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Living With Glaucoma

My name is Mikiko and I have been living with Congenital Glaucoma for over 55 years.

I was born in the 1950s and already blind in my left eye; but my right eye seemed to be unaffected by glaucoma. My left eye was cloudy and large and by all accounts from my mother I suffered extreme headaches which often caused me to bang my head against the wall. I was unable to have surgery until fourteen months of age, as the surgical instruments had to come from America so I could be operated on. My Doctor tried to repair the abnormal system and create some drainage for the eye, which did relieve some of the pressure but couldn’t fix the loss of vision.

I was prescribed general eye drops which I continued to take until the age of fourteen when I was diagnosed with glaucoma in my right eye. This was devastating. Glaucoma had not been detected in any of my family and it was still a mystery as to how and why I suffered from congenital glaucoma. I began the use of glaucoma drops in the right eye to control the pressure and continued along until 1985 when my left eye once again began to turn inwards and multiple ‘squint’ surgeries followed over the next eighteen years.

My right eye had been ‘behaving’ itself well until 1988 when I suddenly suffered blinding headaches, dizziness and nausea. I was treated urgently, however the pressure continued to rise very quickly. I had emergency trabeculectomy surgery and was treated with many drops. I was extremely lucky to keep my vision and after three months I was able to resume my ‘normal’ life.

In 1990 I once again experienced blinding headaches, high pressures, dizziness and nausea. I underwent another right trabeculectomy, including having 5-FU injections every day for many weeks which proved to be a great success, even though it was one of the most difficult times in my life.

In 1991 my left eye had a pressure of around 60 mmHg and started to cause severe headaches. I had a left trabeculectomy but this did not relieve my headaches and in 1998 I decided to have a left eye enucleation and ptosis surgery followed. Following many months, I have a wonderful prosthetic eye and no pain.

In the past few years I have had other treatments, including cataract surgery on the right eye and recently on my left I had a pyogenic granuloma removed. My right eye is stable and doing well with no eye drops.

I would like to thank Glaucoma forum for giving so much information to all those with Glaucoma. I was able to contact the Australian & New Zealand Registry of Advanced Glaucoma and have genetic testing, along with my mother and sister who had also developed glaucoma: the results showing that my sister and I both carry two of the ‘glaucoma genes’. I have two beautiful daughters who currently don’t show signs of glaucoma; they are of course regularly tested. I am a strong advocate of regular eye testing.

I have had a very long journey, but with strength, perseverance, expertise and the knowledge of those around me, plus amazing family support I have been able to enjoy life and participate in many activities. With continued technological advances I hope to be able to see for the remaining years of my life.

Living with Glaucoma has made me strong and independent. There are difficult times but life is what you make of it and for me that is to take control of “My Glaucoma”, to deal with it when and if it misbehaves. I trust my story brings hope to others. https://forum.typeonenation.org

 

Hi, hope you are well, I must admit I haven't read your story completely (yet) but I did consider something....

I think Glaucoma is due to over-pressure in the eye, right? Well if you perhaps consider the 'mind over matter' angle of things you should try to do exercises that make use of the body and mind in such a way as to reduce pressure, by meditating and doing breathing exercises, stretches and massages, aromatherapy etc, eating foods that are known for their anti-inflammation properties.

Perhaps the combination of these exercises of thought and body and diet would help lessen the impact on your life that results from the glaucoma.

oh and definitely cbd oil, it seems to be the cure all thing at the moment