charukesi October 9th, 2006
Warning : Long public rant about painful private memories…
October 5th was an anniversary. Not a happy anniversary as such - four years of my spine surgery. I first discovered that I had a spondilytis problem in early 2000. X-rays, diagnosis and pain-killers followed. And physiotherapy could have got me back on my feet. I left my job in Bangalore and went back to Chennai. Back home. The first session in Chennai went off fine. The second day, the physiotherapist instructed his assistant in an off-hand manner and vanished. The assistant placed high voltage electro-vibration pads on my shoulders and above the chest, just as he had done with the back. And vanished. The neck and shoulders and chest are much more sensitive than the broad expanse of the back - as I soon discovered. And I started having mild convulsions right there on the physiotherapy table. And by the time the assistant returned to put me out of my misery, I had developed spasms all over the upper part of my body…
More treatment, more bed-rest, more pain-killers… All that resulted in was a screwed up digestive system and an overall depressed me. That was the time I had first got admission into LSE for my Master’s course. And I had to let go of that… I got a deferment for the next year. And tried to get back on my feet. I kept fighting, I kept pretending that nothing was wrong… I gave up on “conventional” medicine and turned to alternative therapy. “Relief” was when I had short spells of painlessness… And I was already getting tired of it all.
Maybe I had convinced myself that all was well, maybe all was truly well for a brief while, I got married, went to LSE, travelled around the UK, slogged at school through the week and partied on week-ends. And kept ignoring all the warning signals that my back was sending me. I came back to India for field-work for my dissertation, wrote up the dissertation and sent it to the school. That was August 2002. And I was getting steadily worse. More doctors, more medication and treatment. I met doctors who were so busy making money that they had often two patients in the same room at the same time… and doctors who were so insensitive that they told me that I was imagigning my pain since they could not find anything obviously wrong with me… And this was a statement I was to come across again and again for years after that… I had to get on with life, I had to keep pushing myself.
And finally in the last week of September, I collapsed. And found that I had a disc prolapse at two levels on my cervical spine. That was when we got to know about this “world-famous” spine surgeon. He hd a look ay my MRI film, not at me, and pronounced that I had to be operated on immediately or face the prospect of being paralysed sometime soon… I recently asked my mother - last week, to be precise - what were we all thinking? why did we agree to the surgery then…? Clearly, none of us was thinking right then, or thinking at all. Three days later, I was operated on, two shiny bright titanium cages placed in my neck, bracing a tiny bone graft taken from my hip.
And I was sent home two days later, in an new improved version, according to the surgeon… “Don’t ask me these silly questions“, he told me… “I have performed thousands of complicated operations, this is a minor one for me“…
Not me doc, I wanted to tell him. Not for me this is a minor thing… But I did not say it… I had started getting into the resentful silent phase right then, even without realizing. Exactly how minor it was, I came to realize when my cousin’s husband, himself an ortho surgeon, spoke to my mother just after I had come out of surgery, and asked her - can she speak? My mother had no idea since she only saw my throat full of tubes - he persisted, ask her to say something… My surgeon had cut from the front of the neck, a place where the vocal chords and the food pipe and the wind pipe pass, and my cousin was afraid I could have lost my voice… He had seen patients so affected, who had to go through voice training for years after that. My surgeon did not just not mention these risks, but he actually dismissed all our concerns as silly questions…
I remember my mother’s face as I was wheeled into surgery, she the only one in my family who had any idea of what a spine surgery entailed. I rememember my new husband’s face then, as cheerful as I was trying to be, and as optimistic as I was. I now think back and wonder how we were so naive then… I remember the anaesthetist asking me count to ten, and conking off just after three. Strangely, I even remember feeling a sensation of a sharp blade against my hip some time for a second in between, no pain, just a sensation. And I remember coming to, five hours later in the post-op recovery room, the nurses fussing over me, and saying, such a young age… And I remember the anaesthetist barking at me, smiling at the same time, cut off these nails, you scratched my hands fully… I remember my father smiling at me and telling me that I had got the results of my course - I was now officially a graduate student from the LSE…
But I remember seeing my surgeon only once after that…
I had exactly two rounds of follow up with his team - not him since he had gone abroad soon after my surgery, for some important conference, no doubt. And I had no prescribed physiotherapy sessions, no recommended exercises but the most basic, no counselling, no answers to any of my or my family’s questions. I had a lot of “now it is over, you are perfectly okay”s thrown at me from the superbly skilled team of assistants. I spent the most terrible three months of my life after the surgery, trying to come to terms with the way my body had changed for life. I had toubleffalling asleep, I would stay wake through the night, drifting off only to wake up suddenly with nightmares. And trying to accept ther fact that the pain had not vanished completely as I had been given to expect.. Doctors told me that this was just post-op discomfort or “irritation” which would go away with time.
All through this, right from the first time I was diagnosed with spondilytis, I kept experiencing terrible pain in my upper back, near the shoulder blade. A tender spot that would make me unconscious if pressed too hard. Shoulders that were rock-hard and spasms that went up and down the spine and neck like electric shocks. I had mentioned this to my surgeon just before the operation, and to all the doctors I had met. And nobody took it seriously. Pain that was debilitating, that sometimes made it unable for me to get up from bed and move, pain that left me feeling exhausted and depressed all the time.
Pain that doctors could not understand since that did not show up on x-rays. I was meeting one doctor after the other, from all kinds of medical systems. I was tired of living with the pain. I was tired of being told that there was nothing wrong with me and that all I had to do was to stop imagininhg pain and gwt on with life. I was tired of answering questions from everyone. Above all, I was tired of this lonely, long battle with pain that seemed to not have an end… I had developed such a deep mistrust and dislike for doctors that I refused to see one even as I realized that I was getting progressively worse. Till one fainting spell last month left us with no choice but to go back to a doctor we knew and trusted, a family friend. Who also happens to be the brother of the surgeon who operated on me. So my husband and I went to Delhi last month to meet him.
H is everything his brother is not. Warm and sensitive, and with a willingness to listen. He asked me to give him a week with a physiotherapist he recommended. G is an efficient, white-haired, cotton-saried lady with a sharp tongue and a kind heart. I stayed on in Delhi for two weeks and went through the exercise and treatment sessions every evening. For the first time, between them, they gave me hope. And for the first time, someone had found out what the problem was. And how it could be helped. The surgery, while taking care of the disc prolapse, had on the other hand, added stress to an already weak region. Combined with lack of right physiotherapy for that, the pain had built up over the years. I used the word “myopic” while describing some of the doctors I had met, and found my physiotherapist nodding vigorously in agreement. Myopic, that is just the right word, she kept repeating…
I came back to Bombay and have been back at the lonely battle, trying not to give in to the pain, and telling myself that this would take time. Another friend of ours who has moved to Bombay recently, a very young orthopaedic surgeon himself, came over to our place this week-end. He says, I am not surprised no one was able to figure out your problem… this is diagnosed with clinical judgment and not through x-rays. He had recently researched it for a patient who had complained of such pain for many years, and not found relief with anything at all. He has further prescribed a course of vitamins and such to supplement the exercise and believes that this can be managed… He advised me to research it on the net, and last night, I found myself reading a page which seemed like a description on my own story - among other things, “Because the symptoms of —- are very much like many other diseases, diagnosis can be difficult. Currently, no laboratory tests can diagnosis the illness. Diagnosis is based on taking careful history and finding tender areas in specific areas of muscle“.
***
Among many warm things that friends have said and done for me, Blogpourri had advised me to write about this. As a way of letting steam, perhaps. But I was not ready to write about it. Telling this in public would mean putting this behind me, and I was not willing to do that. In some way, the anger, while not doing me any good, I am sure, also kept me going. Kept me to the fight… Surprisingly (to me), October 5th came and went, and I did not think about it; I am writing about it now after hearing and reading what I have recently. Perhaps, this will help me put it behind me. And move on…
