Photo: Shari Czerwinski takes an adaptive-pedal-equipped bike out for a test ride. She suffers neurofibroma and has limited use of her left leg. Courtesy Photo
SG resident overcomes neurofibroma, receives Challenged Athletes Foundation grant
by Keith Beebe
SUGAR GROVE—It was 2004 when Sugar Grove resident Shari Czerwinski noticed she had some numbness in her left leg. Numerous tests and X-rays showed no abnormalities in Czerwinski’s body, but by 2006 she started to display a bit of muscle atrophy in her left foot, and by 2008 her left knee would buckle occasionally when she walked.
Still, multiple tests, MRIs and X-rays revealed nothing of concern.
“I knew something was wrong, as it is obviously not normal to have a leg that feels numb, no reflex, and falling down because your knee buckles, but I gave up finding an answer,” she said.
It should be noted that Czerwinski has suffered from Ankylosing Spondylitis, a painful and debilitating form of arthritis that targets the spinal cord and larger joints in the body, since 1998. After tests revealed nothing of concern in her body, Czerwinski said her rheumatologist wrote it all off as a rare complication of the disease and upped all of her rheumatological medications.
Fast-forward to February 2009, when Czerwinski’s car was rear-ended on the Eisenhower Expressway, leaving her with several herniations and a lot of pain. Czerwinski began visiting a pain clinic the next month and mentioned to her doctor all of the problems she had with her left leg. An MRI of Czerwinski’s abdomen that June revealed what had been plaguing her the previous five years: she was suffering from neurofibroma.
“I had a 5.5 inch-long tumor called a neurofibroma along the femoral nerve, which is the largest nerve running down the front of your leg,” Czerwinski said. “They assembled a team of three surgeons to discuss getting this tumor out with the most success of me walking again.”
Czerwinski went in for surgery that September, and doctors were forced to remove seven inches of her femoral nerve, because it wouldn’t separate from the tumor. The decision was made to remove a section of nerve from her inner thigh and graft it onto the femoral nerve. She then had to wait 12 months and endure a grueling recovery to see if the nerve would regenerate.
“My left leg was partially paralyzed. I could only walk with a leg brace. I could not march, or run, or lift my leg without grabbing it with my hand and picking it up,” said Czerwinski, now 41 years old. “It has affected everything. I have fallen several times since the surgery and injured my leg. We had to remodel the bathroom to make a handicapped shower. We live in a two-story, and just getting up and down stairs is very difficult. I have to get help with a lot of daily activities. My family—husband Chad, son Ryan and daughter Katherine—have been great at helping out with things I need.”
“Shari’s ‘disability’ has definitely been challenging for us. We often joke that if this is a test, we should really study harder, because we have to keep taking it over and over again,” Chad said. “I am thankful, however, that we have been able to face it together. Patience is something we are constantly learning through trials.”
Northwestern doctors told Czerwinski there was nothing else they could do to help her. Following a considerable amount of research, Shari and her husband were introduced to a surgeon in San Antonio, Texas, who was willing to bring the couple out so he could try to attempt a procedure on Shari in which the large muscle (latissimus) would be removed with all the nerves attached and put into her thigh to form a new quadriceps muscle. Shari went into surgery in December 2010, at which point doctors discovered that the original nerve graft had pulled apart and was not connected.
“He decided to try reconnecting it to give it a second chance. It did not work, either,” Shari said. “They (had) given me the option of going through that all again and trying to move the back muscle this time, but after two long, grueling years of therapy and doctor appointments and getting my hopes up, I had come to a place of acceptance. I was not willing to go through another surgery and another 12 months of waiting to see if it would work.”
Things didn’t get any easier for Shari from that point on, as her kneecap would occasionally dislocate due to the lack of muscle in her left leg. She underwent a partial knee replacement surgery last November, and recently completed therapy at Fox Valley Physical Therapy and Wellness in St. Charles. She also acquired a “smart” leg brace, which she said helps her walk in a more normal manner. Doctors hope Shari’s most recent surgery will ease her pain considerably, but have also discussed performing a complete knee replacement if desired results for Shari’s knee are not reached by the end of this year.
Amputation could also be a possibility if Shari’s knee pain continues to persist.
“I have had to give up a lot of outdoor activities we used to enjoy, such as biking and hiking,” she said. “Through all these trials, my faith in Jesus Christ helped me to persevere. I have tried to stay as active as I could, drawn strength from Him, and learned to rely on others for help, which was not a lesson easily learned for me.
“This is by far the hardest thing I have ever gone through, but by the grace of God, I am able to get up with a smile on my face and remember all the things I have to be thankful for, and not dwell on all the hardships.”
In order to get back to doing the outdoor activities she loves, Shari began researching adaptive equipment, and did a test ride on a recumbent bike with adaptive pedals at The Bike Rack in St. Charles. Adaptive equipment is expensive, however, and her husband, a carpenter, was seeing less and less work due to a sluggish economy.
“I wanted to be able to get out of the house and do sports with the family, and staying active helps so much mentally and with controlling some of the arthritis pain,” Shari said. “I researched some more and found that there are agencies that help people with part of the costs of specialized equipment.”
Shari then contacted six agencies, and promptly received rejection letters from five of them. The remaining agency sent a letter stating that they make those decisions in April each year. Sure enough, Shari received a letter from the Challenged Athletes Foundation two weeks ago stating that they would award her a $1,500 grant toward the cost of an adaptive bike.
Her new bike is on order at The Bike Rack.
“I just want to encourage people not to give up. If you feel something is wrong with your body, keep searching for answers,” Shari said. “I think disabled people become isolated due to lack of mobility, depression, etc. I just want to encourage people to get outdoors and be active, no matter how small of a start (they) have to make. It really does boost your mood. I am so excited to get my bike, and already have lined up willing family and friends to go for a ride.”