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Cauda Equina Syndrome: Pain, symptoms, management and prognosis
Spine Health | Last Active: Apr 18 10:19am | Replies (60)Comment receiving replies
Hi Everyone, I was directed to this site today by John, a consultant with the Mayo Clinic. I have done my own research on Cauda Equina Syndrome. I just left a for profit HMO where I couldn’t get any attention to my spinal chord injuries from MVA in 2017. I have herniated, fractured, blown out stuff in every area of my spine. If I don’t hold my head in a certain position, I can’t breathe. I have bilateral carpal tunnel so I can’t hang on to anything. From day one post accident, I had difficulty urinating. I told anyone wearing a lab coat that I couldn’t urinate. Then I started feeling like I was sitting on a medium sized russet potato. Although my vaginal area and rectal area felt like they had been shot up with novocaine, the lump sensation was sending shots of pain down the back of my legs. I also had these shock like symptoms like you see when someone is getting defibrillator shocks to start their heart. They would raise my legs off the surface violently. For the icing on the cake, neuropathy 24/7. The only treatment I got for that was one cortisone shot in my right femeral nerve. I couldn’t get the other leg or the sciatic nerves done at the same time. I thought it was rather useless
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@msmunro I wanted to let you know that John @johnbishop isn't a consultant with Mayo Clinic. He is a Mentor like me, and we are volunteers with patient experience. While we are experienced with our own medical care and that of family members, we are not medical professionals.
The symptoms you are mentioning here can be from spinal cord injury or spinal cord compression. I did have spinal cord compression and was generating an electric shock down my entire body when I bent my neck. Difficulty urinating can be from spinal cord compression and it can progress to incontinence that can become permanent. That can be from compression in your neck. Difficulty using your arms and your grip can also be spinal cord related or related to the nerves exiting the spine that go to the arms. You may have that in addition to carpal tunnel. I had this too from spinal cord compression in my neck, carpal tunnel and thoracic outlet syndrome affecting my arms.
I am concerned about your comment about difficulty breathing unless you hold your head in a certain position. This is significant enough to warrant an emergency room visit, and at the very least, make a call to the spine surgeon you are waiting to see and let them know about the breathing issue. They may have some emergency patient appointment slots held in reserve or perhaps they will send you for imaging right away. The Phrenic nerve exits the spinal cord around C3 and travels downward to the lungs to assist with breathing. If you are having a spine problem that is restricting this nerve, it can cause problems.
I know you have a lot going on now. With mentioning the HMO insurance that you previously had, it seems that they didn't provide diagnosis and care that you should have had based on how advanced your symptoms are. Since you've mentioned some imaging reports, they must have had some knowledge of your condition if that was done under the HMO policy. Perhaps you were misdiagnosed? You may have a case against them if you asked for care and were not given medical care for your condition, and you are now worse because of it. You may want to get copies of imaging and reports as you go in case you need that to seek secondary opinions about your case. It seems pretty urgent to me, and I hope your consult will bring some hope for a recovery.
Take care. Will you make the call to your specialist about your breathing?