A Stroke Survivor's Story, From Despair to Hope to Action

Janet Levy is an amazing stroke survivor who is on a mission to end the debilitating and deadly strokes that can occur after chiropractic manipulation. When 34-year-old model Katie May died in February 2016, Janet sent stroke.about.com the sad news of the model's final 2 tweets before her death, 'Pinched a nerve in my neck on a Photoshoot and got adjusted this morning. It really hurts! Any home remedy suggestions?' on Jan 29 followed by 'It still hurts, going back to chiropractor tomorrow.'on January 31.

Why does Janet Levy tirelessly work to prevent strokes caused by chiropractic manipulation? It all started because she had a stroke in 2002 after her own chiropractic manipulation and initially did not recognize her symptoms. Her chiropractor also didn't recognize that her dizziness, nausea, and severe headaches were signs of a developing stroke due to an arterial tear.

A Life Change

As a healthy young woman with a stiff neck, Janet quickly found herself dealing with brain surgery to remove part of her cerebellum, a region in the brain that controls balance. She recovered because she was one of the lucky ones. But recovery for Janet means adapting to left sided weakness, constant headaches, trouble putting thoughts together and struggling to find the right words. She says that most people wouldn’t know her struggles because she works so hard to function as well as possible.

Discouragement

Janet says her doctors often told her that her disabilities would remain permanent, especially early on.

She says that support groups were not as helpful as she had expected because those that she joined turned out to be a place for stroke survivors to share and accept their disabilities, rather than work on finding ways to improve. However, she does advise other survivors to find people who have been through what you are going through- for support, encouragement, and advice.

A Light of Hope

Finally, one neurologist told Janet simple things like, “We don't know anything for certain about your recovery. But what we do know is that the brain is very powerful and that we can grow new nerves that will find new pathways to trigger those muscle groups. So figure out how to give the new nerves a reason to grow and move from your shoulder down to your fingers and maybe you'll get your arm back.” And she did just that.

Anger

Janet describes a deep anger. “One of the hardest things for me as a stroke survivor, especially a chiropractic stroke survivor is the anger I feel every day knowing that it was done to me. It forever changed my life.”

A Burst of Encouragement

One day, Janet’s cousin told her about a long-term patient who resided in a special care facility. Linda Solsbury was a mute quadriplegic as a result of a chiropractic manipulation. Janet says that 2 years after her own stroke, “when I finally got my life back to a ‘near normalcy’, I went to see her at the hospital.

  Sure enough, there was a woman there named Linda Solsbury who had become a mute quadriplegic at the age of 32 as a result of a chiropractic manipulation. She had sued her chiropractor and won a 10 million dollar judgment, but her chiropractor had no insurance, filed bankruptcy and she got close to nothing."

It was Linda, Janet says, “who could not speak, but was able to move her right hand ever so slowly across a computer keyboard so that she not only could communicate in some way but she could also use the internet. She showed me the list of over 200 people that she was in communication with who had also suffered a chiropractic stroke. I told Linda that I had thought that what had happened to me was rare, a fluke. But Linda insisted it was not that rare and was far more common than doctors realized.”

Janet continues, “Linda asked me what disabilities I was left with as a result of my stroke? I went on and on about this and that....my aches and pains, my depression, my new mental state, my weakness which forced me to quit what I loved to do like play tennis, go for long walks, ski, things with my boys, etc. etc… I just kept going on and on until finally I caught myself. Here I was in a hospital room talking to a woman who had just spent the last 20 years of her life as a mute quadriplegic and I had the absolute gall to complain about what obviously were trivial things compared to her state of life.  I suddenly broke down to an uncontrollable sob and apologized over and over.

Then this absolutely wonderful woman slowly wrote on her computer, ‘Janet, stop apologizing. Your pain is still real. It may be different than mine but it is still your pain because your life as you knew it has now been changed forever. So you have a right to complain.’

“No, I don't. I replied. I can walk now and I can use my arm and I can talk and you can't!”

Linda said "But you can make a difference. You can do better than me and my computer. Please do me one favor…Get the word out that a chiropractic manipulation CAN and DOES cause strokes, so no one ever has to needlessly suffer permanent disability from a chiropractic manipulation ever again.

Janet explains, “I made her that promise that day. And that's what began my role as advocate.”

Advocacy and Awareness

Janet has faced her share of challenges as a patient advocate. She has worked hard in Connecticut to get laws passed that would mandate informing patients of stroke risk associated with chiropractic manipulation. Her efforts brought 10 chiropractic stroke victims to testify. She describes meeting with legislatures, “Some came in their wheelchairs. One victim even showed her feeding tube as she was left unable to swallow for the past 15 years because of a chiropractor who had crushed her artery by a chiropractic manipulation and she was taken directly by ambulance to the hospital from the chiropractor’s office. Many walk in but are unable to walk out.” But her efforts have been an uphill battle, often met with resistance and protest.

She has also helped the American Heart Association by securing Kevin Sorbo, the Hollywood 'Hercules' actor, who had had a stroke as a result of a chiropractic manipulation, to speak at an informational forum.

And she reaches out across the media and tirelessly works to bring awareness to patients, especially young patients.

Janet Levy is a true hero, a stroke survivor who looks beyond herself every day to help prevent stroke.

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