Please note that we are seeing high patient volumes in the emergency department. Learn more >>.

Know before you go to the ER
Select the search type
  • Site
  • Web
Go

News Release Archive

A Different View: Living With Muscular Dystrophy

  • August 26, 2005
  • Number of views: 4315
  • 0 Comments

KSDK News, August 26, 2005

Living with a physical disability can be a challenge. People often look at you differently. That was certainly true for Aaron Dopf. But his biggest challenge was the way he looked at things. That all changed thanks to a St. Louis doctor.

To understand where Aaron Dopf, 26, is coming from, you have to know where he''s been.

"Now I walk around and people look at me like I''m a regular person, and I don''t get stared at, I don''t get any comments," says Dopf. "I would have to actually hold my head with usually both hands behind my head and still prone way back like that, very noticeable, a very obvious problem."

Say you''re having lunch outside with friends. While they''re soaking up the sights around them, imagine if the only thing you saw was what was above you. You saw no smiling faces, no eye contact, not even the food you''re being served. You saw nothing, but what lies above you. For eight years, it''s how Aaron saw the world. He knew that would change, the day he met orthopedic spine surgeon, Dan Riew.

"When I first met him, he was sitting down and he was looking ahead and it didn''t look all that bad, but once he stood up I realized how bad a condition he had," said Dr. Riew.

Aaron suffers from a rare condition called Emory Dreyfuss Muscular Dystrophy.

"The muscles just don''t function properly. as a result, patients with this type of muscular dystrophy can often end up wheelchair bound," said Dr. Riew.

"It all became much more pronounced after hitting a number growth spurts," said Dopf, "Especially right around 18, the muscles in the back just kept tightening up, and it just pulled my head way back."

The problem was so severe, doctor, after doctor refused to operate. Everyone refused but Dr. Riew.

"He said you know this is an unacceptable way of being, nobody should have to live like this and we can fix it," said Dopf. "It was almost too good to be true."

"The fix for the problem was not that difficult," said Dr. Riew. "It was just a matter of realigning the neck and putting it back to a reasonable position."

Dr. Riew''s biggest concern, that straightening the neck could make Aaron''s precarious balance even worse.

"He and his family both decided as long as I''m able to move everything, it''s not paralysis, its just that a lack of balance, I''d rather have that and have a normal looking head and neck than to go on living like this," said Dr. Riew.

During two separate surgeries, Dr. Riew used more than a dozen screws and rods to hold Aaron''s neck in place.

"What we did is, is released all these muscles in the back of his neck and then we forced his neck into a straighter position," said Dr Riew. "The spine went from this position to like that, almost something like a 60 degree correction in his alignment."

It was more successful than Aaron imagined.

"He said that there are people that he''d known for a couple of years that didn''t recognize him," said Dr. Riew.

"There were some initial challenges I had to get over, first was getting my balance back, I had a whole new center of gravity and walking was a bit of a challenge at first," said Dopf. "Even just the way the world looked to me and everything was radically different all of a sudden."

And just as quickly, it gave Aaron a different view of what lies ahead.

"It''s great, it''s like a whole new world," said Dopf.

Aaron credits Dr. Riew and the nurses and staff at Barnes Jewish Hospital for giving him the opportunity to see the world around him with a new perspective. Shortly after our interview, Aaron was leaving for Paris, he couldn''t wait to truly, see the sights.

Print
Tags:
Rate this article:
No rating
Find a doctor or make an appointment: 866.867.3627
General Information: 314.747.3000
One Barnes-Jewish Plaza
St. Louis, MO 63110
© Copyright 1997-2024, Barnes-Jewish Hospital. All Rights Reserved.