| Welcome to GlaucoMates! Here you
can learn more about others who attend the chat as well as
visitors to our website. You can click on a type of glaucoma
to find other glaucomates with that particular type of glaucoma
or you can click on a name to find out more about someone
you may have met in the chat room or on Bionic Eye message
board. We are always building our GlaucoMate section to better
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Angle-closure and Plateau Iris Syndrome
ICE syndrome
Inflammatory glaucoma
Traumatic glaucoma
Pigmentary glaucoma
Advanced glaucoma
Normal-tension glaucoma
Primary open-angle glaucoma
Secondary glaucoma
Glaucoma suspect (Ocular
hypertension, suspicious nerves or fields)
Pediatric glaucoma (Congenital,
Infantile, Juvenile, Sturge-Weber, Aniridia, Axenfeld-Rieger,
Peter's Anomaly)
Amanda
(AU)
Born: January 1963
Residence: Esperance, Australia
Glaucoma Type: Closed angle
Age diagnosed: 46
Glaucoma History: Developed glaucoma after
taking aspartame lozenges?
Personal: Mother of 3 children aged 13,
11 and 9. Disbelief but now a determination to find a cure,
there must be something.
Hobbies: gardening, planting trees, beaching
and of course the internet.
Last update: July 8, 2008 |
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Bobbie
Born: August 1954
Residence: Irving, Texas
Glaucoma Type: Narrow angle
Age diagnosed: 48
Glaucoma History: Went to my general practitioner in May 2003 after headaches around my left eye that gave me cloudy vision & rainbow halos. I thought it was migraines or sinus. Was shocked to find out it was glaucoma. Pressure in right eye was 45 & left was 23. Had laser procedure in right eye the next day. My right eye never gave me any symptoms. Had an acute angle closer attack in the left eye before the laser hole had been made big enough & pressure was 55. Have had 3 laser procedures in left eye & 2 in right. Take Alphagan-P three times a day. Am trying to understand & come to terms with all of this.
Personal: I have worked at the local phone company 25 years. Married 28 years.
Last update: July 12, 2003 |
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Cheyenne
Born: August 1956
Residence: Laurel, Maryland
Glaucoma Type: Angle-closure glaucoma
Age diagnosed: 45
Glaucoma History: I was diagnosed with glaucoma March 2002. There is no family history of this.
Career: Writer
Personal: I am a 45 yr. old, African American woman. I have 2 children and 4 grandchildren. I am a writer. I love outdoors in any weather. Music and writing (of course) are my passions. I possess a wonderful sense of humor... I am looking forward to communicating with any one that can lend me some support and encouragement. I hope to be a bright spot in someones day also.
Hobbies: My hobbies are writing, recording and listening to "our generation" music and sharing it with my grandchildren.(that are amazed at how the record spins). I also enjoy making people happy, that truly makes my day to know that someone got a hardy laugh by something that I have said.
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DebHoop
Born: October 1961
Residence: Rhode Island
Glaucoma Type: Acute angle-closure glaucoma
Age diagnosed: 35
Glaucoma History: Acute onset after surgery in abdomen. Was misdiagnosed for a week as a migraine. Pressures went up to 60. Had two laser procedures and had my left eye remove due to a blind painful eye. Presently ubdergoing nerve destruction procedure in left eye due to nerve damage caused by the glaucoma. Very scared and alone. I have not met anyone who had lost their eye to glaucoma. I am very devasted by this loss.
Career: Diasbled medical secretary
Personal: Born premature and have ROP and I am legally blind. I was a medical secretary at a low vision agency for three years. I have been married for 19 years and have two children, Laura 17 and Steve 16. (Feb 2003)
Hobbies: Reading, walking and music. I am interested in the broadcasting industry but don't know how to get started.
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Elizabeth
Born: 1970
Residence: Massachusetts
Glaucoma Type: Pigmentary
Age diagnosed: 42
Glaucoma History: I was diagnosed 5 months ago, very sad. I am not African American, overweight, male, or any other "type" that would get glacoma. I had an iridotomy in both eyes ... will find out how I am in 5 months, if the pressure is better. By the way, eye doctors always took my pressure, and it was always normal. The only way they found out I had glacoma was because I had some eye problems(vitreous detachment).
Career: Airline Representative
Personal: I am worried and scared about my glacoma, but, the doctor says that everything looks good...I hope so.
Hobbies: Traveling, reading, gardening.
Last update: October 16, 2005 |
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Ellmay
Born: 1970
Residence: Boston, MA
Glaucoma Type: Narrow-angle
Age diagnosed: 45
Glaucoma History: My Dad had glaucoma and was legally blind. I was diagnosed 1 year ago and had laser surgery. Since then I had a major flare up where the pressure was 61 & 31. They managed to get that down and now I am doing the drops 3 times a day. I have constantly got irritated eyes and am hoping that I can get a handle on things by talking to other people with the disease.
Career: Real Estate
Personal: Married with 2 kids 19 & 16. I live in the Boston area. I work in real estate.
Last update: October 1, 2003 |
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heyma
Born: October 1949
Residence: Emmett, Idaho
Glaucoma Type: Acute angle-closure
Age diagnosed: 52
Glaucoma History: I woke up one morning in terrible pain. I had had my pressures checked three weeks before at my checkup, and everything was normal. I thought the pain/discomfort I was experiencing was the adjustment period for my new prescription.
The pressure in my right eye was up to 76. Drops did not work to lower the pressure so laser surgery was done. The next morning the pressure was back up over 70, so surgery was done. Four days later laser surgery was done on my left eye, the pressure was 34.
My grandmother had glaucoma, but I do not know anyone else in my family who did. The eye doctor was encouraging my sister to have her eyes check immediately because of the high likelihood it could happen to her too.
I seem to be recovering well. I have had a bout of conjunctivitis in the left eye, kept putting in those great drops, not realizing that I was having an allergic reaction to them which continued to get worse. The new drops seem to have the left eye under control. I was told to expect cataract surgery "sooner, rather than later". But that my vision would probably be significantly better then.
I've only been at this since 6/9/02 and I'm trying to learn as much as I can.
I am not as frightened as I was earlier, and I am so grateful for the relatively good vision I have now.
Career: Pharmacy Technician
Personal: I am a 52 year old woman, two grown kids, no grandchildren. I was widowed 4 years ago (1998), and I resent that no one is here to help me as I had cared for my husband during his journey with cancer. My children live out of state, and it's scary to wake up and need to get to the doctor immediately, but not to be able to drive the 30 miles. I have some life-style changes to make, don't I?
Hobbies: I am a reader. How frustrating to sit in this house full of books, and only be able to read a few pages at a time. Gardening has been very good for me. I don't need to focus so well, and if I can't see the weeds, they don't bother me! |
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Jan
Born: March 1948
Residence: New Zealand
Glaucoma Type: Acute angle closure
Age diagnosed: 49
Glaucoma History: Have had 2 moleno drains in left eye inserted..several
lazer surgeries no family history or medical problems. Cataract now over
L eye no sight. Eye very painful. Have never communicated with anyone
with glaucoma
Personal: 58 yrs married, 2 children, 1 grand child, love
dogs animals people cooking shared foos good times and company.
Hobbies: Obviously need more on line practice.
Last Update: July 2, 2007
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Jeanie
Residence: Hatfield, PA
Glaucoma Type: Pigmentary
Age diagnosed: 35
Glaucoma History: Have been successfully treated
by Wills Eye trained ophthalmologists for the duration of
my illness. 10 years post iridotomy and trabeculoplasty.
My very best experience medically has been with Dr. Katz.
We have tried various medications and very carefully track
the IOP's and visual fields. I am now using Timoptic Gel
in the AM and Lumigan PM. IOP's are typically 15 - 18 mmHg.
Personal: Electrical engineer with extensive
academic training in counseling and experimental psychology,
have recently undergone GRS and facial reconstruction surgery.
Hobbies: Formula 1, motorcycles, art, music,
cooking, reading, electronics, spending time with my girl
friends.
Last Update: November 29, 2007 |
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John
Born: April 1960
Residence: Santa Maria, CA
Glaucoma Type: Plateau iris syndrome
Age diagnosed: 36
Glaucoma History: Diagnosed five years ago, took them a year to determine what type of glaucoma I had. I am currently on three types of drops and have had three laser procedures as of October 2001.
Career: Operations Manager
Personal: 41 year old male with 2 boys ages 18 and 15, married for 21 years. (10/2001)
Hobbies: Harley Davidson motorcycles
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Joy
Born: December 1950
Residence: Deland, Florida
Glaucoma Type: Angle-closure glaucoma
Age diagnosed: 52
Glaucoma History: I first noticed a halo in my right eye when driving at night. I lost most of the vision in the eye which put me in the emergency room at 1 am. I had a severe headache and nausea. It took 10 hours of brain scans, etc. before they realized my IOP pressure was 72. Had laser in right eye and one week later in left eye. I did loose some vision in that eye. Pressure now is 18 in both eyes. I use the Proview daily for peace of mind between doctor visits.
Career: Student
Personal: Moved to Florida from Indiana in 1972. Was married 10 years the first time, 18 the second. I have been divorced for 3 years. No kids. I am taking care of my mother to keep her out of the nursing home as long as possible. I am going to school trying to bet my life back together. I thank God everyday that I can still see.
Hobbies: I love dancing, (ballroom, country, latin,)I have done competition(teach some too), biking, hiking, animals, computers.
Last update: July 25, 2003 |
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Julie
(Jewel)
Born: September 1939
Residence: NJ
Glaucoma
Type: Narrow angle
Age diagnosed: 54
Glaucoma
History: Surgery for narrow angle at Wills, pressure of 70.
Nerve damage, dilated pupil, narrow field of vision, good vision, very
sensitive eye.
Career: Retired teacher |
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KEN (Karen
N.)
Born: February 1959
Residence: White Rock, Canada
Glaucoma
Type: Narrow angle glaucoma
Age diagnosed: 41
Glaucoma
History: Had no knowledge of having NAG prior to age 41.
Had five eye attacks of closed angle glaucoma back in September 2000 and
was given laser eye surgery to correct the angle. Have had eye pains ever
since and eye sight has changed alot. Hard time driving at night &
lights bother my eyes and I cannot see far away anymore. My ophthalmologist
who did the surgery said I was her youngest patient ever. Her next oldest
patient is 65 years old.
Career: Computer Support Senior Tech
Personal: I am an active 41 year old
single mom of a 17 year old and this disease has slowed me down alot. A
Eurocapital is still working on my case currently as to why I had
so much eye pain but cannot associate it with anything so far.
Hobbies: Reading, watching my son
skateboard in contests,surfing the net |
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Lil Engine
Born: July 1943
Residence: Guilford, CT
Glaucoma Type: Angle-closure
Age diagnosed: 59
Glaucoma History: Yearly eye exams did not pick up my glaucoma although I reported symtoms of blurred vison, rings around lights and headaches. in March,2003, I could not read the "E" on the chart. Sent to a glaucoma specialist at the Yale Eye Center in New Haven, CT. The diagnosis is angle closure glaucoma. Laser surgery performed (left eye) the first day of my visit for elevated presure in the 30's. Told I would need the same in the right eye soon. Laser in the left failed and within 48 hours had an acute attack followed by a trabeculectomy. That procedure has failed due to the formation of scar tissue. Several laser procedures to reduce pressue, not working. Many drops as well. Severe reaction to timolol. Right eye laser may,2003 due to rising pressure in the good eye. Seems to have reduced the pressure just fine. Have narrow angle in that eye now. Soon, will be needing a second trabeculectomy in left eye and cataract surgery with an implant. My big worry is headaches and
nausea, especially during the night. I am afraid to sleep for fear of an acute attack again. Permanent vison loss in left eye due to years of untreated and elevated pressure not picked up during routine visits. Panic attacks during office visits. Very humiliated by my behaviors. Want to overcome!
Career: Social worker
Personal: Live with my retired husband, an attorney. Still actively work for the state of connecticut as a social worker. Love people and helping. Have three children and three grandchildren. They are my life and my joy. Like to write, collect antique dolls and garden. Like driving,too, but am not good at it anymore. Have had three accidnets in the last few months, all on the right side! Car looks great on the left. Am good at encouraging others and would like to share that gift.
Last update: June 9, 2003 |
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Lulu
Residence: Abington
Birth: April 1974
Glaucoma Type: Narrow-angle
Age diagnosed: 34
Glaucoma History: When
I was expecting my second child, the OB suggested I see
an ophthalmologist due to my chronic hypertension. While
the blood pressure hadn't caused any problems with my eyes,
the doctor discovered glaucoma suspect. He wanted a second
opinion from a specialist at Wills Eye. She exclaimed, "buy
that guy a bottle of wine" when she looked at my eyes.
That was followed by, "give him more than a bottle
of wine!" I already have scarring in my left eye and
am awaiting a phone call to schedule laser iridotomy in
both eyes.
Hobbies: Movies, movies, movies! I also
enjoy knitting, meditation and Starbucks.
Personal: I'm a stay-at-home-mom
of two beautiful and very young children. Before having
kids, I worked for the Alzheimer's Association running the
helpline and a program called Safe Return. And before that,
I was a professional artist.
Last Update: November 13, 2008 |
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JoCarmen
Born: August 1927
Residence: Pittsburgh, PA
Glaucoma Type: Closed angle
Age diagnosed: 55
Glaucoma History: Diagnosed high-normal (18-20)AT 50 years old. Treatment: Follow-ups and field vision tests about every six months. Laser surgery at 70. At 74 years old treatments started with Timolol Maleate (Gel Forming): single drop in each eye twice a day. After six months Alphagan was added and treatment changed to Timolol once in each eye in AM and Alphagan opnce in each eye twice a day. Aftr 8 months, became allergic to Alphagan and was switched to Trusopt: once in each eye, twice a day in addition to the Timolol. Last visit toDoctor reading was at 18 with medications.
Career: Retired
Hobbies: Gardening, reading, surfing the internet - I am an information freak!
Last update: March 4, 2004 |
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Mamma
Born: June
1961
Residence: Ontario
Glaucoma
Type: Acute-angle
Age diagnosed: 36
Glaucoma
History: My mother had an attack of acute angle glaucoma in
both eyes in her mid thirties. I was misdiagnosed at my hospital and as a
result have suffered severe vision damage. I received laser treatment in
both eyes four days after diagnosis. There have been no problems with the
right eye, however I am on three different drops for my left and now there
is talk of surgery to relieve the pressure.
Career: Domestic Engineer
Personal: I am
a fourty year old legally blind mother of a teenage daughter. I have
retinitus pigmentosa (RP) as well as glaucoma and am very used to being
poked and proded by the medical profession. My family is one of the
largest carriers of RP and we have been seen by too many doctors to count
since we were small children. Hopefully they're study of us will benefit
others with similar problems.
Hobbies: My hobbies include fishing,
swimming, cooking,boating, recording movies and best of all, reading.
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Marie-Claude
Born: August 1959
Residence: Montreal
Glaucoma Type: Plateau Iris
Glaucoma History: Went for a routine chek-up a year ago at optometrist who told me I had narrow-angle. Never had an attack - thank god! - but started at this point to have those daily migraines that only goes away after a cocktail of tylenol extra-strenght and sleep. I was diagnose with Plateau iris after ubm last september and had iridotomy on both eyes and taking pilo twice a day. I still have difficulties accepting it, even if I know I was really lucky to be diagnosed before any attack and to be treated in order to prevent it. Never the less, I am afraid of the side effects of the medication and other treatments and lookin to find, if any, answers and support
Career: Financial services
Hobbies: Ski patroller (as volunteer) on week-ends,
scuba diving and bicycling in the summer.
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Marilyn
Born: July 1954
Residence: Ontario Canada
Glaucoma Type: Plateau-iris
Age diagnosed: 47
Glaucoma History: Just diagnosed last week with Plateau Iris and know very little about it. I was told 2 years ago that my eye pressure was up and I should come back once a year to have it checked. Now I have been put on Pilosophize 3 times a day. Was told that laser surgery does not generally work on this type of Glaucoma. I will see the specialist again next week but was wondering if anyone can tell what the general prognosis is.
Career: Financial Services
Personal: Mother of two grown children and two grandchildren. Enjoy travelling.
Hobbies: Working out, swimming, cycling. |
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NoFun
(Norm)
Born: January 1953
Residence: Utah
Glaucoma
Type: Narrow-angle (due to tiny eyes)
Age
diagnosed: 46
Glaucoma History: In December 1999 my
vision went cloudy and for the most part left me blind. Misdiagnosed as a
eye infection, it was 2 days before a eye doctor diagnosed acute angle
closure glaucoma. IOP of 67 in both eyes. I have been on many drops and
had several lasers and finally the lenses in my eyes removed to relieve
the pressure. It is way too long of a story to tell here.
Career: Looking busy
Personal: Married to the perfect wife.
We have 2 adult boys, both married and living out of state.
Hobbies: Computers, photography,
music, playing guitar, and traveling. |
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ps 114 (Juan
T.)
Born: July 1966
Residence: Prescott Michigan
Glaucoma
Type: Acute glaucoma
Age diagnosed: 19
Glaucoma
History: I was diagnosed at the age of 19 with acute
glaucoma beyond repair, suffering from headaches 3-4 times per week along
with nauseating pain. I've been on bioptic eye drops for the last 10 years
that never brought my pressure under control, now the pressure is at 72 in
the right eye and I am scheduled for nucleation surgery in March 2001. At
this time I will be getting a new eye. The only thing I look forward to is
no pain, no headaches and no nauseousness. So they say any how, I am a
born again Christian who believes in heeling powers of the holy ghost and
I am committed to prayer for all glaucoma patients.
Career: Restaurant Management
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Rhonda
Residence: Australia
Birth: April 1960
Glaucoma Type: Angle closure
Age diagnosed: 42
Glaucoma History: Diagnosed
with Closed Angle Glaucoma in 2002.I experienced slight blurred vision
several times before I had a bad headache and blurred vision associated
with a 'gritty' feeling in my eye. I went to my local doctor the next
morning as I had severe pain during the night; she diagnoised me as having
a migraine. That evening, the pain was so severe I thought I had a brain
tumour. Went back to Doctors first thing in the morning whereby they took
one look at me at put me in an ambulance and off to hospital. Closed Angle
Glaucoma was diagnosed and my specialised did a laser into my left eye
to reduce the pressure. Between 2002 and September 2008 I have been on
eye drops and tablets; most recently 6 x pilocarpine 4%; xalatan and cosopt,
along with 2 x Diamox a day to try and keep the pressure down. Unfortunatley
these have failed and I had an operation four days ago to open the angle
behind my eye. This was pretty scary and I am still in a lot of pain.
Stitches were removed yesterday and it is now the weekend. My doctor told
me to massage the bleb every hour to assist the flow of fluid. I am worried
that I am not doing this correctly, and am contemplating ringing him for
some reassurance. At present vision is very poor although I have been
told this will improve over the next three to four months. I am also hopeful
that I will be on as low as 2 drops a day to control my pressure. I am
married with three children; the youngest is 16; the eldest are sons aged
20 and 23 and they both live and work away from home.
Personal: Hobbies Little Athletics (I am our State President), reading, water skiing,football
(spectator at my sons' games
Last Update: October 18, 2008
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Saja
Born: July 1953
Residence: New Jersey
Glaucoma Type: Closed-angle glaucoma
Age diagnosed: 41
Glaucoma History: Diagnosed in 1995, had laser surgery, then a trab in 1996. Have not responded to the various drops over the years - have had 6 laser surgeries since 95, along with 4 "needling" procedures. Had second trab in Aug. 2002, and will be scheduling shunt surgery within next few weeks. Pressures have been as high as the 60s. I have lost about 80% of vision in my left eye.
Career: Financial Sales Manager
Personal: I live with my "significant other" and our dog -Sam. We have no children, but are "aunt and uncle" to every child we know!!
We both have careers that take up much of our time, but we look forward to our time together. Both my parents are deceased, and I am not even sure if anyone in my family had glaucoma.
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sarnge
Born: January 1965
Residence: Hastings, England
Glaucoma Type: plateau iris/angle closure
Age diagnosed: 38
Glaucoma History: My mum had emergency trabeculectomies
when she was 27, she had had pain for years but was mis-diagnosed
with migraines eventually during an extremely bad attack a
specialist in Germany (where we were at the time) recognized
what it was and operated, unfortunately she suffered allot
of damage. I was told I needed routine checks, which I did
for a bit but when I got to 30 I thought it had missed me.
Went for routine checkup at opticians, when I was 38, found
high pressures sent me up to the hospital. specialist did
iridectomies both eyes and was on pilocarpine 4%.. this didn't
reduce pressures, diagnosed then with plateau iris so iridoplasty
done on both eyes. The first one was ok but it didn't work
so he did it again, very painful the second time i felt my
iris move as soon as he started. Put on xalatan and things
seemed to settle but about 6 months later pressures up again
so added in timodol (I found this made me really tired) anyway
fine for couple of months then up again so drops changed to
pilocarpine 1% with bimatoprost. Same again settled for a
bit then I had an acute attack (thought i was having a brain
hemorrhage. it was awful) specialist then decided that it
is so unstable that he would do trabeculectomy. Had right
eye done 1/11/06 and left will be done in 8 weeks. Bit achy
and blurred vision but not too bad, I cant wait to get back
to some form of normality (if that is possible!)
Career: pharmacy technician
Personal: two children 5 and 14, both girls,
divorced
Hobbies: reading, stoolball, boxercise,
walking
Last update: November 12, 2006 |
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Shades
Born: November 1956
Residence: Illinois
Glaucoma Type: Closed-angle / plateau iris ???
Age diagnosed: 39
Glaucoma History: In 1995 I began having severe bouts of headaches and nausea every few months or so. Hospitalized twice for dehydration due to excessive vomiting; misdiagnosed as having migraines. When I noticed halos I began researching on my own. Symptoms of halos, headaches, eye pain, nausea and vomiting indicated glaucoma so I saw an plateau. IOP was in the 50s in the left eye. Had an iridotomy (l996) but pressure wasn't lowered enough. Sent to a glaucoma specialist in St. Louis. Over the next year and a half I went through the eye drop meds, laser zaps in attempt to push the iris back into place, trabelectomy and then a vitrectomy due to aqueous misdirection. Finally, the lens in the left eye was removed and I believe I had another vitrectomy at that time as well. Most of my visits to St. Louis were emergencies of pain and extreme nausea/vomiting (due to spiking IOP?) so don't remember much. End result is left eye has a permanently dilated pupil since the iris is stuck. No meds. Bleb closed so I wear contacts in both eyes. Eyes are light sensitive; sunglasses are a must. Everything has been fine for about four years. Just recently I began having that "headache/nausea" thing again and don't know if it's the left eye acting up again or the right eye starting to go. Either way, I am quite jittery of going thru those horrendous attacks. And, of course, every time I go in for a pressure check, the pressure is fine. I really dislike going in as an emergency, writhing in pain and nausea, before anything is done.
Career: Special education teacher
Personal: Married with two teenagers, a daughter a freshman in college and a son a sophomore in high school. All are very supportive and helpful, especially when I lose a contact, which is often.
Hobbies: Reading, movies, families and friends.
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Sher
Residence: Indiana
Glaucoma Type: Narrow angle/plateau iris
syndrome
Age diagnosed: 44
Glaucoma History: I had a narrow angle attack
in rt. eye,apparently triggered by allergy med. Received good
reports after P.I.'s in each eye. A few months later rt. eye
again had an attack. Another (unsuccessful) P.I. resulted
in plateau iris syndrome diagnosis and referral to glaucoma
specialist who performed a gonioplasty...lasted about 5 mos.
Lens pressure resulted in another attack/damage/gonioplasty.
6 weeks later another attack due to previous damage and pressure
build-up resulted in a new open angle diagnosis in rt eye
and move to eye drops (6 laser surgeries over 12 mos span).
There is some damage to rt eye, but vision remains good and
I am very thankful.
Career: Teacher
Personal: I've been married 22 years and
have 2 sons. My husband and children have been very supportive
during the difficulties this past year.
I am a Christian and God has used this new challenge to teach
me several things. I am enjoying the "quiet" moments
and hoping to avoid new eye "surprises" for a while.
Hobbies: scrapbooking,
reading, gardening
Last update: December 28, 2005
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Sue I
Born: August 1952
Residence: Powder Springs, Ga.
Glaucoma
Type: Acute-angle-closure
Age diagnosed: 49
Glaucoma
History: Diagnosed August 2001, and am in the process of
looking for a specialist, for a second opinion, and was told that laser
surgery may correct the problem.
Career: Computer Data
Conversion/part-time makeup artist
Personal: I have been a runner for 25
years, recently taken up gardening, have spent 15 years in property
management, and moved to Atlanta six years ago from Cape Cod, spend my
free time with family back home and friends, here.
Hobbies: Running, reading, pottery,
shell creations, raising cockatiels, gardening (new to me but love it)
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Toodles
Born: September 1951
Residence: Houston TX
Glaucoma Type: Narrow angle glaucoma
Age diagnosed: 55
Glaucoma History: I suddenly experience flashing lights and
halos at night followed by headaches. Went to my opthamologist who I had
been seeing for 9 yrs said he suspect glaucoma. Got two second opinion.
final diagnosis narrow angle glaucoma. Did laser surgery in both eyes.
Lost a lot of peripheral vision. Takes 5 different drops. Pressure still
high, need to do trabeculectomy. Very scared.
Personal: Lab technologist
Hobbies: Travelling, dancing and cooking.
Last Update: August 9, 2007
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Victoria
Born: July 1958
Residence: New York
Glaucoma Type: Narrow-angle
Age diagnosed: 44
Glaucoma History: My older sister has also been diagnosed,. appears to run in our family.
Career: Teacher
Personal: I teach for a living and have two beautiful children that keep me very busy and of course I always worry if my eye sight will last me to their weddings!
Hobbies: I love to read and hang out at book stores.
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Vivian
aka Moderator Viv
Born: October 1961
Residence: Bucks County, PA
Glaucoma Type: Aqueous Misdirection Syndrome
Age diagnosed: 29
Glaucoma History: In my right eye I have had a trab,
lens implant and a pars planta vitrectomy in December 98.
I have had many lasers in my right eye as well, too many
to count. I get episcleritis flare-ups from time to
time, they are very painful. In 1994 I had lasers and trab
in left eye. After both trabs I went into aqueous misdirection.
In April 2004 I underwent surgery to have my right eye lid
lifted. Last glaucoma check, March 10, 2005 my right eye
pressure was 15, the left was 37. They tried medications
to bring the pressure down but the pressure did not come
down low enough and my front chamber was still closed. I
was sent to a retina surgeon. The next day I underwent a
vitrectomy and lensectomy at Wills. My chamber is nice and
deep. I had my new lens implanted on May 4, 2005 and so
far, so good. I am off the dilating drop and can see better
then I have in over ten years. On June 1, 2005 I picked
up my new glasses and am adjusted to progressive lenses.
So far, so good. January 2008, still no drops, no optic
nerve damage. Last check pressures hovering around 20.
Career: Webmaster, Healthcare Informatics consulting,
former CT technologist
Personal: I have a very old Poodle and
a crazy Chihuahua. Member of
the World
Glaucoma Patient Association's (WGPA) Executive
Board.
Hobbies: Golf, computers, quoits.
Last update: January 28, 2008
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ICE syndrome
Cath
Born: December 1949
Residence: Oakland CA
Glaucoma Type: Secondary glaucoma - result of Cogan Reese Syndrome
Age diagnosed:
Glaucoma History: I was diagnosed with Cogan Reese Syndrome - that causes glaucoma as a secondary characteristic of the disease process. My iris is deteriorating, my cornea is showing signs of disease. I am told I will need repeated surgeries for this disease and am trying to figure out how I am going to do this, and still keep my job. In February 2002 I underwent a trab with Mitimycin C and shots of 5fu. Pressure and vision stable for the moment.
Career: Non-profit housing
Personal: I am a 51 year old single woman, who has worked in the field of non-profit affordable housing my whole life. This eye problem has me completely bewildered as it appears I will be out of work repeatedly over the next couple of years and can't figure it all out.
Hobbies: I have a Standard Poodle Henry, who is with me almost always. I am part of a land collective over the past 25 years and have built my own cabin on a 160 acre parcel of land in rural Mendocino county in northern California, and spend lots of time there. I love to play racquetball and hike, read and cook.
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CindyLu
Born: November 1957
Residence: Wisconsin
Glaucoma Type: Chandlers Syndrome
Age diagnosed: 45
Glaucoma History: Diagnosed 3 weeks ago with Chandlers after
seeing halo's on my way to work in the morning. Pressure was found to be 38 and had emergency laser surgery to decrease pressure and next week saw Glaucoma Specialist and was diagnosed with Chandlers. Having drainage tube placement soon (March 2003). My pupil is displaced but no pain, no dizziness, don't have alot of known symptoms except the increased eye pressure and the pupil. Synechea are seen, guess I'm in for a ride. Just don't know much about it yet, but I'm sure I will learn as I go along.
Career: Registered Nurse
Personal: 45 yer old single mother with grown child. My companion's name is Echo and she is a pitbull-dalmation mix. I work full time as a medical/surgical nurse and have worked at the same place for 22 years. Am currently building my dream home of a log cabin in the country.
Hobbies: My love is the internet and going for long walks with my dog. I enjoy gardening and eating chocolate. I love to be outdoors when the weather is appropriate. |
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Duffer
Born: September 1958
Residence: Florence, Montana
Glaucoma Type: Chandler's Syndrome
Age diagnosed: 38
Glaucoma History: Noticed a drop in my pupil and had it checked. Diagnosed as Chandlers Syndrome. Pressure is remaining steady pupil is slowly enlarging and iris deteriorating.
Career: Real estate/ Ranching/Riding
Personal: Married, 5 horses, 2 dogs, 3 cats. On a ranch in Montana - transplanted from California. Work in real estate, show hunter/jumpers, golf, fly fish.
Last update: October 28, 2003 |
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Fiona
Born: August 1962
Residence: Wellington, NZ
Glaucoma Type: Cogan Reese Syndrome (ICE)
Age diagnosed: 40
Glaucoma History: Felt like I had something in my eye, after a few days went for an eye test and had a IOP reading of 30 in my left eye. I went to a specialist who diagnosed wrong, then when I lost most of my vision I went straight to the hospital. They got my pressure down and several weeks later was diagnosed with ICE Syndrome. Have had a trabeculectomy in my left eye and the pressure is at 9. Vision is not what it used to be but it is not to bad. No family history of glaucoma.
Career: Caregiver
Personal: I am a single mother of two boys, 19 yrs and 13 yrs. (2002)
Hobbies: Hunting, fishing, tropical fish.
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Hassed
Born: November 1962
Residence: Kansas City
Glaucoma Type: ICE
Age diagnosed: 38
Glaucoma History: Optometrist noticed
odd-shaped pupil & high pressure (30) in right eye in
late 2000. Opthalmologist identified as ICE in January 2001.
Various cocktails of meds controlled pressure until late
2003. Had trab surgery November 2003. Within 2 weeks, had
incredible pain behind right eye and right side of face.
Pressure was around 40+ and probably had peaked at 60. Emergency
needling to trab was done to relieve pressure. After going
through another pain session a second time a few short weeks
later, decision made to have Ahmed shunt implant in February
2004. With use of Cosopt, pressure has remained normal.
Cataract has developed in right eye and will have cataract
surgery soon. My left eye is healthy...just near-sighted...and
I am so thankful for that healthy eye!
Career: Stay at home Mom
Personal: Married with 5 year old son.
I have BA/MBA Degrees and worked in high tech sales for
14 years. After adopting our awesome son, I became a stay-at-home
mom and love it!
Hobbies: Sports...either watching or
playing soccer, baseball or basketball with my 5 year old
son. Love to watch college basketball too. Other interests
include antiquing, decorating...and trying to excercise
on a regular basis!
Last Update: May 11,
2005 |
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Hilly
Born: July 1974
Residence: Ireland
Glaucoma Type: ICE
Age diagnosed: 26
Glaucoma History: No family history
Personal: I
was diagnosed with Normal Tension Glaucoma over six years
ago. As a result I was on numerous medications but the pressure
kept climbing. I had two trabs ... pressure was ok for about
6 months after the second one and then it went up again.
I was never really happy with my doctor. He never answered
my questions properly and then at the end of it all said
he couldnt do anything else for me and advised me to go
and see someone else. I did and found a wonderful doctor
who listens and explains everything to me ... He then said
that I didnt have normal tension glaucoma that I had the
ICE syndrome and explained it all and that it was only in
the one eye (sometimes I worry that I will get it in my
other eye even though he says I wont). Anyway I had my third
trab a year and a half ago. Had a few problems after the
op but eventually worked itself out and was enjoying a normal
life. Until a few weeks before I was getting married I went
to see him and the pressure had worked up again to 23 but
the bleb still functioning. Anyway went off and got married
and went back to see him today and its gone up more to 26
so I\'m facing some shots of mitomycin and hopefully that
will enable the bleb to start draining again. I would love
to here from other ICE people and hear how they are getting
on. Feel free to email me
Hobbies: Running, sailing and traveling
...
Last update: November 5, 2005
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Hye
Born: September 1937
Residence: Las Vegas, NV
Glaucoma Type: ICE Syndrome
Age diagnosed: 65
Glaucoma History: Blurred vision in left eye for 7 years after cataract surgery. Finally diagnosed just last year w/ICE. Gluacoma pressure up to 30,tried various drops, when doctor added cosopt, changed to trusopt along w/zalatan, alphgan caused irregular heart rate increase.
Career: Retired
Personal: Worked in the casino business here in Las Vegas for many years, then went into real estate. Now retired. I have a comforable life with a great man, many friends, and a wonderful family.
Hobbies: Competitive distance runner & swimmer. I weight train, & pracitice yoga. I am a 66 year old jock. Also send alot of time with my 3 grandkids whom I adore.
Last update: April 9, 2004 |
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ICEsyndrome (Sherri)
Born: September 1955
Email: sheanderson@yahoo.com
Residence: California, USA
Glaucoma Type: Irido Corneal Endothelium
(ICE) Syndrome
Age diagnosed: 30's
Glaucoma History: Pupil changed at age
28-29; Glaucoma became present around age 38; 5/96 first
Ahmed Valve inserted; 11/96 second Ahmed Valve inserted;
5/97 first Ahmed Valve replaced; 9/97 inserted Baerveldt
implant inserted; 12/99 cataract surgery; 3/2002 cornea
transplant and trimming of two of the three tubes. Volunteered
for layoff for best results on my eye. This affects right
eye only. The valves alone did not work. I met a doctor
on-line who suggested in addition to the medication drops
I was using with the valves/implant, to apply message/pressure
to the eye. I did and the pressure has been controlled every
since. That's my story and I'm very interested in anyone
else's story with ICE Syndrome. There is not many of us
around.
Career: Aerospace - UNIX
Personal: Female, married and living in
Southern California. One daughter, no history of glaucoma
in family.
Hobbies: Walking, swimming, yard work,
cycling, cooking, skiing when my depth perception allows
it. |
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lacool
Born: October 1962
Residence: Simi Valley
Glaucoma Type: Ice syndrome, Chandlers
Yahoo ID: grredbeachjeep
Age diagnosed: 42
Glaucoma History: My pupil moved in 1997, I could see fine then. My right eye was very foggy. I went to specialist who said I could get a corneal transplant.
Career: Computers
Personal: Single, blondish hair, blue eyes
Hobbies: Snow skiing, body surfing, music, good food.
Last update: December 15, 2004 |
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janicey_72
Born: February 1972
Residence: Santa Barbara, CA
Glaucoma Type: ICE syndrome
Age diagnosed: 33
Glaucoma History: After five months of doctors not being sure why I had elevated pressure, I was diagnosed with ICE syndrome in May 2005 at Jules Stein Institute. Rainbow halos and cloudy vision were my symptoms. Most of my stress came from doctors that were slow to diagnose, or made jokes about it. I have not had any changes in the visual appearance of my eye yet. IOP was ranging from 22-32. I was on Betimol, Alphagan, and Xalatan, but pressure was still around 27-29. Alphagan left me exhausted. Found a great new dr. that performed a trab. I was surprised by how much the surgery knocked me out for about 6 weeks, and how bad my eye looked after the surgery, but my eye has been recovering nicely. Pressure has stayed low, was around 6 for four months, and now is at 10. Finding a dr. that listened and was knowledgeable was more than half the battle! Still no change in my pupil or iris, but I was on atropine after the surgery, and my pupil took a very long time to come down in size. Now six months later it is just slightly larger than the normal eye. My vision was pretty bad after the surgery, but at 5 months was back to 20/20 (still slightly blurry from time to time, I\'m guessing from slight pressure changes). Two great grandparents had glaucoma. No other family history of anything like this. Feel free to email me!
Hobbies: Walking, shopping, beach, movies, golf, hiking, biking, travel
Personal: I grew up on the east coast
and moved to CA for a job in 2001. Fell in love w/the west
coast and decided to stay. Just last year fell in love w/a
great man who lived in the midwest, but moved to CA to be
with me.
Email: janicey_72@yahoo.com
Career: Marketing
Last update: July 29, 2005
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JarvisK
(Yahoo Instant Messenger)
Born: January 1953
Residence: North Carolina
Glaucoma Type: ICE - Chandlers Syndrome
Age diagnosed: 49
Glaucoma History: I started feeling like something
was in my eye and it hurt really bad. I had not idea what
it was, it would feel better later in the day. That went on
for a week, because I was on vacation in Naples, Florida.
When I got home, I went to an eye doctor and he said I had
dry eye, gave me drops to use. It was still bad, I went to
another doctor and he said the same thing. I then went to
a specialist who called in another specialist and they together
said I had ICE disease. I have had cataract surgery and am
now looking at having a corneal transplant sometime in the
next few months.
Career: Banking/Loan Officer
Personal: I am a 52 year old female. Married
for 33 years with one son who is 26, married and lives in
Naples, Florida. I have been with the same bank for 30 years
where I am a loan officer. I have four cats and absolutely
love animals. My glass is always half full and I love life.
Hobbies: My husband and I love to travel,
cruise, fly, whatever. We go to Naples alot to visit our son
and his wife. We love Christian music and going to Christian
concerts. We work with the elderly in nursing homes and also
troubled teens in a juvinile delinquent school near us. My
husband is disabled due to diabetes (he was with the same
company for 30 years also before becoming sick). I am concerned
about losing my vision and being able to keep my job,insurance,
etc. Thankfully, I have this in only one eye (left).
Last update: January 6, 2006 |
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Jo
Born: January 1970
Residence: Maryland
Glaucoma Type: ICE and narrow angle
Age diagnosed: 35
Glaucoma History: I was diagnosed with
glaucoma three years ago and have been on quite the roller
coaster ride ever since. I have had numerous surgeries in
an attempt to control my pressures as well as maintain my
sight; pressures sky rocketing as high as 70 at times. I
am currently awaiting my second corneal transplant....and
holding my own in regards to the pressures.
Career: Licensed Massage Therapist and
Mommy
Hobbies: Spending
time with my twin daughters, exercising, biking, reading
and laughing.
Personal: I am kind of waiting to see
where this journey of mine takes me.....it has definitely
been a long/eventful few years. I figure it can only get
better from here.
"Settle for nothing less than magnificence in your
life. Your emotions fuel your energy, and your energy fuels
your future."
Last update: January 28, 2008 |
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Kay36
Born: December 1969
Glaucoma Type: ICE Syndrome
Age diagnosed: 35
Glaucoma History: I noticed my pupil was
irregular at age 33. Was misdiagnosed as Adie's pupil. Correctly
diagosed at age 35 as ICE syndrome. This has deteriorated
quickly over the past year. I had emergency trab surgery
in February 2006 after pressure of 48 uncontrolled with
glaucoma drops. Ended up with hypotony for a few weeks with
lowest pressure of 2. I had a few good weeks and now just
went threw another high pressure of 42. I'm back on the
glaucoma drops, massage, predforte, and acular. The trab
might need needling if this doesn't resolve on it's own.
I only have this in my right eye and my vision is 20/25
in that eye. My other eye is great 20/15.
My trabeculectomy in my right eye done
in Febuary 2006 failed and I had shunt surgery at the end
of June. It has been 2 weeks since the surgery and things
seem to be going much better from the start with this surgery
compared with the trab. My IOP was 11 at last check and
I don't have to use glaucoma meds so far. I'm hopeful that
this will buy my eye some good time athough my doctor told
me that my case of ICE is a very aggressive one and seems
to be changing fast. I am so lucky to have a fabulous doctor
who I have complete confidence in. I think that help relieve
a lot of stress in this situation. I'm keeping my fingers
crossed and thanking God for every day I can see to do what
I need/want to do in life and for my healthy left eye!
Career: Stay at home mom
Personal: 36 year old stay-at-home mom
of three kids.
Hobbies: I love sewing, reading, spending
time with my kids.
Last update: April 5, 2006 |
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Michael
W
Residence: Bay City, MI
Birth: October 1938
Glaucoma Type: Chandlers Syndrome ICE
Age diagnosed: 30
Glaucoma History: Was
1st told eye pain was due to stress. Finally diagnosed as
glaucoma. Examined at Univ. of Mich. Hospital and end result
was Chandlers Syndrome. Prescribed Alphagan, Co-Sopt, Xalatan,
Pilocarpine, etc and pressure ranged from 18-40. Been treating
with three different specialists and finally consulted a
glaucoma specialist, very young and knowledgable last week
and surgery is being scheduled soon. Pressure is 40 and
optic nerve is 0. Laser treatment was preformed to no avail.
Vision(L eye) is the diseased eye and sight is about 3%.The
eye is gone and surgery will prolong the pain for 3-5 years.
Cost of medications is a factor. Apprx $200-$300 per month
which is very sad. I also have a cataract on the left eye
that they were afraid to remove.
Hobbies: Currently,
I coach a local high school's crew/rowing team. I am a professional
ice skating instructor. I am also a crewman/environmental
instructor for two local schooners, Appledore IV and Appledore
V. I have a young Labradoodle that keeps me busy and I enjoy
inline and ice skating and I am a very ardent sculler and
own my own 26 foot long Schoenbrod shell.
Personal: Retired from
Gen. Motors in 1992 and presently working for a local high
school as a hall monitor.
Last Update: March 12, 2008 |
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mcgif001
Born: April 1957
Residence: Durham, N.C.
Glaucoma Type: Chandler's Syndrome
Age diagnosed: 40
Glaucoma History: Started seeing halo in right
eye, immediately on medication to control pressure,this
did not work. Doctor tried bleb but could not control pressure
differences. Finally seen by Duke Eye Center after infection
entered anterior chamber, Glaucoma and Cornea services rebuilt
my eye and daily eye drops maintain my current pressure.
Very long road of treatment, I am seeing 20/40 in my right
eye.
Personal: Currently I am a full time student
and working at Duke Hospital near the Eye Center as a nurses
aide. My plans are to earn a nursing degree. I am married
with two teenage daughters, and have lots of support since
I have gone back to school.
Hobbies: I use to be very active with Wintergreen
Ski Patrol, but school leaves me little free time to do
much of anything else.
Last Update: November 23, 2007 |
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Mom22
Born: December 1958
Residence: Allentown, PA
Glaucoma Type: Chandlers Syndrome
Age diagnosed: 46
Glaucoma History: High IOP\'s detected at routine
eye exam -21 left eye/24 right eye. Luckily referred directly
to glaucoma specialist - tried xalatan for one month and
pressures went up to 24 left/31 right! Switched to betimol
and after one month pressures are 19 left/24 right - everything
looks good so far - no optic nerve damage, eye sight unchanged,
visual field good. Hoping for the best but very scared!
Future is unknown - just told that I very possibly have
chandlers syndrome - what is this? How does this change
my outlook? Any comments/help would be much appreciated!
Career: Stay at Home Mom (Chauffeur)
Personal:Married 14 years, two great girls - both
early teens (HELP!!) - home with girls since they were born.
Hobbies: Skiing, walking, reading, archery,
watching many sporting events every week (soccer, lacrosse,
track, etc.)
Last Update: April 22, 2005 |
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LuAnn
Born: October 1958
Residence: Waco, TX
Glaucoma Type: Secondary to ICE syndrome
Age diagnosed: 32
Glaucoma History: Blurred vision in right eye at age 32. Dx with ICE. Had Moltino implants in '91. Corneal transplant in '98, but is rejecting. IOP from 22-49. Good days, bad days. Taking Betagan and Pred.
Career: Veterinarian
Personal: Divorced. One son with no ocular problems. No history of familial traits.
Hobbies: Water sports, softball, basketball, motorcycling. |
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| Manday
Born: December 1959
Residence: Bournemouth, UK
Glaucoma Type: ICE Syndrome
Age diagnosed: 42
Glaucoma History: I recently had a lens
fitted to stop the pain and it seems to be working. I take
three lots of eye drops a day. I have lost the sight in
my left eye but my right eye is ok.
Career: Teaching Assistant
Personal: I take timoptol maleate for pressure,
Minims chloramphenicol and a lubricant.
Hobbies: I am married with 2 children aged 16
and 21. I like gardening and my husband and I like eating
out and going on holiday.
Last Update: March 10, 2005 |
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Mei
Born: June 1956
Residence: Everett, WA
Glaucoma Type: ICE Syndrome
Age diagnosed: 45
Glaucoma History: ICE diagnosed in 2001. Medications
controlled IOP till November 2002, then had trab in 2002.
My left left eye has been checked by Dr. Philip Chen at
UW (awesome MD!. I am so thankful he did my surgery but
ICE is progressive disease and I don't know when the filters
around my eyes will be all blocked.
Career: Pharmacist
Personal: Worked as a pharmacist for 25 years!
Mainly I am worried what to do if I lose my eye sight. I
wonder I need to find a second career. Any ideas?
Hobbies: Love to sing. When I feel overwhelmed
with the thought of losing eye sight, I listen to opera
and classical music and sing away the depressive thougts.
Last Update: November 17, 2005 |
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MustangMomma
Born: March 1955
Residence: Nashville, TN
Glaucoma Type: Secondary to I.C.E.
Age diagnosed: 46
Glaucoma History: My son noticed that my
eye looked like a cats eye in Aug of 2000. After months &
countless trips to the Vandy Eye Clinic the doctor told me
I had I.C.E. I think he knew very little about my problem.
I went on-line and found lots of info and refered myself to
the National Eye Institute. I meet and was educated by a Dr.
Kupfer. While in Maryland I was also told I had Cystoid Macular
Edema. This was not noticed by the doctor I had been seeing.
When I came back to Tennessee I was put on several types of
eye drops. By Dec. 2000 I was told I now had glaucoma. My
pressure was checked weekly for 3 or so months, each week
it continued to rise. When the pressure got to 40 and I was
in lots of pain emergency surgery was done at 2:00am in March
of 2001 to bring the pressure down. I had a Ahmed shunt inplanted.
I had a new Doctor that was great. The problem from the shunt
implant was double vision. I was put on several new drops.
The drops caused cataracts. My pressure remained stable until
July 2003. My pressure went back up and I had to have another
surgery to remove scar tissue from around the shunt. After
the shunt scaring was removed the cataract got really bad.
In Jan 2004 the cataracts were removed. The surgery caused
the corneal to cloud and the pressure to rise. Drops took
care of the pressure but I was told the clouded corneal would
need a transplant. I was told I could not get a corneal transplant
until the glaucoma shunt was moved. To move the ahmed shunt
I must have the vitreous gel removed first. My shunt for the
glaucoma will be moved May 12, 2004. If the pressure then
is stable I get a corneal transplant in Sept. 2004. I wished
I had better info in 2000. If you have glaucoma and you have
the slightest possible chance that you might need a corneal
transplant, ask... no..demand your glaucoma doctor puts the
shunt threw the gel so you can by pass extra surgery, because
with each surgery the risk for higher pressure is present.
Personal: I am a 49 year old white female
that has been married almost 31 years with 2 children born
in 1976 and 1977. I have no other medical promblems. I am
as healthy as a horse.
Hobbies: My favorite pass time is reading
Stephen King books. My second pass time is cat fishing. I
love to ski and play slow pitch softball.
Last update: May 1, 2004 |
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| Ted
Born: April
Residence: San Jose, CA
Glaucoma Type: Possible Chandlers
Age diagnosed: 44
Glaucoma History: I used to wear contact
lenses daily for about 7 years. Then one day, I developed
an eye infection. My doctor was not sure if was a bacterial
or viral infection. I do not think it was a viral infection
because I did not have any lesions around my eye. My doctor
gave me Tobarex for my left eye, and two days later I developed
corneal edema in my eye. I went to an eye specialist and
they told me to stop using Tobarex. I week later the corneal
edema went away. I did not use contact lenses for two months.
Once I started using my contact lenses the corneal edema
come back. I now wake up with corneal edema every morning.
I use Muro 128% 5 drops to keep the corneal edema in check.
It works somewhat - but my eye sees clearly by the afternoon.
I have visited 4 cornea specialist in San Jose/Palo Alto.
One specialist told me that I have Chandler Syndrome and
it requires a cornea transplant. This certianly scared me.
The other specialists told me that I do not require such
a cornea transplant at this time. I do have 20/20 with my
bad eye. I have now had cornea edema for two years - and
it has not gotten worse. I | |
