Cauda Equina Syndrome and The Benefits of Joining a Support Group

​Alone with Cauda Equina Syndrome

It has been almost two and a half years since I had surgery for Cauda Equina Syndrome.

I was hurt for nearly a year before I woke up one morning numb from the waist down and wound up in the hospital being prepped for surgery. I was told that I needed a spinal decompression or I would never walk again. I recall discussing my dilemma with the surgeon.

We talked about how long I was injured and that there would perhaps be permanent damage because of how long my nerve had been damaged. Seemed like a fairly normal conversation before surgery…I expected to get better.

I thought I just had a back injury and I thought that once I had surgery I would be out of pain and I would be on my way to recovery. I thought I would get better. I was wrong.

Surprise I was Wrong... Welcome to Cauda Equina Syndrome!

When I woke up from surgery I wasn’t in the excruciating pain that had plagued me for almost a year. But I woke up crying and asking “what did they do to me?” My legs didn’t work at all. They just flopped around on the bed and they had absolutely NO feeling. My whole back hurt. The pain, although lessened, was unbelievable. I also had saddle anesthesia and I had incontinence. My feet and legs were like two big balloons. I was sent home the next day in worse condition than when I went in.

I went home and got online and started researching my symptoms and all that kept popping up was Cauda Equina Syndrome. On my visit with the surgeon I asked the physician’s assistant if I had Cauda Equina Syndrome and he told me “yes, but it isn’t that rare. I also recall my snide remark on asking him “what search engine do you use?”

I now know what he meant by that statement. It’s rare to the medical community and to the doctors. They are missing the red flag symptoms of cauda equina syndrome in patients that are presenting themselves to the ER’s. I was misdiagnosed for nearly a year and many others had their red flag symptoms missed as well. 

On my follow up visits with doctors, I learned that they don’t know what Cauda Equina Syndrome is. I also could never get an answer for everything that was wrong with me now.

I was always on the internet asking the same question in fifty million different ways, but still not really learning anything. I joined the​ Cauda Equina Foundation support group and I found a lot of people that have the same thing as me and it was a big relief!

Learn From The Group Outside of Facebook

I learned that what I have is not just a bad back. I had a herniated disc that went on for too long and was misdiagnosed. The massive herniation had compressed my Cauda Equina nerve root and THAT is the damage that the surgeon was discussing with me. I have Chronic Cauda Equina Syndrome now.

I learned that I am not alone and that there are more people out there with the same thing and they’re all asking the same questions as me. It’s nice to be able to speak with others that understand what you’re going through when you talk about the heavy legs, numb feet, pulling wedgies out that aren’t in, pins and needles, along with every other crazy painful thing that our bodies suddenly feel.

Everyone genuinely cares for one another and right now that is a necessity for me because having a medical condition with little guidance available from the medical community is pretty overwhelming. Just knowing that others are running into the same issue brings a sense of balance back, because it is a horrible and lonely feeling.

The CEF Community Keeps Me In The Know

I became a #CESWarrior and joined their discussion and support group for cauda equina syndrome on www.Inspire.com. It is a safe and private discussion group. The people are all very friendly and they’re very supportive. I no longer feel so alone because I’ve found others that have what I have.

I learned I am not alone when it comes to going to doctors and they don’t know what you’re talking about. I also learned that some people have excellent health care and that’s how I learn about what is wrong with me when it comes to Cauda Equina Syndrome.

The good thing about a group is that you’ll find people at different levels in their recovery. Some people will have just had surgery like I did and then there are others that have had CES longer. We are all different and some of us are worse off than others.

I remember in the beginning I saw that someone had posted a question about what were they grateful for since CES. I can laugh at myself now, but I remember when I saw the question I was flabbergasted. I remember thinking how in the world could anyone learn to appreciate anything with this horrible syndrome? It took awhile, but I’ve learned. I have learned with the help of others to have a new outlook on life.

My questions were personal and at first I was afraid to ask, but on Inspire you are anonymous and can search any topic. Although I have Cauda Equina Syndrome, I can join other communities that pertain to my new life now, such as mental health or urinary issues. It’s nice to be able to find all of my answers on one website. I no longer have to look all over the internet.

What I really like is the fact that I can ask a question and someone will answer me. On the internet you can’t join a private conversation, because it’s out there for everyone to see. With Inspire it is private and I’ve learned so much from joining.

If you have been given the misfortunate diagnosis of Cauda Equina Syndrome, join us at CES.Inspire.com where your conversations and information are safe.