Suffering is only worthwhile if it benefits someone else MDL

My glaucoma story

Aged forty in the U.K. And having a close relative with glaucoma we are expected to have annual sight tests.

My late Father who was Polish and of whom we knew nothing about his family medical history had OAG and wet and dry macular degeneration from age of 65-70 and lived until,he was 93 with Alzheimer’s and very little sight left at all.

I had regular eye tests from age 40 and my IOP was always high . I wore corrective spectacles for reading as I was long sighted with a stigmatism.

In my late forties my optometrist decided I should see a Specialist as my IOP ( interoccular pressure) were high and suspected I may have glaucoma.

It was not diagnosed at that point and this went on until I was 54 when in a regular sight test the optometrist discovered cupping on the nerve in the left eye and I was referred to a glaucoma clinic.

Still not diagnosed with glaucoma but high pressure loss of FOV (field of vision)and cupping with nerve damage to optical nerve I was prescribed timalol eye drops.

I had adverse reactions to the drops and suffered with insomnia and other side affects.

I tried other drops to no avail as I am very drug sensitive and the two groups of common drugs both gave me side effects.

I was finally diagnosed with glaucoma in 2014 and was given almost a year without using drops before a decision was made for treatment.

During 2015- 16 I was losing some FOV and it became necessary to make a decision about treatment as the drops were not working and I was very intolerant of them.

I was advised to have a trabeculectomy in my right eye but it was my left that was worse than the right.

I had to move area in 2016 and started treatment at Moorefields world renowned eye hospital in London.

They took me through a round of eye drops again and yet again adverse reactions occurred.

At this point I was feeling depressed, anxious and scared of what could happen and feared losing my sight and having the operation.

It began to make me very panicky as during the dark winter months I felt that my sight was deteriorating and I often stumbled on steps or corners.

I knew I had to do something about it so I very reluctantly agreed with Mr Barton my consultant to undergo a trabeculectomy. My IOP measured 26-29 at this point and needed to come down and quickly.

I was experiencing blurred vision , halos and headaches especially when laying down and the headaches would wake me up early mornings as well.

Driving in the dark was a problem as my vision was blurred and I didn’t feel that I could see well enough to be safe so I stopped driving at night.

I under went the trabeculectomy with Mytocin C in April 2017 on my right eye then same again eight weeks later on left eye.

I didn’t know the ops were going to be so close together !

I have a Bell’s palsy or Ramsay Hunts syndrome = facial palsy to right side of my face . This actually makes it more difficult to anaesthetise me as the nerve endings re grow in odd places and are dead in other places, hence normal anaesthesia needs to be directed by the patient slightly more than normal.

The operation itself was a challenge as I also have a back injury and laying on a flat hard bed completely still for 1.5 to 2 hours was difficult, but I did it.

The surgeons were excellent and the operation is done under a local anaesthetic into the corner of the eye. The conjunctiva ( white) is opened up and a channel is made to allow drainage of optical fluid. Mytocin C is a anti cancer drug which is applied very carefully as it’s stops the channel healing up and this drug is attributed to the success of trabeculectomies because the body wants to heal any holes that are there.

After the operation the eye is covered with a shield and gauze and you are to attend the hospital the following day for cleaning of the eye and shown how to apply your medication.

The post operative course is intense, a series of antibiotics and steroids are applied by the patient every four and two hours consecutively for at least six to eight weeks during which time a weekly visit to the out patients for IOP measurements, releasing of sutures where necessary and lots of tests are undertaken ,my eye pressure was low at 6 and remains so to this day so I have to be careful not to lay against it or press it as it could be damaged.

There was a lot of pain initially and it was very uncomfortable to sleep sitting up with an eye shield taped on to cover and protect the eye.

You cannot allow water to enter the eye and have to clean it with salted water and pads twice a day.

Sunglasses or protective eye wear are necessary and you are advised not to drive until you have the all clear.

For a few weeks my sight was very blurred and I couldn’t read properly and for the first few weeks I needed help to go out and walk around.

Bending and lifting was out of the question so much help is needed around the house!

Just eight weeks later I underwent the whole process again this time with a sedative to help my back. The operation was more painful than before and I needed extra anaesthetic. The recovery was better and my eye wasn’t as blurred for so long. I needed some sutures removing and this was done by a laser cutter which was very painful. The round of drugs and visits were as intense and my IOP was higher than before at 13 which then settled at 16 which they were happy to accept so I now have IOP of 6 and 16.

I have lost some field of vision and my left nerve is damaged.

My prescription is stronger and I can’t read without glasses which I could do before .

I am now able to drive at night as well as in the day light. The darkness or sudden darkness is difficult to adjust to and takes time.

I wear tinted glasses now as the sunlight is too powerful and gives me headaches as do bright electric lights.

I find reading for longish periods tiring, or watching tv or reading a screen.

I apply false tears everyday as this helps to moisten the eye, I clean my eyes with a solution to stop blepharitis.

I am very thankful and grateful to those who cared for me and to my family for their support of me.

Being able to see and keep ones eye sight is a precious gift and so I just went and looked at all the beautiful things in the world including my children and grandchildren , flowers and art!

If I can help you in any way with any questions or fears you may have please let me know. You are not alone and the scary Road is not empty there are people to guideyou along emotionally and physically.

Don’t put off having your eyes tested do it today and get your pressures. Checked I did and still developed glaucoma ! But there are new techniques and good drugs available to help you .

Margaret Dexter-Lewis