'misbehaving' and i would need a corneal transplant and i would also have the risk of a cataract. Ive grown accustomed to the downfalls of this disease so i wasnt shocked anymore to hear this. My family decided that i should visit the U.S. for a 2nd opinion ( i live in the Caribbean btw). I flew to Miami on September 6th 2013 and spent 2 weeks in Florida. I've read most of the posts here and realized that what i was told in Miami hadnt been mentioned here. So after contacting numerous eye specialists in Florida, i decided to visit Basco Palmer eye institute. I was told to come in and they would look at me, putting this into perspective, i am the only person on my island of 1.4 million ppl with this condition, no hospitals had any cases of it and my surgeon had only seen 3 cases in her time in the U.K. Back to Miami, as this is a research centre, every resident eye doctor wanted a piece of me like a prized fighting bull. I arrived there at 7 am and had been seen by at least 6 resident doctors in between very expensive tests that i had to foot because of. no insurance, ive spent almost 20,000 USD on my eye in this span. At about 4pm that day, the eye specialist at Basco Palmer was finally ready for me. He basically explained what i knew before coming to the states and he said that ICE is extremely rare and he'd seen a handful of people with it. He examined my shunt and said it was perfectly inserted and checked my corneal thickness which he said was very thick due to the condition. The specialist also told me to apply sodium chloride to the eye in the morning to help with the cloudiness. He also said that a partial DSEK procedure can be done to solve the corneal issue which was music to my ears but he didnt advise surgery right away though. The consultancy was very expensive though, cost me 1500 USD just for that one day, but at least i found out about the DSEK procedure so im guessing you guys can check it out to see if it helps. Im sorry for my long write up, but ive never had anyone to talk to about it, so i just wanted to help everyone suffering with ICE with the info ive gained. Nigel.
    Anonymous 5 Replies
    • November 15, 2013
    • 10:07 AM
    • 0
    Flag this Response
  • Hey all, i just stumbled upon this forum by accident, what a relief though to find out that there are others out there like me. I am a 28 year old male who was diagnosed with ICE in 2012, i literally had no idea of it until severe pain (worst headache in the world) led me to the local accident and emergency which immediately sent me to the main general hospital on my island. Let me describe my pain before i ended up hospitalized, i literally felt my like my eye was pounding and wanting to explode (iop was recorded at 50), my headaches were so intense, i cold sweated and banged my head on the wall for 2 hours before deciding to check myself to the hospital. I was given IV fluids (saline) and a drug called medazolam for the pain. None of the doctors had any clue of my condition. I remember laying next to a guy who had been shot 12 times in the casualty department, me being all drugged up and him in extreme anguish, i thought maybe i had the better end of the stick for now. Time flew by slowly for the next two days like paint drying on a wall. I remembered waking up sometime in the next day on a hospital bed on a ward with people from all different backgrounds, my parents, gf and sister were there with my clothing and supplies informing me that the doctors needed me to stay until..... I was reluctant, but mentally and physically too weak to decide against, i couldnt muster the strength to wash off but the drugs gave me the serenity i needed to finally sleep, i closed my eyes and was out cold till the next day. Finally on the 2nd morning at the hospital i awoke in the wee hours to a dark hallway and nurses and security guards sleeping away, i felt dirty as a used rag and weak and fragile as an old vintage document. I attempted to get up only to realize that my bag of drips was too far away to reach, i felt helpless but called out to a nurse and the proceeded to slowly prod towards the washroom for the first time in hours. My time at the hospital was frustrating to say the least, i stayed for 2 weeks whilst being treated for closed angle glaucoma with eye drops. No surgeon or consultant wanted to go in my eye because they couldnt determine what exactly i had hence they loosely treated the glaucoma. I was discharged and sent home with a costly preccription of drops and diamox. After a week or so at home with no progress, my right eye started reddening like the red sea and my head pains restarted ( not again right??? !!!!), i decided not to go back to the hospital so i went to a private corneal specialist the very next morning. I sat in the waiting room with my headache, not as severe as the first time but still not comfortable, when he finally saw me, he checked my iop and it had gone back to 44, he gave me another diamox immediately and sent me to a glaucoma specialist. Enter the specialist that diagnosed me with ICE, as i walked in she checked my iop again, and gave me a combination of drops that brought my iop down to 31. This doctor put me on a schedule for 2 weeks to see if my iop would go down, whilst doing different tests on my eye and telling me about the herpes simplex link. She ultimately told me that i NEEDED surgery on my right eye, and my shunt was placed in my eye. The surgery was successful and the recovery went well. After the surgery a year ago, ive had numerous check ups and she explained that my endothelial cells were 'misbehaving' and i would need a corneal transplant and i would also have the risk of a cataract. Ive grown accustomed to the downfalls of this disease so i wasnt shocked anymore to hear this. My family decided that i should visit the U.S. for a 2nd opinion ( i live in the Caribbean btw). I flew to Miami on September 6th 2013 and spent 2 weeks in Florida. I've read most of the posts here and realized that what i was told in Miami hadnt been mentioned here. So after contacting numerous eye specialists in Florida, i decided to visit Basco Palmer eye institute. I was told to come in and they would look at me, putting this into perspective, i am the only person on my island of 1.4 million ppl with this condition, no hospitals had any cases of it and my surgeon had only seen 3 cases in her time in the U.K. Back to Miami, as this is a research centre, every resident eye doctor wanted a piece of me like a prized fighting bull. I arrived there at 7 am and had been seen by at least 6 resident doctors in between very expensive tests that i had to foot because of. no insurance, ive spent almost 20,000 USD on my eye in this span. At about 4pm that day, the eye specialist at Basco Palmer was finally ready for me. He basically explained what i knew before coming to the states and he said that ICE is extremely rare and he'd seen a handful of people with it. He examined my shunt and said it was perfectly inserted and checked my corneal thickness which he said was very thick due to the condition. The specialist also told me to apply sodium chloride to the eye in the morning to help with the cloudiness. He also said that a partial DSEK procedure can be done to solve the corneal issue which was music to my ears but he didnt advise surgery right away though. The consultancy was very expensive though, cost me 1500 USD just for that one day, but at least i found out about the DSEK procedure so im guessing you guys can check it out to see if it helps. Im sorry for my long write up, but ive never had anyone to talk to about it, so i just wanted to help everyone suffering with ICE with the info ive gained. Nigel.
    Anonymous 5 Replies
    • November 15, 2013
    • 02:37 PM
    • 0
    Flag this Response
  • Hey all, i just stumbled upon this forum by accident, what a relief though to find out that there are others out there like me. I am a 28 year old male who was diagnosed with ICE in 2012, i literally had no idea of it until severe pain (worst headache in the world) led me to the local accident and emergency which immediately sent me to the main general hospital on my island. Let me describe my pain before i ended up hospitalized, i literally felt my like my eye was pounding and wanting to explode (iop was recorded at 50), my headaches were so intense, i cold sweated and banged my head on the wall for 2 hours before deciding to check myself to the hospital. I was given IV fluids (saline) and a drug called medazolam for the pain. None of the doctors had any clue of my condition. I remember laying next to a guy who had been shot 12 times in the casualty department, me being all drugged up and him in extreme anguish, i thought maybe i had the better end of the stick for now. Time flew by slowly for the next two days like paint drying on a wall. I remembered waking up sometime in the next day on a hospital bed on a ward with people from all different backgrounds, my parents, gf and sister were there with my clothing and supplies informing me that the doctors needed me to stay until..... I was reluctant, but mentally and physically too weak to decide against, i couldnt muster the strength to wash off but the drugs gave me the serenity i needed to finally sleep, i closed my eyes and was out cold till the next day. Finally on the 2nd morning at the hospital i awoke in the wee hours to a dark hallway and nurses and security guards sleeping away, i felt dirty as a used rag and weak and fragile as an old vintage document. I attempted to get up only to realize that my bag of drips was too far away to reach, i felt helpless but called out to a nurse and the proceeded to slowly prod towards the washroom for the first time in hours. My time at the hospital was frustrating to say the least, i stayed for 2 weeks whilst being treated for closed angle glaucoma with eye drops. No surgeon or consultant wanted to go in my eye because they couldnt determine what exactly i had hence they loosely treated the glaucoma. I was discharged and sent home with a costly preccription of drops and diamox. After a week or so at home with no progress, my right eye started reddening like the red sea and my head pains restarted ( not again right??? !!!!), i decided not to go back to the hospital so i went to a private corneal specialist the very next morning. I sat in the waiting room with my headache, not as severe as the first time but still not comfortable, when he finally saw me, he checked my iop and it had gone back to 44, he gave me another diamox immediately and sent me to a glaucoma specialist. Enter the specialist that diagnosed me with ICE, as i walked in she checked my iop again, and gave me a combination of drops that brought my iop down to 31. This doctor put me on a schedule for 2 weeks to see if my iop would go down, whilst doing different tests on my eye and telling me about the herpes simplex link. She ultimately told me that i NEEDED surgery on my right eye, and my shunt was placed in my eye. The surgery was successful and the recovery went well. After the surgery a year ago, ive had numerous check ups and she explained that my endothelial cells were 'misbehaving' and i would need a corneal transplant and i would also have the risk of a cataract. Ive grown accustomed to the downfalls of this disease so i wasnt shocked anymore to hear this. My family decided that i should visit the U.S. for a 2nd opinion ( i live in the Caribbean btw). I flew to Miami on September 6th 2013 and spent 2 weeks in Florida. I've read most of the posts here and realized that what i was told in Miami hadnt been mentioned here. So after contacting numerous eye specialists in Florida, i decided to visit Basco Palmer eye institute. I was told to come in and they would look at me, putting this into perspective, i am the only person on my island of 1.4 million ppl with this condition, no hospitals had any cases of it and my surgeon had only seen 3 cases in her time in the U.K. Back to Miami, as this is a research centre, every resident eye doctor wanted a piece of me like a prized fighting bull. I arrived there at 7 am and had been seen by at least 6 resident doctors in between very expensive tests that i had to foot because of. no insurance, ive spent almost 20,000 USD on my eye in this span. At about 4pm that day, the eye specialist at Basco Palmer was finally ready for me. He basically explained what i knew before coming to the states and he said that ICE is extremely rare and he'd seen a handful of people with it. He examined my shunt and said it was perfectly inserted and checked my corneal thickness which he said was very thick due to the condition. The specialist also told me to apply sodium chloride to the eye in the morning to help with the cloudiness. He also said that a partial DSEK procedure can be done to solve the corneal issue which was music to my ears but he didnt advise surgery right away though. The consultancy was very expensive though, cost me 1500 USD just for that one day, but at least i found out about the DSEK procedure so im guessing you guys can check it out to see if it helps. Im sorry for my long write up, but ive never had anyone to talk to about it, so i just wanted to help everyone suffering with ICE with the info ive gained. Nigel.
    Anonymous 5 Replies
    • November 19, 2013
    • 05:58 AM
    • 0
    Flag this Response
  • HI I LIVE IN GLASGOW U.K ...I WAS DIAGNOSED WITH ICE AUG 2012 I HAVE HAD LAZER SURGERY TWICE WHICH DIDNT WORK AND JULY 2014 HAD A THREE HOUR OP TO PUT A VALVE A TUBE AND A SMALL PLATE IN MY EYE, THEY ALSO HAD TO PUT AN OTHER LENS IN, NOT ALL GREAT BUT SIGHT NOT ANY WORSE... STILL HAVE VERY BLUR VISSION IN MY LEFT EYE, GET HEADACHES ALL THE TIME AND VERY SENSITIVE TO LIGHT, BECAME ALERGIC TO THE DROPS I WAS ON AND NOW TRYING OTHER DROPS, MY CORNEA IS DAMAGED AS WELL, MY SPECIALIST SAID ITS A TIME BOMB AND WILL NEED A TRANSPLANT, I HAVE WORKED ALL MY LIFE, MOSTLY IN POST OFFICE BUT DONT KNOW HOW MUCH LONGER I WILL BEABLE TO DO SO AS ALL DAY ON COMPUTOR IS HEADACHE BECAUSE OF THE BLUR VISSION AS WELL AS THE LIGHTS
    Anonymous 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.