My Battle Against PIC

I lost central vision in my left eye too in September 1998. Right eye was already bad.

On September 1, 1998 as I stepped into my class, little did I know that the next moment my world was going to crash. As soon as I opened my register, I got the shock of my life. The names in the columns were all in a jumble. I tried reading but I couldn't.I felt dizzy and not able to figure out any thing walked in and out of my classes like a zombie. I was confused. I could see but could not read or write anything.I could not keep the tip of my pen on the paper at the right place.

There after started a mad rush to the hospitals, doctors, angiograms, scanning, visual tests and what not.

The doctors too gave up. Nothing could be done, they said. It was macular degeneration due to high myopia, they said. I could not read or write anything. Words appeared distorted and jumbled.

My vision deteriorated further and faster now. I could not walk on the road alone.I could not see the steps very well. Everything was hazy and distorted.

My husband took me to England for further consultations. I went to see Mr.Wong , Consultant Ophthalmic Surgeon at the St.Paul clinic of the Royal Liverpool Hospital,UK. He was the only doctor on this earth who gave me 50% chance. It was not macular degeneration but a rare eye disease called PIC i.e Punctate Inner Choroidopathya synonym for Multifocal Bilateral Choroditisin medical terms.There were lesions on the retina. A sub retinal neovascular membrane i.e SRNV had grown affecting the central vision considerably as it was very close to the fovea. A big opaque patch blocked the right portion of the central vision in the left eye.

Retina in this condition gets elevated due to the neovascular membrane beneath and it is like a blanket spread over a pillow distorting the image, I was told.CNVM grows due to the fibrosis of leaking abnormal blood vessels.

It is a rare condition that occurs in highly myopic young women. I consulted Mr. David Wong in October1998 and he offered to operate upon the left eye first because it had recent history and he was hopeful that Photoreceptive cells might still be alive. I took the 50 percent chance he gave me because there was no other direction I could have taken. Either face further deterioration or take 50 percent that he offered. Already the vision had reduced to 20/200.

A subretinal surgery was performed on November 19,1998 with encouraging results.Prior to the operation I had only one line vision but after the surgery it improved to 3 lines.After 10 months I underwent surgery for cataract and immediately after that my vision improved even further and today, after three years it is 20/80 and is stable.

I am still not able to read or write small print because of distortion and a tiny blind spot which partially blocks my central vision . But I try and am able to scan bigger print, though I am still not able to read any books, magazines or newspaper.But whatever vision I have today is good and workable, though there are many punched out and missing areas.If I keep shifting my eye on the reading chart I can manage to read 5 lines comfortably and another one line with difficulty.

As for my right eye the condition perhaps had started much before the left.Rather I should say 3 years before. But due to wrong diagnosis I was kept under the impression that there was a tear on the retina because of which a black patch had covered the central vision and that there was no remedy available.

I do not blame any one for that but myself or my destiny perhaps or may be my carelessness and negligence. My left eye was good at that time and I ,unwittingly, chose to neglect the right eye.By the time left also took the same course central vision in the right had fallen to 20/200.

The process in the left eye had actually started much earlier.On March 31,1993 I got up from my afternoon nap and found , to my dismay, that I could only see upper half of the television.The lower half was black. The condition was attributed to Foster Fuchs by the doctors and I was told it was incurable. The panic and a terrible spell of self abandonment , depression and what not do not seem of any relevance today because today at least I know my path and I am geared to fight it knowing exactly what is wrong and what and how much to expect.

The vision that I had lost in the left eye in March, 1993 recovered on its own in 4 months,a peculiar trait of P.I.C. I was told later when I consulted Mr. David Wong.The loss of vision had been due to leaking blood vessels.Gradually the blood cleared resulting in regained vision but the scars remained and the vision was definitely distorted .Everything appeared at an angle of 40 degrees. If one is lucky and the the membrane does not grow at the place of leakage vision revives. My right eye started having the same condition two years later and how I wish I had known at that time or had been diagnosed correctly.Today I might have had a workable vision in the right eye.

I still have another long journey to take for my right eye in which I am clinically blind.I have not given up hope for my right eye .This is April 2000 and soon I shall be travelling to England again.

May 4,2000

The condition of right eye had deteriorated. It was leaking at three places. A new membrane had started growing below the macula. The old membrane had grown in size and had become massive. Moreover it was very active. The surgery would be very risky, I was told. An effort to remove both membranes could result in haemorrhage. Vision was only hand movement.PDT was ruled out as it would not improve the vision. Surgery was the only answer.

I took my chances and gave my consent as I had nothing to lose in this eye. If I gained something it would be my bonus.

May 20,2000

My right eye was operated upon successfully.The credit goes to that brave man Mr. Wong again, who did a wonderful job of it. He, not only removed both the membranes but managed to remove the old massive membrane without damaging the epithelium. When I went for a follow up two weeks later I was able to read two and a half lines through the pinhole.Already the cataract had set in and was growing fast.Two and a half lines was my bonus and I am hopeful for more after the removal of cataract in December,2000.

I may not revive full vision but whatever I revive shall assist the vision in the left eye which is my only hope for the rest of my life. I have something in my right eye today as against nothing ,so I am happy.

December 16,2000

Cataract was removed.There is slight improvement in the vision, though not very significant. I have been told to try and read big print slowly to give exercise to the eye since the angiogram reveals that macula is clear of any scar. Perhaps the cones and rods may still respond. I am practicing and believe me I do notice cloud clearing sometimes though very slightly. But it keeps my hope alive.

Unlike AMD,PIC is a rare disease ,therefore very little lnformation is available, but I continually and relentlessly search the web to find it, though the task is tedious .I have provided some useful links on subsequent pages and in future I shall like to add more.Also, if you have any other useful information regarding PIC treatment please e-mail me. I would very much like to put that information or links on my page.

April,2001

I am in Little Rock,Arkansas on a visit. I found out about Division of Services for the Blind. People here are very helpful. I have been found eligible for these sevices. I am thankful for all the assistance being provided to me. I shall have mobility and orientation training and hope to regain my confidence and become independent again.

August,2001

I have completed my mobility training and I have also learnt Braille, Grade1 and Grade2 both. A whole new world has opened before me. I find myself much richer than before. Besides, I am reading talking books also. The experience of being able to function independently and be productive again and regaining my confidence is euphoric.If I am able to motivate someone like me through my pages, I shall feel my life had some purpose.

'Virtual Bedlam' :The story of a brave woman

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I am a member of The Blind and Visually Impaired Ring.