Because it is rare, some who develop Cauda Equina Syndrome are the victims of medical malpractice. Anecdotal stories abound, along with some documented ones, of CES being brought on or made worse by malpractice. Given the laws covering malpractice in varying jurisdictions and the variability of each person's CES, no one can be certain if a case exists or how it will turn out. This is my story. It has been reviewed by 2 Ohio attorneys who have experience in Cauda Equina Syndrome malpractice cases. You won't like what it says about our legislatures, legal system, and of course doctor education.
My Cauda Equina Syndrome started with my injury. Within 10 hours of the onset of my CES symptoms, I was in an Emergency Room in Westerville, OH. Upon waking on the morning of Feb 12, 2013, I found that I not only had the severe back and sciatic pain of the night before, but now I was NUMB from the waist down! I could not void my bladder nor defecate. I could not move my feet up nor down and without feeling in my feet and ankles, I could not balance. These are all classic symptoms of Cauda Equina Syndrome. Fortunately we had a wheelchair (and some adult diapers) and just after 10 a.m., I arrived at the ER in my wheelchair.
We had been told that this ER was fast and efficient, and it was close to the office of the physician who suspected Cauda Equina Syndrome and sent us to an ER (with specific directions to have an MRI done.) Immediately upon arrival at the ER, I was wheeled to an exam room and I transferred from my wheelchair to the exam table. My vitals were taken and the male nurse assigned to me came in for the initial assessment. He stood about 5' 4", about 150 pounds, a pleasant. individual who began asking about my symptoms. With my mentioning Cauda Equina Syndrome, he asked if I was incontinent. I said, "No. I can't go!" He then asked me to stand up. I told him I couldn't. I knew I would fall right over, not because my legs wouldn't support me but because I had no balance. And I knew that his small frame would be overwhelmed by my 6 foot tall, 325 pound body. No way he can stop me from falling over if he doesn't prevent it to start with. I told him so, yet he insisted. The results were predictable. On standing up, I immediately began tilting (away from him, naturally) and over I went. The nurse could no longer stop it. The rolling chair in front of a fixed desk was in line with my movement. I was able to grab the back of the chair and as it rolled into the desk, it locked in and I was able to stop my fall. He asked me again if I was incontinent. I responded as I had before. That concluded the initial exam.
A short while later the nurse came back in. He told me that the ER doctor had ordered an MRI for me. The MRI machine was located at the other end of this Ohio Health Medical Campus and did not have an opening for me for almost 4 hours. I had to wait, on that exam table, in pain, until then. The nurse did check on me a couple of times, one time bringing me a couple of replacement diapers as my bladder was so full it was leaking (I still couldn't go!) Thankfully, my wife had some snacks in her purse or I would have been without food for over 10 hours that day - not good for a diabetic! No one ever asked if I was hungry, even though I was there over lunch time. Around 2:15 p.m. the nurse came and took me to the MRI machine. As we wheeled in, I could see that the machine was an older type that was very small. I did not think I would fit. They told me the test would last about 45 minutes and that I needed to lie as still as possible (easy to do when you rate your pain at a 10 and you are not medicated - NOT). I was put into the machine and I did fit, however, as I tried to breathe,
I could not fully expand my chest to take in a breath. I could get no more than 1/2 a breath before the constriction of the machine prevented further expansion of my chest. After several partial breaths, I knew that I could not breathe this way for 45 minutes. I told them so and I was removed from the machine - it was just a little too small. As I was wheeled back to the ER, the nurse told me about the larger machines and the open MRI machines in the area. He said, "We can get you into one of those. We'll see what we can do about that." I was returned to the exam table to wait. A half an hour passed with no one checking on me. Then the ER doctor arrived. He told me who he was and that he had been overseeing my care. He then asked me twice if I was incontinent. Again I responded with, "Not incontinent, I can't go!" Then he said, "You do NOT have Cauda Equina Syndrome. Since we are an Emergency Room and your case is not emergent, we can not refer you to an outpatient MRI facility. I'm going to give you a prescription for Percocet and a referral to our group's back specialist, for a first available appointment. He can order an MRI for you." With that he was gone.
Shortly, a person came in and told my wife and I that 2 more people would be coming in, one with the discharge papers and another to wheel me out of the facility. About 3:15, the woman with the prescription and discharge papers came in. The discharge papers said I should come back to the ER if any of my symptoms got worse OR if I developed any of these symptoms:
"Increased pain, abdominal pain, fever, difficulty controlling bowel/bladder, or any further concerns."
That was on one page of the instructions.
Another page stated this:
- Loss of bowel or bladder control (you soil of wet yourself).
- Weakness of inability to walk or user your leg(s) or arm(s).
- Pain not relieved by pain medication.
- Fever (temperature over 100.5 F) or shaking chills.
- Severe pain that settles over one particular vertebrae (bone) in your back."
I laughed when I read these! Well as much as one can laugh while in the worst pain I've ever felt. I already had most of these return or get immediate attention symptoms!! The woman said that these were just generic discharge instructions for herniated discs and not specific to me.
Most medical literature states that decompressive surgery must be done within 24-48 hours or the outcome is far worse. Once those 48 hours are gone, you're pretty well going to wind up disabled for the rest of your life. So says the literature. I can tell you right now that that is not always the case as I'm living proof, but that is another story.
Other medical literature says that the surgery must be done within 6-12 hours to effect the outcome. Still other studies say that time to surgery doesn't affect the outcome. Why such divergence? Cauda Equina Syndrome is rare. No one knows exactly how rare, but my research of available estimates would indicate no more than a few hundred new cases a year in the U.S.
It ultimately took 2 weeks for my surgery to be performed. The surgery at Riverside Methodist Hospital in Columbus, OH went well, I went through Acute Rehab there for a week after the surgery. I then went through 15 sessions of Physical Therapy at NovaCare in Westerville, OH. My outcome is that I have some normal feeling again in my waist area somewhat in my thighs and in my shins. I have painful tingling in other parts of my thighs and in my feet. My calves are mostly numb unless pressed upon - then I can tell the leg muscles are cramped up, but the good part is that I can't feel the cramps. I do stretches several times a day for calves and hamstrings. I use vision for balance and the leg weakness has diminished, i.e. strength has returned, to the point where I can walk about 500 feet with a cane and about 125 feet unassisted. Bowel and bladder functioning is that they function, I just can't control them or tell when I have to go - I get surprises. I try to go on a regular schedule to avoid surprises and I can tell most of the time when my bladder is getting close to the leaking point. I get a minute or two of warning on bowel movements most of the time, but I don't generally feel them.
In other words, my delayed surgery should have left me disabled, in bed, cathing myself, and on pain killers. I work full time, am ambulatory over short distances don't need cathing, and am on mild, non-narcotic pain relievers. In short, my recovery has been great. One of the best. However, I still have a life of everyday being a physical challenge and struggle. That won't change, but that's okay (subject of another story.) I did a lot of wondering if I would have gotten back to normal, or almost normal, had I had surgery quickly, within 48 hours. Feeling that the care I received from the ER doctor was negligent, I took everything to a Columbus, OH attorney. He called on another attorney in Cleveland, OH for a second opinion.
They both agreed that malpractice was committed, that the ER doctor "dropped the ball" as one of the attorneys put it. However, due to the standards for malpractice claims in Ohio, both attorneys felt that proving that the doctor's negligence greatly affected my outcome (my really much better than predicted by the facts outcome) would be an insurmountable challenge in court. Since that is the portion that really drives the dollar amount of any settlement, and thus the attorney's fees, my remarkable, blessed recovery makes pursuing the malpractice and negligence of the ER doctor not feasible. If I had not pushed to recover, I could have gotten a nice settlement... I'll take my recovery anytime!
So the summary is that the laws in Ohio say that what I've been through, and will go through the rest of my life, amounts to nothing. Our legal system is such that only lucrative cases are pursued. And our medical system does not educate doctors, nurses, and first responders adequately nor does it keep them updated. Had the ER doctor realized that bladder retention and not only incontinence is an indicator, we would have been golden. The info regarding retention is widely available on the internet and in medical journals.
To discount the correct diagnosis on the basis of 1 symptom is not what I want in a doctor. I feel that justice has lost in this one. However, I am at peace with this as I relate in this post - My Blog Title Changed but Still About Cauda Equina Syndrome and Me.