A bit more about me

I have a Spinal Cord Injury (SCI). SCI is an injury to the spinal cord and the most visible symptom is the paralysis of legs. Usually they are caused by accidents and falls, but in my case it is due to a bend in my spine [which is medically termed as Kyphosis].

It all started with a tumour in my spine (at T4-5) when i was 14. The tumour caused temporary paralysis of my legs and pain in the back. The tumour had to be removed by a surgery(called laminectomy) in the spine. This surgery involves removing some bone of the spine to get access to the tumour. The surgery was fine and i was soon back to normal. I had to do a course of chemo and radiation therapy as the tumour was classified to be malignant (PNET).
Although things got better, my spine started to bend at this point slowly. It was required to do a bone graft along with some steel rods at the time of this surgery to stabilize the spine. The hospital authorities were ignorant about this.

Fast-forward three years, now again I’ve difficulty in walking. MRI show that the spine is considerably bend and it is choking the spinal cord to cause neurological problems. It is time for a corrective surgery. The procedure is to graft and fuse the bending area. The surgery was done but it caused more problems than any good. The graft was not good enough and the spine started bending again(this time at a higher rate).
It was decided to redo the procedure. The procedure was a moderate success and at the same time an utter failure. It reduced the rate of progress of kyphosis(bend) but also resulted in permenant paralysys down the surgery level. The paralysis was not due to any mistake in the sugery but because of the loss of blood supply to the spinal cord after repeated surgeries. This was on 1999 when i was 19.

My SCI was classifed as T4-5 complete. I have paralysis chest down and i use a wheelchair since then. I do not have any sensation (ie feeling of touch, heat/cold and pain) or movement below that level. Also my bladder and bowels are affected (there is no volunteer contol or feeling). I catheterize 5 times daily to pass urine and use suppositories to move the bowels on alternate days.
Because of my kyphosis (spinal bend), i have constant back pain while sitting. I usually dont sit more than 3 hours continuously so that the pain doesnt get much worse. My vital capacity (breathing) is also considerably reduced because of the bend. Its the pain, breathing, bowel and bladder issues are my major problems and not the inability to walk as others think. Believe me, its not much of a problem if I cant run or walk, wheelchairs work really well!

Fast-forward ten years. I have a website now and you are reading this :)
My spine is still bending at a slow pace like the Leaning Tower of Pisa, and of late i have begun having some neuro symptoms with my hand too. Life is indeed a roller-coaster ride!
Over the years, i’ve gathered quite a few information about SCI from internet and also from my own experience. I hope to share them here.
I am okay with questions and if you have any, either about me or SCI in general, drop an email.

Email me at: tonyjjose#gmail*com
(replace # with @ and * with .)

3 thoughts on “A bit more about me

  1. Amrita

    Oh u poor, poor baby!*tight hugs*
    and ty for the xbox info!!really appreciate it!
    Hope you get better soon!

  2. Amrita

    and also ty for the wheelchair post!lol!it really does get a lil awkward when approaching a guy in a wheelchair…i get how u have to see past the wheelchair and see him as another lifeforce just like every other entity in this universe..we’re all just tiny specks in the universe…(o_o)..this is going to turn into a star wars monologue,,so im just gonna end it here…ty ty again(^_^)..will save ur blog to my favs!!

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