Glaucoma "suspect" @ 36

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Completely new to this world, unfortunately. Was referred to an opthalmologist after an eye exam that revealed an eye pressure of 25 in both eyes, as well as, a right eye that looked "mildly suspicious for glaucoma." After seeing an opthalmologist I've been diagnosed an open angle glaucoma suspect with borderline features. I go back for a visual field test in a few weeks. I'm sick to my stomach with fear. I feel so overwhelmed with fear of going blind due to my young age. Has anyone been in this position that can offer any guidance? I have a lot of life left to live and fear I won't be seeing it.

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  • Posted

    My first eye test at the age of 48 revealed pressures of about 27 in each eye.    I then went to St. Thomas's hospital London where they said they would keep me under observation.    I went every 6 to 9 months for a check up and it was not until the pressures rose to 30 that they started the drops.   That was 7 years after the high pressure was found.    All that is now 27 years ago.   I am still on eyedrops, but can still see OK and am now 73.    I worried a lot about it at first, but eventually, it receded from my mind.    They have found your pressure early, so will be better prepared to deal with it.   

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    • Posted

      Thank you for your response. Its so hard to distinguish from all these websites that have me going blind to being OK. Hearing from real people helps. I hope that I can be as lucky as you and stay safe but off of treatment until I absolutely have to be. I'm still hoping this all may be my "normal" but perhaps that's wishful thinking. I hope that one day it can recede my mind as it eventually did yours.

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    • Posted

      Alcantara, one more question. When you say you can see OK now does that mean you've had little to no changes? If so, did you ever have changes/damage to your cup to disc ratio/ optic nerve?

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    • Posted

      Kelly,

      They say there has never been any damage to the optic nerves.   In fact the first consultant that I saw said that some people could go for years with pressures up round 30 and never take any harm, whilst others could get glaucoma with normal pressure.     For the first seven years when they didn't put me on drops or any other medication, it varied between 20 and 27 in both eyes.    I don't know much about cup/disc ratios, but they said they were OK.   They also said my cornea thickness is normal.    My right eye is so good that I can still read without glasses, although it is easier with glasses.    My left eye, at the moment has something called Central Serous Retinopathy that is a small amount of liquid getting under the retina and forming a bubble.   This causes a small amount of distortion close-up, where straight lines appear wavy, but at distance, it is not really noticable.    The cause of this (CSR) is generally unknown, but the good news is, that it normally clears up on its own without any medical intervention.   As I have had it before, several times over the past 30 years, it will no doubt clear up again.    I built the attached model a few weeks ago, despite the CSR.   It is completly hand built and not from a kit.   The rigging is all of fine wire, so you will appreciate that I can see just fine, despite everything.    As I said, I am now 73.     They also told me that I had early cataracts about ten years ago, but I can't say that I have noticed anything hapenning yet.    I started taking Lutein vitamin supplements some time ago, as it is said to be good for the eyes.   This was not suggested by any doctor, or medical consultant.   I did mention it to various consultants, and they all agreed that it was beneficial.     Hope this helps -

      Alcantara 

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  • Posted

    I Was in your position at age 30.  I am now 77 with very minor optic nerve damage in left eye. What you describe is so  familiar and terrifying I can easily relive that time as I write this.   I was lucky to have good medical care, good doctors and was totally compliant with instructions.  I never missed a drop.  Plus I was lucky in having an early diagnosis although that doesn't sound so lucky does it. I believe there is nothing one can do to help the condition except the above.  I don't believe there is any effective treatment outside the mainstream medical model.  Getting pressure checked and hearing numbers is stressful and it seemed to overwhelm me as it is you.  I eventually found peace with it. If I can answer any questions I am available. I wish you well. Marion

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    • Posted

      Thank you, Marion. Your response gives me hope that I have a good chance to be a "lucky" one too. Although, I'm still hoping and praying that maybe, just maybe, this all may be"normal" for me. Regardless, I'm still trying to have my first child and did not expect this in a million years! I have so many fears running through my head it's almost paralyzing! Were you diagnosed as a "suspect" initially or were you started on drops right away? I'm home to avoid any medication, if I can, initially but will do whatever they ask of me!

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    • Posted

      Kelly, I was initially diagnosed as a suspect at age 30 and given one prescription at that time.  A few years later I had the glaucoma diagnosis.  I am in the USA.  To have that diagnosis requires elevated pressure, slight peripheral vision loss and optic nerve damage.  Guidelines in various countries differ I believe for diagnosis. My pressure had risen prior to that diagnosis and a second eye drop prescribed and monitored more often.  I have been on two prescriptions since that glaucoma diagnosis. One thing I can say with certainty is to be careful using any steroid drug whether in the eye itself or given by mouth. I had to use a steroid drug when I had cataract surgery and it was carefully monitored and addressed.  It seems a short duration of steroid is not prohibited.  You can be mindful of that as steroids are widely used. Best wishes. Marion
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    • Posted

      No steroid use of any kind here. That's a bit frustrating as I thought maybe starting drops early might prevent any changes, therefore, prevent a glaucoma DX. I'm hoping my visual field test is good, which the doc believes it will be and that I can prevent any vision loss and further changes to my optic nerve. I was hoping early treatment would keep me safe but I guess that's not always the way it goes. Thanks again. Its a scary time for me.

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    • Posted

      Kelly, each patient is different. I think while I was a suspect I didn't meet the criteria for the dx at that time. There is perhaps a pressure number now that is required for the diagnosis.  I would avoid any website that you leave thinking you will go blind.  It may be helpful to communicate with patients that have had successful treatment over a long period of time  It helped me to learn the facts including statistics while remembering we are all different and will have different outcomes. I do know that not all suspects are dx with glaucoma.  Actually, some people are told they have nerve damage by an ophthalmologist and they don't have high pressure.  You might look at the Glaucoma Foundation website (USA).  There is much good information out there.  And some not so good.  Look for good medical sources (ophthalmologists including researchers) and not a layman's opinion. Marion

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    • Posted

      Thanks, again. At my formal Opthalmologist visit my pressure has decreased slightly to 21 and 20. I have thick corneas so supposedly that accounts for higher pressure. My cup to disc ratio was .55 and .5 which is slightly bigger than average but they are unsure as to whether this could be "normal" for me. The big determiner will be the VFT in a few weeks along with regular check-ups after that, I'm assuming. My doctor said she is not worried about me passing the VFT as she feels confident I have not lost any vision. So I'll cross my fingers and keep you updated. Its so hard to find any info out there for young people, hence, what makes my fear of blindness escalate. More years, more time to deteriorate. Ugh!

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  • Posted

    Hi Kelly,

    I too am a 36 yo female.  during a routine eye exam I was told my pressures were high.  22 and 25.  Scary!  I followed up with an ophthalmologist and was told I have thin corneas, high pressures and slight narrowing of my right optic nerve.  I'm so scared,  I follow up tomorrow to have a visual field test.  I know how you feel.  I am filled with anxiety

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    • Posted

      Was just checking back in on this board and noticed you had posted? How did everything go for you on your visual field test? Mine ended up going well and the doctor doesn't need to see me back for a year (which will be in September). I honestly don't even think about it anymore but know I probably will come September. Hope all is well.

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