Young college grad trapped in her body with Guillain-Barré syndrome

A recent college graduate has spent the last eight months recovering from the rare condition of Guillain-Barré syndrome. She had to rely on her eyes to communicate with doctors and her family for the first month. It took months of rehab, a lot of grit, and plenty of tears, but Vanessa Villarreal is determined to gain her full strength back.

It all began at Christmastime in McAllen, Texas, where Vanessa was living with her mom. She had just graduated from college and was looking forward to her bright future when she had to put everything on hold this entire year.

"I woke up on Christmas Eve and immediately realized that my feet are feeling numb and my fingertips and my mouth are feeling numb, and I'm really confused by this sensation. I just assumed in a couple of minutes, this is going to go away, but my body is getting very, very weak," explains Vanessa. 

Vanessa says at first, doctors in the emergency room thought she was suffering from anxiety.

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"I was prescribed Xanax and sent home, but that couldn't have been more wrong. All throughout the night from Christmas Eve to Christmas, I am just going back and forth to my mom's room saying, 'Mom, something's wrong. Something's wrong. I'm losing breath.' I had to walk just a couple of feet to her room. It's getting really hard and I know my body is freaking out for some reason. Two days later, I'm still losing my upper body strength," explained Vanessa. "I am completely on the bed I cannot get up. (I'm in the hospital again) and complaining that it's getting hard to swallow my food. As I'm about to get the swallow test, my mom looks at me and she notices how my fingertips are purple and I look like I'm struggling to breathe. Immediately, she yells for the nurses and they took me to the emergency room right next door and they intubated me immediately. I have no memory of this, I had blacked out. By the next day, after being intubated for 24 hours, I finally woke up and I was completely paralyzed from my forehead to my toes."

Dr. Lisa Wenzel, who works at TIRR Memorial Hermann where Vanessa was eventually transferred for rehabilitation, explains Vanessa's diagnosis of Guillain-Barré syndrome or GBS. "It's an acute inflammatory condition of the nervous system. This is not the spinal cord in the brain, but actually the nerve. It's also called Acute Inflammatory Demyelinating Polyneuropathy (AIDP), It's a big word, but it's where the immune system attacks the peripheral nerves," states Dr. Wenzel.

Vanessa says the condition made her feel like she was trapped in her own body. "Trying your absolute best to move and you just cannot, it is just an indescribable feeling. You feel like you're living in a nightmare. There were many days I thought my life can't get worse," she said. "I was scared I wouldn't ever recover from this. I'm in such pain throughout my body. I'm burning, I'm freezing. I feel like I'm being tied down. All those sensations were just like I was living in a nightmare. I have so much anxiety and the fact that I couldn't speak to anyone."

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The only body part she could move for a month was her eyes. Her mom and brothers would list the entire alphabet and wait for her to blink, so she could spell words, one letter at a time. "It just took a lot of patience from my brothers and mother and them saying the alphabet hundreds of times throughout the day because that was the only way I felt I could be a little sane," explains Vanessa.

She often asked them to play Christian music in her hospital room, because she says it brought her peace and had to ask them to do simple things, like scratch something that was itching.

Finally, after a month, she started moving her head and then her legs. It was time to strengthen her body through rehabilitation. Her mom transferred her from south Texas to TIRR Memorial Hermann in Houston, the same place where her beloved and late dad was treated when he was paralyzed.

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They had to face tough memories there but felt safe because of the care he received there. It's also how her mother had learned to use the alphabet to speak to him, with eyes only. Vanessa was ready for the challenge and to get back on her feet.

"When she came to the hospital, she was dependent for everything. She couldn't move any extremities. She was having problems with her vision, required a ventilator to breathe, required a feeding tube," says Dr. Lisa Wenzel with TIRR.

"Whenever Vanessa first came in, she was using a walker and couldn't even stand on her own without the walker and couldn't really even get up from sitting, because her legs were so weak. She progressed really rapidly and worked really hard," exclaims Joshua Resner, a Physical Therapist at TIRR Memorial Hermann. "She was very dedicated! So, by the end, she was standing on one leg, walking on treadmills, doing stairs, and not using the walker anymore. She did fantastic throughout her rehab."

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Doctors say symptoms of GBS often occur days or weeks after a virus and are rarely triggered after a recent surgery or vaccination. Vanessa says her doctors told her that a flu vaccine prompted her case of GBS.

"Getting the flu shot nine days before Christmas Eve somehow triggered me to get Guillain-Barré," Vanessa explains. Dr. Wenzel explains more about the rare occurrence. "The background rate for Guillain-Barré syndrome is about 160 cases per week, regardless of vaccination, and then the data with GBS are inconsistent across the board across flu seasons. If there is an increased risk of GBS, following flu vaccine, it's small on the order of one or two additional cases per million doses of flu vaccine administered," states Dr. Wenzel. Vanessa has been told she can never get a vaccine again.

Meanwhile, she's relieved to be back on her feet and enjoying a reunion with one of the physical therapists who helped make it happen. "To see Vanessa walk back in and tell some stories about what's been going on, is really encouraging that we were able to help make a difference and return somewhat back to normal life, so it's huge," states a smiling Joshua. 

"I'm only 23 and I went through a lot, so I hope there's nothing else this hard on my family," says Vanessa.

For more information on TIRR, click here. Tor read more about Guillain Barre Syndrome, click here.