Cauda Equina Syndrome

Survival to recovery

The “Cauda Equina” is a nerve cluster that resides in our back between lumbar four and five. When this gets pinched by a vertebrate or a bulging disc through genetic or environmental factors bad things happen and it takes an expert surgeon to fix it. This site is about my journey from wiggling my big toe to jogging an indoor 5K.

Preface

August of 2016 changed my life forever. Like many people, I’d had “back problems” since an early age and experienced physical bullying and hazing that made my life miserable. As I got older, to treat my back problems I went to a chiropractor, I went to physical therapists, I went to sports therapists, everyone I could think of to diagnose and help fix my spine. None of them diagnosed that I had a spine nerve root compression even though I had sciatic pain and when I thought I was standing straight I was tilting to the side like someone with scoliosis.

Others Experience

Wasted Golden Hours

Abbott Northwestern Emergency Department

Spine injury survival is measured in hours and minutes. In my case, I knew there was something wrong but nobody could tell me what was wrong or how to fix it. Eventually, I went to Abbott Northwestern Hospital’s emergency room when I couldn’t urinate anymore and was discharged without any assistance. Dejected and with my bladder failing outside of the Abbott Northwestern Emergency Department I went home.

Abbott Northwestern Bladder Buster

After a short time, I tried again to find someone who would order an MRI scan for me. Eventually, I spoke with a nurse at Hennepin Healthcare (the county General Hospital) who chastized me for calling for an MRI and insisted on my admittance to Hennepin Healthcare’s emergency department immediately.

"Listen, you're a young man. If you can't get up to go to the bathroom you don't call looking for an MRI, you call 911. Now, do I have to do that for you?" 

With renewed hope that I’d get treatment I put on my pants and called Emergency Medical Services for transport to Hennepin Health.

Hospital Admission

After being rejected by Abbott Northwestern Hospital, finally I had EMS on their way and I was being admitted to a Level 1 Trauma hospital Hennepin Health. The process of getting there was painful but after passing out from the pain I woke up drugged up and if it wasn’t for the catheter and lack of feeling below my hips I’d have felt somewhat normal. I was taken to have an MRI (finally!) and it confirmed that I had a spinal nerve root compression at the cauda equina nerve which was compressing my spinal cord and I was immediately preped for surgery. Luckily, I had an amazing surgeon and when I asked her what she did for fun she smirked and replied with a grin “Brain Surgery.” Shortly thereafter I was moved into the Operating Room.

Hennepin Health HCMC

Post Operation

After the successful discectomy and hemilaminectomy I slowly regained consciousness and I had no sensation below my hips. Instead of fearing that I was a paraplegic I thought about the movie Kill Bill and Uma Thurman’s role as Beatrice waking up and having no sensation in her legs and using pure-will to heal ( local copy ). The surgeons, (U.S., P.D., T.B., and W.G.) were amused (but thought I might be hallucinating) as I accepted the lack of mobility through the view of a movie. For the next few days I was kept in the critical care unit and after three days I was finally able to wiggle my big toe.

Beginning Rehabilitation

After I was discharged from critical care, my initial rehabilitation was at the Knapp Rehabilitation Center attached to Hennepin Healthcare. This two week program was extensive and grueling, every day I would do at least three hours of therapy including psychological evaluation, physical exercises, praciticing using a walker and cane, even playing the guitar. I will admit that it was at times overwhelming, but in the end a positive experience that put me on the right track.

In order to leave Knapp I needed to prove that my home was ready for me. Due to the magic of online shopping I was able to get a shower stool, walker, a cane, and other assorted items I needed in order to continue my rehabilitation.

My wife is the true hero of getting me home, not only did she setup the house so I could come home but knowing that I would be sitting an extended amount of time purchased me a reclining chair that I spent the next year in almost exclusively. Without some semblance of comfort my recovery would have been significantly extended.

Rehabilitation at Home

I spent weeks researching neuropathy, trauma neuropathy, diabetic neuropathy, neuropathic hands, neuropathic feet, neuropathic genitals. The accepted explanation for how nerves grow is similar to sugar on a stick. What they don’t tell you is that nerves don’t grow up or down, they regrow in patches. I had about 10% sensation below the waist and it was enough to go from my comfy chair to my walker and either to my bedroom or the bathroom and back to the chair. As with Beatrice in Kill Bill I spent most of my time using pure-will to make my muscles move.

Types of Neuropathy

When you have lost all muscle memory it is hard to teach your muscles to move again. Where I had full neuropathy, I accepted that it was about as bad as it could get and that I might as well go Mad Scientist and find methods to regain use of these muscles. The most successful method was using a TENS (Transcutaneous Electrical Nerve Stimulation) Unit to help build pathways along the previous routes and new ones. The muscles were essentially dead, so it was time to electrify them to regrow, just like Dr. Frankenstein’s Monster.

Young Frankenstein Electrified

As soon as I could I started loading myself with all the things my muscles and nerves could need to regrow that meant a daily multi-vitamin with large amounts of Vitamin’s D, B12, B3, B6, E, A, C, B2, and B9, plus extra Vitamin E and Omega-3 Fatty Acids via Fish Oil capsules and B12 and Folate by examining the methods people use as Body Builders, since I was effectively rebuilding my body.

Rehabilitation to Growth

My methods paid off and they paid off well. Within three months I had enough control of my muscles that I could walk so I used that accomplishment to start indoor jogging in a little circle in my bedroom. Starting with a small shuffle, I made a playlist of positive up beat music and used that as my time counter. Eventually, I added more songs and eventually was able to jog a kilometer, then a mile, then 3.12 miles or 5 kilometers. Through a combination of balancing exercises, two legged and one leg squats and eventually planks I was able to gain more mobility and more sensation.

Anecdotally I was able to observe the areas that were regaining sensation due to leg hair. The patches that had hair were partially repaired and non-neuropathic, the areas that did not regrow hair were fully neuropathic. To this day I still have about 5% neuropathic regions that are without hair.

My physical therapy became a daily routine and I added more types of exercises that have kept my back muscles strong and build my leg muscles. The latest being a row machine that provides full body exercise and works a wide range of muscles that are in need of repair or toning.

Continued Growth

Physical therapy and exercise has become a part of my life now. Before my surgery I was unable to do most exercises, now my personal challenge is to find new things to add to my routine. The biggest challenges that I’ve faced are the mental ones, the feeling that if I don’t exercise for a day I’m somehow letting myself down, however that is irrational and I know it but I still feel it. The fear of pushing myself too far or exercising too much, again, irrational.

Thank you

Thank you for your time reading this experience. I hope that you can also read the experiences in the preface above and I hope that this helps you or someone you know.

I can be found on Mastodon, Twitter, or through my personal biography.

Disclaimer

I’m not a doctor, this is not medical advice. I became an autodidactal scientist through the experience of controlling my recovery post surgery to correct Cauda Equina Syndrome.

Latest edit: 
2022-06-12 T 16:08:33.386716 Z
MJD: 59742.67260
Diebus ex quo salvatus fui: 2127