For Kathy Kuhl, what she thought was dizziness or vertigo, became a diagnosis of a rare cancer known as ependymoma.  It is a tumor of the brain or spinal cord.  In this episode of the @CancerInterviews podcast, Kathy tells host Bruce Morton she had to undergo surgery to get her spinal cord removed, which began a years process to regain something close to normalcy.  During that time, she suffered paraperisis, a form of paralysis that required additional hospitalization and rehab in which she had to learn how to walk.

 

All seemed to be well for Kathy Kuhl of Minneapolis, Minnesota.  In 2014, she began experiencing dizziness and vertigo.  Doctors checked it out but couldn’t find a problem.  Nonetheless, Kathy had problems, namely a severe burning sensation in her back between her shoulder blades.  The burning was so intense, in order to sleep she had to lie down on an ice pack.

 

Kathy went to see a neurologist, who ran an MRI.  Upon seeing its results, the neurologist told Kathy she had to get to a hospital right away, and another neurologist was waiting for her because the scan on a cancer tumor in her spinal cord.  Kathy knew things were getting worse because with greater frequency she was experiencing back pain, blurred vision, dizziness and neck stiffness.  She was told that was because the tumor was growing and impeding the flow of spinal fluid.  Kathy recalls feeling “blank and dark” with this news, but knew she had to be proactive.  In addition, prior to surgery, the care team had to make sure the procedure would not adversely affect nerves or motor skills.  But they went ahead with the surgery, and when she woke up, she was told the procedure went well.  Kathy was happy the surgery was over, but she couldn’t feel anything, and that’s when she was told she had paraperisis.  After being taught how to walk, she left the hospital, but had to come back for outpatient physical therapy for the next two years.  Kathy says until one loses the ability to walk, they don’t realize that walking involves several intricacies.  While she regained pretty close to a normal gait, she still goes in for physical therapy as she has weakness in her left leg. 

 

It wasn’t until two to three years after the surgery that Kathy Kuhl really felt like she was getting back to normal.  The day she went in for her MRI, she actually went for a run, but says going forward, she won’t be able to do that.  She loves to go on walks with her dog, but says sometimes even that can be a challenge.  Kathy is grateful that she lives in the Twin Cities because if she lived in say, rural Minnesota, her journey would have been much tougher. 

 

That’s when Kathy Kuhl and her husband founded a non-profit, WalkTalkConnect.  Its primary focus is to get survivors, their friends and families to go on a three-mile walk, connect with other patients and caregivers, to share their experiences.  It is also geared toward health care professionals, so they can learn more about what those with rare cancers go through.  WalkTalkConnect has a website, https://www.waltalkconnect.org, where people can find post-patient stories from survivors of ependymoma, astrocytoma, meningimoma, and other rare tumors, whose numbers go into the hundreds.  The site tries to address information and facts about different tumors.

 

Additional Resources:

 

Support Group: WalkTalkConnect 

 https://www.walktalkconnect.org