Cauda Equina Syndrome doesn’t define me!

I will never let cauda equina syndrome have that power!

However, I truly had no idea how much I took for granted until cauda equina syndrome struck me down. From mid-December 2018 to mid-January 2019 my problematic back had been playing up. Sciatica is not new to me. This is because I have endured ongoing bouts of it since mid-2009. It would strike every couple of years. As a result, I never thought much of it aside from getting pain medication from my local GP.

Unfortunately, this time it was something different. On the 14th of January, I experienced the worst pain I had ever felt for the first time. Now, before I go any further, I’d like to tell you that I have a high pain threshold. I have overcome cancer, a stroke and a serious car accident. Therefore, I know high levels of pain and this was off the charts!

It happened innocuously enough. I was picking up my partner’s (Clair) dog’s bowl. It was his dinner time. I felt an absolute crushing sensation behind my left thigh. It completely overrode the sciatic pain from that side of the body. It took me several moments to regain my composure and I struggled to feed the dog. The pain was still unbearable so when my job was done, I hobbled to bed and had Clair call an ambulance.

Life BEFORE CAUDA EQUINA SYNDROME

Before I delve into my story, Clair requested that I provide some background. Her point is to demonstrate that Cauda Equina Syndrome isn’t a discriminatory issue – it can happen to anybody.

At 16, I was diagnosed with chronic fatigue syndrome. At the end of that year several friends were killed in a car accident. A year and a half after this my father passed away unexpectedly. Three months afterwards my mother took ill with a form of psoriasis. Her autopsy revealed that at the time of her death it was comparable to third degree burns to over 66% of her body. As an only child, I took the responsibility to provide 24/7 care for her for over three years.

However, as many serious health issues and tragedies that I’ve overcome, I have had a lot of opportunities come my way. Not only did I work in professional sports in the United States but I had the privilege of doing so in Australia as well. Academically, I hold three university degrees and am a highly qualified marketing-communications professional. As a result, I have been successfully employed with a number of the world’s most recognizable brands.

I enjoy contributing to the community whenever possible. For example, volunteering at the 2018 Gold Coast Commonwealth Games. Additionally, I managed a PC gaming website where I collaborated with developers, publishers, and other tech companies to provide software and hardware to under-privileged students.

I am passionate about sports. Carlton in the AFL and Portland in the NBA. I love music (Bon Jovi, U2, and P!nk), movies (Star Wars), theme parks, markets, animals, and much more!

I have never been married; however, I dearly hope Clair will marry me one day! It’s her and her son that are my happy place and I love them both dearly.

Ipswich Hospital

Returning to January 14th… The ambulance crew were beyond incredible. They quickly recognized that I was in serious trouble. They gave me Methoxyflurane – a high level inhalable medication used to quickly reduce pain following trauma. This enabled them to load me into the ambulance and get me to hospital.

After the pain medication began kicking in they took a lot of details from me. In retrospect, I am amazed at the amount of information they took. Their communication was of the highest quality. Because of what my mother endured I have a fear of hospitals so for them to get the process underway while transporting me to hospital was important for my personal wellbeing.

Unfortunately, the experience at the Ipswich Hospital was less than stellar. Unfortunately, I was not deemed to be an emergency case – immediately – and was eventually wheeled into the emergency waiting room. I was there, in agony, for several hours. Finally, at approximately 2 AM I was wheeled into a triage bed area, given minimal testing and collapsed into a deep sleep due to the pain.

I was discharged the following morning. This was much to the chagrin of an ambulance driver who had witnessed my agony the night before when her colleagues wheeled me in. She attempted to argue with the doctors that I was in no condition to be discharged and should be shipped to another hospital who were better equipped to provide care for me.

Sadly, the doctors disagreed with her. I could not even bear my own weight. Therefore, she got me a wheelchair and helped Clair get me to Clair’s car so I could go home and be put immediately to bed.

Why Ipswich Hospital Failed Me

I need to be up front and tell you that I have initiated legal action against the Ipswich Hospital. Sadly, because of their substandard of care I have been left with a permanent disability – cauda equina syndrome – that could have been avoided. This is because they were unable to diagnose me as they lacked an MRI machine at the time. Additionally, they failed to transport me to another hospital who could have performed a scan. They also never performed a scan on my bladder to discover the fact that I was retaining urine.

Thankfully, for others, the hospital now has a license to operate an MRI machine. This came into effect a month following my stay. I am delighted with this news as it represents tremendous progress for the region and it is my hope that my experience will not be repeated in the future.

What the hospital did was wrong. I was discharged on the advice that if things got notably worse that I should attend another hospital and seek an MRI there. They did not answer pivotal questions that I had and I feel as though they dumped me out more quickly than it took them to see me. My questions were simple.

What is notably worse than the worst pain that I have ever experienced?

What is worse than being unable to bear my own weight?

How was I to know what I was facing?

At this stage the words “cauda equina syndrome” were completely foreign to me.

Clair and I felt like we were clutching at straws. I spent the next 36 hours bedridden. My symptoms nor the pain were improving but they weren’t showing any signs of deteriorating. I was unable to walk, retaining urine and was severely constipated.

A Second Hospital in 48 Hours

The 16th of January is my birthday. 2019 was my first with Clair. She lovingly slow cooked a roast lamb for my special dinner. I forced my way down to her dining room to eat dinner with her and her son and the cake she also made. It was delicious but we knew that I was in immeasurable trouble.

I made my way back to bed after dinner. Just as I was about to lay down, I felt the same excruciating pain for the second time. This time it was in my right leg. I rang for another ambulance immediately.

The ambulance drivers were going to return me to Ipswich. However, upon hearing my horror story, they gained clearance to take me to another hospital. Upon arriving at QE II I was left in a little hall way near the emergency room. It took several hours for a bed to be assigned to me. Throughout this time, I was unable to sit down so I tried laying on the floor. As a result, I was repeatedly told off yet the staff were unable to understand how helpless I was.

Once I got a bed, I was given medication and advised to sleep. At this point I couldn’t argue so I crashed out again and hoped that I wouldn’t be discharged in the morning.

Fortunately, they took me to MRI at about 9 in the morning. The MRI along with bladder scanning revealed the devastation of my injury. My bowels, bladder and nerves in my legs were being crushed. This was a result of spinal stenosis and a compression of my L4-L5 and S1. Without emergency surgery I would either die or become a paraplegic. It was a race against time. Time that thanks to Ipswich Hospital was already running out.

Princess Alexandra Hospital

The QE II Hospital does not have a spinal unit. Therefore, the decision was made to transport me to the Princess Alexandra Hospital. I was in shock by this stage. My mind was racing. I was terrified of what was about to happen. Finally, I was loaded up on medicine designed to empty my bowels and bladder and it wasn’t working. As a result, it combined in taking me longer than it should have to get into an ambulance.

By the time that I arrived at the PA Hospital I was still yet to be advised that I had cauda equina syndrome. The on-duty doctor told me that I required emergency surgery but did so in such a way that it exacerbated my phobias. Consequently, I was unwilling to have a catheter insertion.

I excused myself to go to the bathroom. From there I reached out to friends who are medical professionals in North America who work on spinal injuries. They helped me by providing the advice that I needed. They assured me that the surgeon and doctors who would perform my operation do similar surgeries every day. Therefore, while my surgery was new to me it was not their first rodeo.

When the morning lead doctor came on duty, I was ready. He told me that I could have the catheter inserted after my anesthetic. He echoed the sentiments of my friends and had me sign my consent forms.

The Surgery

Ultimately, despite the delay I was the first surgery performed at the hospital that morning. My surgeon was Dr Kate Campbell who I have since been informed is Brisbane’s pre-eminent surgeon.

Despite the L4, L5 and S1 regions of my back all combining to create the issues it was determined that I required an L4 discectomy and laminectomy.

A discectomy (also called open discectomy, if done through a ½ inch or larger skin opening) is the surgical removal of abnormal disc material that presses on a nerve root or the spinal cord. The procedure involves removing a portion of an intervertebral disc, which causes pain, weakness or numbness by stressing the spinal cord or radiating nerves.

A laminectomy is a surgical procedure that removes a portion of the vertebral bone called the lamina, which is the roof of the spinal canal. It is a major spine operation with residual scar tissue and may result in postlaminectomy syndrome. Depending on the problem, smaller alternatives, e.g. small endoscopic procedures, without bone removal, may be possible.

The surgery took several hours and was a major success. The disc compression was eliminated. Aside from the associated pain at the wound site I was immediately free of sciatic pain. I could not possibly be more thankful to Dr. Kate Campbell and her team of medical doctors if I tried. I truly appreciate her expertise and ability as a surgeon and wholeheartedly recommend her to anyone local who requires back surgery.

Post-Surgery

Following surgery, I was transported to the spinal unit for observation and follow up physiotherapy. Prior to surgery I was advised some patients are able to go home on the day of surgery. I wasn’t so lucky. In fact, I was in the spinal unit from about lunch time on the Friday through to the following Thursday. Admittedly, the last 24 hours was my fault.

I had never had a catheter before. Therefore, combined with my fear of needles I was scared of the process to remove it. I never had a need to worry. The removal process is over within a matter of a minute and I did not even feel it.

The hospital staff were fantastic. The nursing team were all friendly, happy to have a chat when they weren’t busy and made me feel comfortable. Despite my fear of being bored I was able to keep myself entertained thanks to the Australian Open tennis on television, books and games on my mobile phone.

The ongoing physiotherapy sessions were probably the most painful yet rewarding experience. I was able to walk around the spinal unit without much support relatively quickly. This began building my confidence in my back again. Several doctors and nurses had told me about cauda equina syndrome and were surprised that I was able to walk – some people become paralyzed due to the nerve damage.

Otherwise, post-surgery in hospital was a lot of bed rest, food and relaxation.

My Rehabilitation FROM CAUDA EQUINA SYNDROME

My rehabilitation from surgery looks and reads very similar to case studies that I read. I find solace in this because it allows me to know that I’m not a unique case – there are other people who have done this before.

About a month after surgery I began doing physiotherapy sessions with a physio at the Ipswich Hospital who taught me a lot of exercises to help rebuild my core. My GP got me to do additional physio sessions with another physio which helped reinforce the lessons the hospital-appointed physio taught me. Finally, the hospital-appointed physio transferred me to a physio that specializes in bowel and bladder issues. This has so far proven to be beneficial.

I have also had my six week and three-month surgeon checkups. I suspect I will get a notification for a half yearly checkup soon. Additionally, I am on a waiting list to see a urologist as well as a dietitian who will steer me in the right direction in relation to those issues.

Ongoing Effects of Cauda Equina Syndrome

I soon found out that just because surgery is successful it does not mean that there will be no ongoing issues. Further, doctors do not know what those ongoing complications will be. This is because there are no two identical cases of cauda equina syndrome. It depends on how much damage was done to the nerves and the individual’s capability of recovery. Consequently, everybody is different.

What case studies tell us is that people who study from cauda equina syndrome have a number of potential issues. For me, these include (sourced from my previous What is Cauda Equina Syndrome? Post):

Various levels of ongoing permanent and/or chronic pain Neurogenic Electric shock type pain from stimuli Pain felt in areas of numbness Burning type sensations Pins and needles

Insomnia and inability to sleep at night

Weakness in legs – trouble walking – loss of motor skills

Loss of ability to maintain employment

Bowel and bladder incontinence

Mental health complaints Depression Loss of self-esteem Hopelessness Loss of independence

Loss of social life and standing

Relationship strain

Loss of sexual function and impotence

These ongoing complaints are my reality. However, before I delve into them on a more detailed level, I want to tell you that in many ways I feel that I am one of the luckier cauda equina syndrome survivors. I contribute – or try to – to many of the on line groups dealing with cauda equina syndrome. There are people in these groups who cannot walk and who suffer from immeasurably greater amounts of pain.

Despite understanding how lucky I am compared to others; I also recognize that much of this was avoidable. Time is of the essence when it comes to disc compression and nerve damage. Had I received better care from the beginning I would have saved more time and had less damage.

Warning

The discussion that follows contains detailed information regarding my own personal health battles following surgery. Some people may find what I have to say challenging and disturbing. Therefore, reader discretion is advised.

Ongoing Permanent and Chronic Pain

Neurogenic and chronic pain continues nearly six months post-surgery. However, the initial sciatic pain is gone. The area where I feel the most consistent pain is in my feet, legs and backside. This is a combination of the damage and the healing of the nerves.

First, the good news. I have not had sciatica pain since surgery. Unfortunately, my chronic pain is neurogenic. I first noticed this in hospital – my feet are much more touch sensitive than they ever were before. For example, I always have something on my feet (e.g. flip flops, slippers or shoes) unless showering. Touching the floor (be it carpeted or tiled) gives me immediate pain.

Additionally, it hurts to bend, twist, and stretch. I have listened and followed all advice that I was given in regards to movement. However, six months post-surgery I have minimal movement with these key motor skills.

My pain levels vary but an average day would be between a four and a seven out of ten. However, I try to avoid using pain killers as much as possible. This is because they are addictive and their effect weakens over time. Secondly, I want to be able to notice the levels of pain that I am in so that I can notice improvement or decline.

Bladder Issues

Bladder and bowel issues are the bane of my existence! Prior to surgery, I had been recorded as retaining between 1.5 and 2 liters of urine in my bladder. A normal adult bladder should retain no more than a liter before you empty it. As a result, my bladder had bloated and distended.

The good news post-surgery is that I am voiding my bladder very well. When I need to empty it, I can do so successfully. Unfortunately, ever since my catheter was removed I have leaked urine. Sadly, my doctor believes it doesn’t match a typical type of incontinence (e.g. stress or overflow) – I just leak.

My leakage was a huge issue after leaving hospital. Regardless of the bed that I slept in, I wet the bed consistently throughout my sleeping. Prior to surgery I was never someone who had night time accidents. Because my nerves are still ‘asleep’ I never get the sense of needing to go.

I went through every brand and type of night time ‘adult diaper’ that I could find. Sadly, nothing worked. Thankfully, I discovered Tena’s overnight pants. They are amazing! I have only wet the bed once in the almost 3-months of using them and that was when I had a virus. I am now no longer scared of going to bed with my partner.

Throughout the day I have issues with leaking as well. I now wear incontinence diapers or pads. Additionally, I have a constant mental need to use the bathroom. I literally spend hours there every day! I don’t like wetting myself and though I don’t often feel it I can sense the heaviness of the diapers. Unfortunately, the costs of these diapers are expenses and the impact on my budget is noticeable.

Bowel Issues

Sorry for TMI here. However, my last poop prior to surgery was on the Sunday (13th January) evening. When I was at the QE II (17th) the nurses gave me an edema and laxatives. Sadly, it only resulted in drips and drops of poop. It took until the Tuesday after surgery (22nd) before I had my first bowel movement. Honestly, I’ve never seen as much poop in my life. I felt like a horse at the show grounds!

Unfortunately, I somewhat wish I could poop like that today. I have had non-stop issues with my bowels and my toileting routine since discharge. Doctors strongly advise not to overuse laxatives and other forms of bowel medication. This is because they are addictive and you can become dependent on them for future release.

My biggest problem is constant constipation. I try and eat a high fiber diet because they aid bowel movements. I avoid foods and drink that are known to bind you up. However, as my specialist has educated me, my issues are not necessarily the type that can be cured by diet. This is because the nerve damage prohibits my bowel from working as it should.

The negative consequences of having a dysfunctional bowel aside from constipation is that I have periods where my bowels will self-evacuate. This means that the excrement transforms from being a hard mass and becomes liquefied and ends up in my pull up.

As a result of my bowel issues I have learned to use techniques such as digital stimulation. However, this is not foolproof and has negative consequences.

Insomnia and Inability to Sleep

I have never been a good ‘sleeper’ as an adult. This stems back to taking care of my mother from the ages of 18 to 22. It is seemingly impossible for me to get into a consistent routine for more than week or two at a time.

Unfortunately, my sleep pattern has noticeably deteriorated since having cauda equina syndrome. I suffer from nights where all I can do is sit on the toilet and pray for a bowel movement. Other nights I am in such discomfort and pain that the best thing for me to do is to work on the computer, play a video game, watch television or read a book.

Although I wouldn’t classify myself as an insomniac, I do find it difficult to sleep. Thankfully, once I get to sleep, I generally stay there until waking up between four and eight hours later. I take the wins when I get them! Regardless, this is something that I would like to improve so as to increase my chances of getting and retaining employment whether that be working from home or otherwise.

Loss of Sexual Function and Impotence

The doctors and nurses prepared me for the bad news. “Rick, you’re not going to be able to have sex for weeks, perhaps even months after surgery. In fact, you may never function sexually the same way again.”

Let’s be honest here. Sexual function and intimacy are important components of a modern relationship. This is especially the case when you’re 39 and madly in love with a 34-year-old who feels the same way about you.

Without being too descriptive – that stuff’s private – the sexual side of my relationship with Clair has never been lacking. In fact, it’s the best sexual relationship I’ve ever had and she’s told me the same. We just click. That was until I acquired cauda equina syndrome.

After I got home, I immediately noticed that gaining an erection was nigh on impossible. We figured it was just too soon and that it would take time to repair itself. The days, weeks, and then months passed and we noticed little to no improvement.

It has been a struggle. Obviously, I can give pleasure to Clair by using different parts of my body but getting hard enough for quality intercourse has been challenging. When combined with the grossness of dealing with a constantly leaking bladder, our sexual intimacy has deteriorated. However, I have not used something like Viagra to assist erectile dysfunction. This is because we’re trying to save this as a last resort and hope things improve in the meantime.

Clair and I continue to discuss having a child together. We are both very much in favor of doing so when (or if) life settles down. However, as you may suspect, despite the want the fear of impotency is very real.

Relationship Strain

Clair is genuinely the most understanding and supportive partner that I could ask for. She has been true to me throughout the entire ordeal. Considering the fact that when my sciatica returned in December, we had barely been dating for four months, she is above and beyond incredible. I am truly blessed. A lot of people say that they’re the luckiest so and so alive because of their partner but Clair genuinely makes me feel this way every day.

I continue telling her that I’m not sure that I could have done what she has for me. I took care of my mother while she was dying. Therefore, I understand the sacrifices that you make to care for a loved one. I feel that because I’m not what I consider to be “myself” anymore that I’ve cheated her at times. She already has it rough being a single mother let alone having a disabled partner too.

I believe that the strain is more my perception than it is a reality. Clair has told me such a number of times. However, what is mental can convey as genuine. We have our share of arguments. However, she’s there for me through thick and thin and I know she knows that I am there for her. Sadly, I know for a fact that some of our arguments would never have occurred had I not had cauda equina syndrome.

Loss of Employment

Before surgery I was working for a registered training organization. I began in September (2018). When I was hospitalized my employer told Clair that they would stand by me and be supportive of my recovery.

I went back to work (from home) two months before I was medically cleared. To be completely honest, I was even doing work from my hospital bed and when I was discharged on bed rest. I never stopped working. I don’t feel as though they truly appreciated what I was doing for them.

Sadly, things weren’t going well for the company. They lost one of their two sales staff prior to Christmas as she retired due to having terminal cancer. The other salesperson was terminated in either late March or early April for non-performance. They never replaced either of them.

I was responsible for digital marketing – social media and web design. In reality, I was their entire marketing department. As a result, I was solely responsible for lead generation. I was delivering analytical numbers to them of double the industry average.

However, due to the company having no sales team the leads were not being converted. The manager took on this responsibility and she is sadly highly incompetent. Because of her inability to close sales I was terminated at the end of May. I was three months away from being employed for a year. As a result, I was unable to file for wrongful dismissal as they are a small business.

This is why it is important that I get my own small business up and running again. If you need marketing or communications work done at an exceptional standard please contact me!

Mental Health Complaints

I don’t believe that it is any great surprise after sharing all of this that I am suffering from mental health issues. My self-esteem has been shattered. I have lost confidence in my body and in organizations to do right by their stakeholders.

Unfortunately, I am suffering from depression and I believe that there is some post-traumatic stress syndrome occurring. I’ve had issues with mental health previously but I have always been able to trust in myself to right the ship. If something is wrong then you work on fixing it yourself.

However, this time it isn’t so easy. I need to rehabilitate and strengthen my body. Additionally, I need to earn an opportunity with an organization or multiple organizations so that I can provide for myself and my family. This is where I see my immediate future going. I will continue doing the rehabilitation and physio on my body to get that into working order if it can. I have plans to speak to a psychologist who I trust to help me put my mental health in the right place. Therefore, I can honestly tell you that I am being as proactive as possible. Hopefully the hard work pays off on all fronts. I’ll keep working until it does.

Rick’s Conclusion on Ongoing Issues

There is a reason why I began my story by stating that I never knew what I took for granted. There are so many things that we do in our day to day life that we don’t even think about. For example, once we learn how to use the toilet, we are generally able to go when and where we feel like it. Sure, when you’re ill you might suffer diarrhea but for the most part there’s nothing stopping you.

Imagine in the prime of your life that that suddenly becomes a huge point of difference in your life. Going from having normal bowel and bladder function to being incontinent day and night is humiliating. Furthermore, because you’re incontinent along with having nerve damage you’re unable to have sex. The whole experience is dehumanizing.

Unfortunately, that’s not all. A combination of poor sleep, loss of motor skills and pain places additional strain on employment, on social status and relationships. First, I lost the ability to live the way I was living before the surgery. Secondly, it put a lot of strain on a relatively new relationship. Finally, it was the major cause of me losing my job. You can understand how depression and other mental health issues became an overriding symptom in my life.

However, I endure. Clair loves me with all of her heart. Her son looks up to me as his primary father figure. They are the two most precious things in my life. When for all intents and purposes I could easily kill myself and end my misery their love and overall value keep me fighting when I’m at my weakest. I have a life to live and I have love to live for. I’m not done yet, there’s so much more to go!

From Cauda equina syndrome to the Future

I believe that it is important to have goals and aspirations. Regardless of the pain and the shame that I feel I know that I need to push forward. I know that if I keep working towards being healthy that I’ll ultimately prevail. The ultimate lesson that I have taken from this experience has been never to take anything for granted.

That said I have a number of goals that I would like to achieve.

Health

I want to continue building on my health. I want to work with my doctors, physios and other specialists to get a successful outcome. Ultimately, that’s becoming someone unafraid to leave the house, contributing to the community, and being happy and in love with Clair and watching her son grow into the amazing human being that he is. If we get married and create a child of our own that would be amazing!

Employment and/or Freelancing

I want to gain employment and/or freelance contracts with organization(s) who have a need for a highly skilled marketer such as myself. They need to understand that by hiring me they will get someone who will be dedicated, loyal and hardworking. My health may slow me down here and there but I’ll always make up for it. Ideally, it enables me to work from home with periodic meetings in person. This is until I build up the health to work beyond the home full time.

Sports

I would dearly like to get back into sports in some way. That may be as simple as being healthy enough to sign up as a member and supporting a club as a fan. Alternatively, it may be working for them in a marketing capacity – I’ve done enough work in the industry to understand how it works. I have ideas that could help revolutionize memberships among other things.

Advocate

Ideally, I’d like to become a disability advocate and blogger who’s opinion becomes respected. I want to create awareness for a number of causes – such as cauda equina syndrome and global development delay (in children). I hope people come to understand and accept that not all disabilities are visible.

Fulfilling Lifestyle

I want to enjoy my hobbies in a pain free and stress-free environment. I want to help Clair and her son do the same. If we can do that and live a fulfilling life then we’ll have done what we set out to do!

I believe that Cauda Equina Syndrome does not define me. I will conquer it!