Do I have normal tension glaucoma or not? 28 years old, scared.

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Hello, I was followed by an ophthalmologist for about 2 years as glaucoma suspect. I am 28, male, very near sighted (-9.00). I always have a "normal" eye pressure, ranges from 12-17. Three years ago I was doing the routine eye exam and the doctor told me I had some vision field loss as well as damaged optic nerve in my right eye (by OCT). However, it appeared never progressing in the last 2 years so he told me it was probably congenital defects. Recently I started to feel weird in my right eye and seemed to lose a little bit more vision field, optic nerve no change (confirmed by OCT). So I am on glaucoma drops now (Bimatoprost 0.01%). However, the doctor is still telling me it is possibly congenital defect, not glaucoma.

Dose anyone have similar situation before??? How can I prevent being bind before 60 years old...I am so scared and searched a lot of youtube videos on how to live if you are blind...  

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  • Posted

    Hi. I had the same issues as yourself. They tried for years to control my glaucoma with drops but the pressure wouldn't go down and it was starting to damage my optic nerve and I was losing field vision. It felt like my vision in that eye was continually misty and cloudy and the pressure build up gave me terrible migraines. I am much older than you - 51 years young!! My surgeon wasn't happy with my pressures not coming down (23) so in July he decided to perform a Trabeculectomy. It won't improve my vision but it will preserve the vision I have left. I was very scared before the procedure that things could go wrong and I lose my sight completely. But 3 months on I feel it's one of the best things I've ever had done and would not hesitate to have my other eye done - which may be the case very soon!

    My mother started with glaucoma then macular degeneration and now at 92 she is blind. I have seen how it has affected her and I will do what it takes to keep my eyesight for as long as I can. Good luck with everything. Always here if you need to talk x

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    • Posted

      When I was first diagnosed with glaucoma my pressure was 15 which was classed as borderline. They started treating it with drops but over the years the pressure increased and they gave me the maximum drops possible but the pressure wouldn't come down and it was starting to damage my optic nerve.

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    • Posted

      Hi, can you advise how many drops you were on and what your pressure was when they decided to do the trabeculecromy please? Also did they consider doing a clear lens extraction? Thanks
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    • Posted

      Hi Samantha. My pressure was 23 when they decided to do the trabeculectomy. This operation was the only thing suitable for me. I trusted my surgeon completely and went along with his decision. I was using Azarga eye drops twice a day and latanoprost eye drops before bed. Now I dont have to use any drops at all I my operated eye. Hope this helps!
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    • Posted

      Thanks. I use:

      pilocarpine 3x day

      alphagan p 3x day

      azarga 2x day

      travatan 1x day

      restasis for dry eyes and couple of inflammation drops 3x day

      ive had a clear lens extraction in one eye (my worst eye) but then have an ocular odema which is not responding to additional drops.

      my pressure is 14-22 

      i refuse the op in the other eye but it doesn’t need it yet.

      always wonder if a trab may help.

      pleased you have yours under control.

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    • Posted

      I must admit I had reservations before the trab and to be honest I was scared that it could go wrong and I would lise the sight completely. But 3 months on I can honestly say it's one if the best things I've ever had done - also glad I opted for a general anaesthetic rather than a local as I know the local in itself can cause after problems.

      I would have no qualms if and when my other eye needs doing. Good luck. Keep in touch

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    • Posted

      Pleased to hear all went well. I’ve not yet been offered the trab but it’s the only thing left for me now. I agree a general is much better for you. Thanks 
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  • Posted

    Same to you hunny. Hope it all goes well for you and make sure you get your eyes checked regularly to catch any problems straight away. Take care.
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  • Posted

    I, too, have Normal Tension Glaucoma;  unfortunately damage to my optic nerve already happened when it was "discovered" even though I went to eye drs religiously. I was told since I had lasik surgery on very near-sighted eyes, it "masked" and made my pressures lower than they really were and that the pressure readings I was getting weren't accurate because I have thin corneas.  I finally got a self-tonometer (Reichert 7CR) which gives readings like the Goldman readings in eye dr's offices and "true" readings taken into account thin corneas.  My pressures range from 9-16.   After my "glaucoma specialist" in Florida told me he would have to do a trab and that I wouldn't emotionally be able to handle it, I found another eye dr. who wants to do Cypass with Micropulse since it is minimally invasive, my pressures don't have to be lowered a lot, even though Cypass is only FDA approved for mild to moderate glaucoma, not advanced.   I shared all this on another eye forum called FitEyes where many members take their own pressure readings with either the Reichert or the Icare.  The top Glaucoma Specialist in the world (1/3 of his patients have NTG), Dr. Robert Ritch, saw my posts and said before I even cut my eye in surgery he said he would see me in NY.   What an eye opener (no pun intended);  Normal Tension Glaucoma isn't all about the pressure;   he ran tests on seeing if I was getting enough blood to my capillaries (i.e. blood to the small capillaries near my optic nerve)...sure enough, after a 24 hr. heart monitoring session, my blood pressure dips to as low as 85/58 when I sleep.   Also, I had Sleep Apnea and might not be getting enough oxygen to my eyes and have started using a CPAP.  I was told to sleep on a 20 degree wedge pillow to keep my head elevated when sleeping.  There are many articles online about how vascular irregularities can continue to worsen glaucoma even after surgery.   Also, many supplements were given to me to help:   

    GLAUCO-HEALTH (prescribed by Dr. Ritch glaucoma specialist in NY)  for Glaucoma

    alpha lipoic acid   100 mg

    NAC (N-acetylocysteine)

    Cognizin (Premium Citicoline)

    Co-enzyme Q10 - Kaneka Ubiquinone

    Ginkgo biloba extract, 

    Grape seed extract 95% polyphenols

    N-acetyl-cysteine,

    Curcumin, (Norflo Curcumin-phosphatidycholine complex)

    Green Tea Extract

     AND

    Omega3 Fish Oil 1300 mg 

    Eyebright  1000 mg 

    Bilberry Fruit Extract 1000 mg, 

    Lutein 20mg  (taken by itself;  not with other vitamins)

    Pycnogenol 100 mg  (pine bark extract for circulation, eyes, etc.)

    Asxanthin 4 mg for glaucoma

    ResveraGrape - whole grape extract 500mg for glaucoma

    Black Currant Extract   200 mg for glaucoma

    Hawthorne Extract    80 mg      supports blood to heart muscle (blood pressure dips at night to 84/53 

    Licorice Root 500 mg  sporadically for fixing low pressure

    Natural Beta Carotene Vitamin A 10,000 IU (eye health )

    Ashwagandha Standardized Extract 500 mg blood health

    I am seeing an acupuncurist to see about stimulating blood circulation to my eyes.

    My only concern about surgery is that my pressures may be to low (hypotony);   yet, I am scared (I am 62 - was diagnosed when 57, probably had it years before then, but went undetected) ;   it seems that Normal Tension Glaucoma isn't always cured with pressure lowering surgery.  If the optic nerve still isn't getting enough blood and oxygen, progression will still get worse.  By the way, I only take Zioptan (preservative free Latanoprost) at night.....all other drops I had reactions to...the preservatives in them cause severe dry eye for me and can cause ocular surface damage (which many drs don't even tell you....)   Good luck to all, hope this info helps someone out there.    If anyone has had the Cypass procedure (it's been used in Canada for the past 2 years and was just approved by the FDA in the U.S. this past April).  please post it here and let us know how that went.

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    • Posted

      Really appreciate your information! It is very interesting since I do have anemia so there maybe inadequate oxygen supply to my eyes. The list of supplements you have is very complex and attractive. Do you all of them on a daily base? That seems quite expensive to me...I bought some Ginkgo extract and bilberry fruit extract and take multi-vitamin on a daily base...I really hope this can help! Based on your opinion, I will talk to my doctor and see if I can get a heart monitor. So the 24h session really tells you about the blood flow to eyes?
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    • Posted

      HI Shawn,  be sure you take LUTEIN....very important.  And take it without other supplements when you take it.   It is expensive I guess all these herbs.  It's all I seem to spend money on now anyway.    I just started acupuncture which is also supposed to help stimulate blood flow to the eyes.  The 24 hr. blood halter monitor which you wear while you sleep will show if your blood pressure "dips" at night.  Research it...some dipping is normal; if it's 20%-30% less than usual that can be a factor in the progression of the disease.  It doesn't tell you about how much blood flow goes to the optic nerve..google nocturnal dipping glaucoma, Flammers Syndrome and also Sleep Apnea Glaucoma....Happy to help.  We all need each other's experiences to figure out how to beat this thing.  Best, Susan

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    • Posted

      Dear Susan, 

      Thanks for your suggestion, I started to take Lutein, omega-3, curcumin, vitamin B12, as well as ginkgo. These are the things that have real scientific support. I will definitely consider Dr. Ritch 's recipe for other supplements. Right now the most important thing to me is figure out if I have systematic blood pressure problems and sleep apnea. Unfortunately, I live in Indiana and the ophthalmologists here have pretty tight schedule. I couldn't get in until next month to ask for the 24h cardiovascular monitor.

       

      BTW, what eye drops you are using now?

      All the best,

      Shawn

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    • Posted

      Susan, please ignore my previous question, I just read that you only take Zipotan at night. I researched Dr. Robert Ritch's theory about NTG and I found several of his publications, which exactly described my vision field loss...So I believe everything he said and I will take my nocturnal blood pressure ASAP. 

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