My name is Vanessa Ryan. I’m a 24 year old single mother to a 2 ½ year old boy, and I’m from Peabody, MA and this is my GBS story:
I was diagnosed with Guillain Barre Syndrome when I was 23 years old on March 16, 2017. My son was only a year and a half years old.
I made an appointment with my PCP because I was experiencing a weird, concerning leg weakness that I’ve never felt anything like before. I was tested for vitamin deficiencies. When the tests came back normal, I received a call around 9 pm advising me to go to the emergency room to do more testing, just in case it was “worst case scenario, something called Guillain Barre Syndrome.” Normally, when people say things like “worst case scenario,” I think to myself that there’s no way it could happen to me, but i did a google search anyway. Since I had never even heard of this before, I typed “guyon beret syndrome” into google, but it knew what I was getting at. The results seemed promising, telling me that only 1 in 100,000 people suffer from GBS, and only in 30% of cases the paralysis goes past the waist. That was all I needed to hear to convince me that this was not the case. Unfortunately, I was proven wrong.
I made an appointment with my PCP because I was experiencing a weird, concerning leg weakness that I’ve never felt anything like before. I was tested for vitamin deficiencies. When the tests came back normal, I received a call around 9 pm advising me to go to the emergency room to do more testing, just in case it was “worst case scenario, something called Guillain Barre Syndrome.” Normally, when people say things like “worst case scenario,” I think to myself that there’s no way it could happen to me, but i did a google search anyway. Since I had never even heard of this before, I typed “guyon beret syndrome” into google, but it knew what I was getting at. The results seemed promising, telling me that only 1 in 100,000 people suffer from GBS, and only in 30% of cases the paralysis goes past the waist. That was all I needed to hear to convince me that this was not the case. Unfortunately, I was proven wrong.
My parents drove me into Boston, since we only live about 20 minutes outside of the city, and went to Beth Israel Deaconess Research Hospital emergency room. Immediately after explaining my symptoms to the doctors (still weak legs that were getting weaker), they seemed almost certain that it was, in fact, worst case scenario- Guillain Barre Syndrome. They proceeded to do the routine tests for GBS- MRI, CAT scan, spinal tap, etc. In between an MRI and a CAT scan that were only about 2 hours apart, my legs went from weak to paralyzed.
I was admitted to the neurology floor and started the IVIG treatment, which did basically nothing except make me feel awful (flu-like symptoms). I was under the impression that after the 5 days of IVIG treatment, I would be walking out of the hospital, but IVIG is a treatment, not a cure. By the third day, the paralysis ascended to my arms. At this point, the doctors found the cause of my GBS was a virus called cytomegalovirus (CMV). I was moved to the ICU on the fourth day, where they put in a feeding tube, and by the sixth day, I was no longer able to breathe on my own and I didn’t breathe on my own again for 50 days.
Back in the ICU, my parents didn’t leave my side, which was so important, but my anxiety was still at an all time high, despite all of the medication I was on. My heart rate was too high, my blood pressure was too low, I was taking about 30 medications at a time, I was paralyzed from my toes to my forehead (with the exception of shoulder movement and head nods), I was unable to breathe or talk, my temperature was not regulating so i was always hot, I barely slept, everything hurt all the time, I was eating through a tube, I was urinating through a tube, my body was basically shutting down but my mind was overactive, and the worst part was I was only able to see my son for a few minutes every few days, and sometimes just once a week. After 24 days in the ICU, 28 days total at Beth Israel, I was moved to Spaulding Rehabilitation Center, where their first order of business was weaning me off of the ventilator. It took 28 days of weaning before I was able to breathe on my own again.
During the first 2 weeks, I couldn’t keep anything in my body, even when there was nothing in it. Every time I was given tube feed, I threw it up, or it came out the other way. Even when there was nothing left to throw up, I still did. It basically felt like the stomach bug, but on steroids. Once I was officially off of the ventilator, the intense therapy began- 3 hours of physical and occupational therapy every day. The pain was excruciating from the beginning, and the therapies continued to add to the pain. However, my therapists were miracle workers- their positivity and upbeat demeanors were contagious and played a big role in my recovery. They encouraged having my son visit any time of day, whether we were in therapy or not, which was great, but since he was only 1 ½ years old, he really wanted nothing to do with seeing his sick mother lay in a bed. It was upsetting, but understandable, but what was even more heartbreaking was his confusion and anger towards me, his once inseparable partner in crime, for not being around for him every day. He was my number one motivation to get better.
Between May 8th and July 19th, I relearned how to brush my teeth, feed myself, use a manual wheelchair, wiggle my toes, wave my hands in the air like I just don’t care (ayye oh), apply my make-up, change a baby doll ( which is much easier than a real baby), walk with body weight support, then with a walker, then with a cane, then walk out of Spaulding with just my AFOs (braces around my ankles).
Now just a year later, I am back at the gym- running on the treadmill, doing squats with 25 lb weight (I used to squat 35 lbs before GBS, so almost there), dancing around the house, and most importantly taking care of and picking up my active 36 lb son, and spending every day with him.
In the hospital, I was over prepared for the residuals that come along with GBS, such as fatigue, numbness in toes, weakness, pain, etc., but something that I never even considered was the mental state that GBS could put me in.
Since I’ve come home in July 2017, I’ve been experiencing PTSD, anxiety, and depression. At first, I thought I was acting like a self-pitying, weak person, until I realized how normal this is. I was just recently evaluated and diagnosed with all of the above, which is extremely common after going through something traumatic, like GBS. Physically, I’m almost back to my normal self in just a year, and mentally, I’m getting there!
Since I’ve come home in July 2017, I’ve been experiencing PTSD, anxiety, and depression. At first, I thought I was acting like a self-pitying, weak person, until I realized how normal this is. I was just recently evaluated and diagnosed with all of the above, which is extremely common after going through something traumatic, like GBS. Physically, I’m almost back to my normal self in just a year, and mentally, I’m getting there!
