Who am I?
Hi, my name is Ronni, I’m 34 years old and I’m born and raised in the United States. I got diagnosed with Craniocervical Instability last year.
I was a successful hairstylist for 10 years, owned my own salon but I can’t do that work anymore. I love art, writing, singing and playing piano.
How I got diagnosed
I was given every migraine medication under the sun (none of them worked). I was gaslighted by my old neurologist. When I was waiting for my appointment with Dr. Francomano I told her they suspected I had EDS and she said, “I don’t think it’s that.” and then when I asked her to order an upright MRI. She said, “You’ve already had so many scans. I don’t think it’s necessary.” Dr Francomano ordered an upright MRI without me even having to ask, and obviously I do have EDS and CCI.
How my CCI started
I was out running errands and a headache came on. I thought maybe I hadn’t had enough water or food for the day so I just grabbed my water bottle and shrugged it off. But then the headaches started coming back every day. They’d just come and go at their leisure.
After about 2 weeks of this, my headache set in one day and never left. I tried for 9 days to get it under control at home but nothing would touch it. I finally went to the ER and the pain meds they gave me barely touched it so I was admitted overnight, which turned into a 16 day hospital stay where I had a litany of scans and tests and medication and they couldn’t figure anything out.
One day while I was in there, my PCP came in for rounds and he asked me if I’d ever heard of Ehlers-Danlos Syndrome. I hadn’t. But he’d been doing research on his own time because I’ve had a constant stream of issues over the years and no one has been able to figure out why. For instance- I had both my hips replaces in 2018. My hip joints were complete goners and they couldn’t say why it happened. My back issues started getting worse, and I ended up having a nerve ablation in my lower spine, which helped immensely.
So, that led to me getting a referral to see Dr. Francomano, which took nearly a year to get to my appointment with her. It was well worth the wait and my entire life makes more sense now.
My symptoms are, nausea, POTS (worsening), severe constipation, limb weakness (primarily in terms of walking or being on my feet for a while). The head and neck pain, nausea, and POTS are the most debilitating. Everything other than the head and neck pain and limb weakness I’ve been experiencing my entire life.
Treatment for my CCI
I’ve tried a litany of medications, shots, physical therapy, Aspen Vista collar, topical stuff. The neck brace is the thing that helps the most unfortunately.
My life now
I was a hairstylist for 10 years, even owning my own salon. I was wildly successful. I can no longer do that work, but I worked hard to teach myself marketing skills and tech skills and now I’m a contractor for a startup as their Marketing strategist/coordinator. I work part time.
I can’t do most of my old hobbies like running, dancing, working out, etc. It’s been really tough as I am a very physical person. I always used physical activity to help me cope with my mental health issues and such. I loved to exercise, go on walks, swim, you name it. I also traveled a ton. Of course Covid put a stop to that but since things took a serious nosedive for me starting in Feb 2020 (when I was hospitalized), it’s been really jarring to say the least. I miss my old self…
I cope by constantly trying out new activities in search of ones I love. The Swell Board was one of those things. It’s a balance board and zero impact as long as you don’t fall off, lol.
In regards to my friends and family; I have a very strong support system. They are extremely helpful and supportive. I’m lucky!