‘I never thought I’d walk again’

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Toni Caban, originally uploaded by rsdscrpsnews.

‘I never thought I’d walk again’

By Toni Caban for CNN
Friday, December 23, 2005; Posted: 11:33 a.m. EST (16:33 GMT)

CNN) — MS sufferer Toni Caban was making good progress with a physiotherapy program to regain the use of her lower body until she fell and injured her spine. In April this year, she had a cervical and a thoracic spinal cord stimulator implanted via surgery, which she says have given her back her life. This is her story:

For years I had symptoms of Multiple Sclerosis but no one put them all together. I would have trouble with my co-ordination occasionally, tremors would come and go, I would trip on things and choke on my food. I had blurry vision and my legs would fall asleep while I was walking. One day, seven years ago, I couldn’t get out of bed. My top half could move, but my bottom half could not. I was diagnosed with MS about three days later.

The diagnosis came as a shock but I soon learnt that if I didn’t learn everything I needed to know about the disease, I wouldn’t be able to develop a plan to live. In the meantime, I bought an electric chair, a van with a wheelchair lift, a ramp built outside my house.

After a month, with some modifications in place, I was comfortable enough to return to my work at a not-for-profit child and family agency. I would work 40 to 60 hours a week in my wheelchair. I would go to court, schools, conduct weekly home visits with clients and I was on call 24 hour a day. I was having a lot of physiotherapy to try to regain strength in my back and legs. I was soon able to work 25 feet with my legs in braces, using a crutch.

Then one day at work, I fell in a non-disabled bathroom. I was found unconscious 45 minutes later by my co-workers. I had injured my upper and lower spine, ankle and shoulder, and had concussion.

I was constantly in terrible pain. It hurt to sit in my wheelchair — I had a terrible pain in my lower back like someone had their foot pressing on it all the time. It felt as if it would snap. Then the pain would run down my leg. If I tried to stand, the pain would intensify in that area. Also, I continued to feel a burning sensation in my ankle and foot, although they were only sprained. This was later diagnosed as reflex sympathetic dystrophy syndrome (RSD).

I couldn’t use my crutches because my shoulder and neck would go into severe muscle spasms. The pain would get so bad, it would trigger a MS flare-up. This could mean anything from severe hand or head tremors, choking, partial paralysis of my legs, complete double vision or lack of co-ordination. I needed help with the most basic daily tasks.

You name it, I tried everything. I was in pain management for four years, tried physiotherapy four times but could never get beyond three weeks because of the pain. I was literally confined to bed most of the time and was on pain killers. I saw many neurological specialists to get some help. Everywhere I went, I was sent home with drugs to dull the pain.

Then I started seeing a pain management doctor. He wanted to give me more morphine but I was opposed. I then found a husband-wife team, Dr. Jeffrey Epstein and Dr. Ronit Adler, who seemed like they might be able to help. He is a neuro surgeon, she a pain management specialist.

With their help, I tried several different options to block the pain. Some worked in the short-term, some did not. I then became a candidate for a spinal cord stimulator, where electrical impulses are used to block pain from being perceived in the brain. Instead of pain, the patient feels a mild tingling sensation.

The procedure involves having a small wire with a probe in the area that’s causing the pain. It is attached to a remote-controlled transmitter that you wear during a three-day trial, to see whether the treatment works. During the trial, the level of pain dropped by 60 percent.

A month later I had a permanent stimulator implanted. They implanted a battery just beneath my skin, which has a five- to six-year lifespan. I leave it turned on 24 hours a day. Twice a week I wear a Velcro belt which charges up the battery.

Since April this year I now have two stimulators implanted, one in the lumbar area and one in the cervical area. Having these implants has given me back my life. I still have days where my pain is bad, but it is nothing compared to what I once endured. Getting rid of the pain has enabled me to complete my physiotherapy program — the first time I have been able to do that since being diagnosed with MS. I can now walk 125 feet with no braces and no crutches.

My life has begun again. I still use a wheelchair for shopping but I am back at work full-time, something doctors said would never happen. I also spent most of the summer in my garden, one of my greatest pleasures in life. Without the stimulators none of this would have ever happened.

Original Story @ http://www.cnn.com/2005/TECH/12/23/toni.cabam/index.html?section=cnn_latest

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