Thank you and a couple of questions

[charles555]

Dear fellow suffers, if I may call you that.

Thank you all of you for giving me your thoughts on my previous post.

To add to the person who quoted Shakespeare’s ‘’flesh is heir to’’ ailments, then my contribution is a quote from an American writer whose name I forgot, ‘’old age and ailments make me feel like I have been punished for the crime I didn’t commit’’ although this is not exactly how I feel.

I forgive myself growing old like anybody, of course, but it is more difficult to forgive myself to leaving it late to be treated. The first booklet I read about glaucoma said ‘’fortunately, if spotted early, it could be treated effectively’’ which sank my heart.

I have learned that this is a hereditary disease but I feel guilty about having this and I would like to apologise to my parents.

It would be much easier to reconcile yourself to the reality if you can show the fruits of your life’s achievements, be it your family, your wealth, status and so on. Me, no. Just me and ailments.

On the bright side, I have an eye doctor who is kind and has time for me and a MRI brain scan arranged for me. Im sure I don’t have any brain damage and be cleared, but it doesn’t alter the reality about my glaucoma one bit, it is still stupid me and my weak optic nerve

And yet, as some of you wrote to me, there are many for whom ailments come in the form of terminal cancers including non-smoker’s lung cancer and non drinker’s liver disease, and many diseases don’t do age discrimination ie you don’t need to be even middle age to be terminally ill and told you have a few months to live. It is a consolation that my glaucoma, NTG, is not one of ‘’aggressive type’’ of glaucoma, using Glaucoma UK booklet’s word, that needs operation or risk losing sight in a few days.

Lastly I have a few questions: how many of you were recommended to have a MRI? I think my ocular pressure is unusually low, at 13, to have a severe glaucoma and it has made my doctor to suspect other factors, that’s my guess, although the doctor says this is a routine but is it?

He asked me if I suffer from low blood pressure, from migraine, from dizziness, and strangely, if I see ‘’halos’’ and my answers were NO to all except I often find low angle sunshine to my eyes too bright and glaring. My blood pressure is 134 and was told this is normal. Those questions made me wonder how unusual my glaucoma is.

He also wants me to have a blood test to examine if I have a dietary problem. Im less convinced of this. All I know about glaucoma and diet is that too much caffeine put ocular pressure up and too much alcohol would damage your optic nerve. I eat normal, I don’t take too much sugar, Im not too overweight and not alcoholic. Is it normal to have a blood test for glaucoma?

[Jennymary]

As you may know I was born with glaucoma and I'm not medically qualified but I would say 13 is a really good pressure, I can't comment or advise on your other issues

[balacakkhu]

Dear charles555,I am one of the fellow suffers... like you normal pressure glaucoma but with field of vision loss in one eye. The early diagnosis of glaucoma is difficult like normal tension glaucoma unless the field of vision is loss. My glaucoma was diagnosed at routine eye test at the optician where the vision field test was done and found out there was defect in one eye. The vision field test was quite new at that time. Now this is part of the routine eye test at the opticians. I was referred to the eye clinic as emergency for ? glaucoma even the pressure were within the normal limits but with visual field loss.

The eye doctor arranged the MRI scan for me because one of the causes of vision field defect is pituitary gland tumour. The tumour can press on the optic nerve and cause vision field loss. I think this is the reason you have had this MRI scan.

About blood pressure - I also have 24 hour monitoring even my BP are normal limits to make sure the pressure does not drop nor high which can effect on the circulation of the eyes and optic nerves.

About blood test - same as blood pressure the anaemia can cause the circulation problem to the eyes.

About daily life and diet - I would say please keep balance.

Therefore glaucoma awareness is very important because the early diagnosis is very difficult. It is also the long journey.

"Old age is suffering"

All the best for your glaucoma management and your health.

[Tillybo]

Like balacakkhu and you I have normal pressure glaucoma. It was diagnosed nearly 20 years ago now and while I cannot remember questions about diet etc I did have an MRI scan. There is no history of glaucoma in my family and as the pressure is normal they said it was atypical glaucoma. I think that flagged up the need for a scan to rule out anything sinister which might be causing the problem. My glaucoma was also spotted by the optician during a routine eye test, fortunately in the early stages . Since then I have had a trabeculectomy in each eye. I am monitored regularly at the hospital and fortunately there has been no serious deterioration in my sight. Good luck.

[Bluella in reply to Tillybo]

Hi Tillybo - thank you for sharing your story. I find these posts very informative and helpful, you learn something new every day. But I have a question - I thought trabeculectomy was carried out in order to relieve high IOP? So I wonder what was your doctor's reasoning behind you having to undergo this procedure when you had normal intraoccular pressures? And well done for persevering for 20 years with this condition and not deterioration in your sight! Keep it that way.

[Tillybo in reply to Bluella]

For my right eye as there was damage already the decision was to lower the pressure further with the trab and to monitor regularly. Ten years later they noticed that damage was starting in the left eye and so that was immediately operated on. Pressures checked at least twice a year (even during the pandemic) and so far so good. IOP an be as low as 12 or as high as 17 and no further damage shown with the visual field test.

[Bluella in reply to Tillybo]

Thank you, Tillybo, that explains it. It sounds like you have had good care and support from your doctor. I am glad that your vision has been preserved. All the best!

[Stairs10]

Hi

It's great that they're being so thorough and arranging all these investigations.

Even though it's a bit worrying while you're going through it, at least it'll help to check you're getting the most appropriate treatment.

I wish you all the best.

[valfrance]

Hi charles555, i have open angled glaucoma diagnosed in January. I asked my doctor for an mri as none of my family have glaucoma. I wanted my sinuses checked as i always have a stuffed up nose and I wanted to make sure that my sinuses were not giving me high pressure. they were fine. If i had your doctor I would be happy he is doing all these tests, as we know pressure is all they can go on as a guideline, however everyone is different and some people get no damage with high pressure and some people get damage with low pressure. Acceptance is the most difficult thing for all of us. We just have to keep on trying to protect the macular with our lifestyles of lowering our stress levels, food, natural supplements and exercise and basically hope for the best. Some medications can raise our pressures I don't know about low pressure. take care valfrance

[Eahldt]

My history is almost identical to that of Tillybo. Referred by my optician after field test concerns. Eye pressure not significantly high but a weak optic nerve detected in my right eye. MRI ruled out any other cause than glaucoma. Sight loss in right eye so a trabeculectomy was carried out. Recently some sight loss was detected in my left eye so I had another trabeculectomy. There is no history of glaucoma in my family.

[rhys1234]

How old are you ?

Don't forget Bette Davis's dictum [ ? was it her or the other one ? ] ' Old age ain't for Cissies ! ' Lol.

And yes, things could be worse. I recently attended a funeral of someone who was a picture of well maintained health : ( svelte, v light drinker , worked on buildings outdoors etc etc, healthy life style, and lovely man ) . He woke up a few months ago with severe pain in stomach ~no warning. Turned out to be pancreatic cancer. He was 50 !