Janet's Story

A Rare Condition Brings One Woman from Texas to Rhode Island for Relief

Janet was a crafting, cooking, independent certified nursing assistant in Texas who saw the life she built slowly fall away as she developed dropped neck syndrome, a rare condition that left her neck muscles so weak that her head would drop forward and to the side. This condition made it difficult for her to perform even the simplest of tasks.

Before her illness, Janet spent her free time making beautiful handmade cards, a hobby she adored, and loved crafting in numerous other ways, as well. Unfortunately, dropped head syndrome took away her ability to enjoy her craft or even be able to eat easily. Her condition was more than a physical struggle; it was an emotional one too.

“You don’t live really,” said Janet. “I’m choking all the time when I try to drink or eat something. I have to use my hands to hold my head up to swallow sometimes or I’d choke. I don’t sleep good. I can’t see out of the car when I ride in the car. I’m not allowed to drive, of course, because you can’t drive with a head like this.”

Janet's Doctor Discovers the Spine Program at The Miriam Hospital

After extensive national research, her doctor found that one of the few experts capable of addressing her condition was Alan H. Daniels, MD, the chief of the Division of Spine Surgery and director of the Adult Spinal Deformity Service at Rhode Island and The Miriam Hospitals, part of the Lifespan Orthopedics Institute. Janet took the brave step to travel all the way to Rhode Island to receive treatment from Dr. Daniels and his skilled team. 

“Janet traveled all the way from Texas for this surgery because there are very few centers in the country that take care of spine problems that are this complicated,” said Dr. Daniels, who led her surgical team at The Miriam Hospital. “We have a huge volume of spinal deformity patients, and for her, it was worth it to travel all this way to get this surgery done safely in a great environment knowing that she’ll have a great, durable result.” 

After a few conversations with Dr. Daniels, Janet knew he was the right person for the job.

“The more I talked to him the more I was sure he would be somebody who would be able to help me as much as he could,” she said.

Janet appreciated the warmth of the entire team at The Miriam and their ability to make her feel comfortable before, during, and after the complex procedure to straighten her spine. 

“This is a tremendously invasive surgery to realign someone’s head like this,” said Dr. Daniels. “Having dropped head syndrome is devastatingly difficult. You can’t look people in the eyes. You can’t look up to see the sky. You can’t see the top row at the grocery store. Her quality of life is going to be tremendously improved.”  

Going Home Earlier than Expected

Just nine days post-surgery, Janet was walking confidently with a brace, and within three weeks, she was off pain medication and actively participating in physical therapy. This procedure had a remarkable impact on her quality of life – from performing chores for herself to enjoying her crafting more easily.

“I couldn’t believe the things I was doing after the surgery,” said Janet. “In fact, I was let go from rehab early.”

Not only is Janet appreciative of Dr. Daniels for her improved quality of life, she values all of the staff at the Spine Program at The Miriam Hospital for their care during her weeks in Rhode Island. “I couldn’t ask for better,” she said.

Today, Janet is back to enjoying the life she loves. Her crafting supplies are once again a source of joy, and she takes delight in making her beautiful handmade cards. Janet's story is a reminder of the impact that expert medical care can have on a person's life. Thanks to the dedicated team at The Miriam Hospital, Janet is no longer just surviving; she is truly living.