“Cauda Equina Syndrome” – Say what?
***Before I get started I want to warn you. This is an extremely personal post. It is very off topic from most of my posts. But I think it is very important to write about. Especially if others with the syndrome stumble upon it. If it’s not for you, go ahead and skip it. I totally understand. *****
When the Doctor said “Post Infectious Cauda Equina Syndrome” I asked “What does that mean” a long explanation in medical jibberish still did not seem to answer my question. I was handed a sticky note and told “look it up”. Months and months of research only seem to leave me more frustrated. I decided this is something I would have to post. Both to give an update on my health and if there are others out there are doing research on Cauda Equina Syndrome they might come across my post which will hopefully bring us together.
Here is the Wiki Definition – Cauda equina syndrome (CES) is a serious neurologic condition in which damage to the cauda equina causes acute loss of function of the lumbar plexus, (nerve roots) of the spinal canal below the termination (conus medullaris) of the spinal cord. CES is a lower motor neuron lesion.…..it then goes on to explain more of the grim details.
I have been told that maybe I post a little too much personal information. And that might be true. However I think if you want to know me you would have to know what I am going through day to day. This is a HUGE aspect of my life right now. I found that talking about it with others has helped me find some comfort. I wrote about it earlier this year in a post called Trapped in Bed. That was when I was starting to realize this nightmare would not be over soon. But I was still very hopeful back then. I kept out a lot of the sensitive aspects of this syndrome. At the time, I had not yet been diagnosed. Doctors where still shooting in the dark both with a diagnosis and treatments.
What I found out in June after finally being diagnosed and doing research is that Cauda Equina Syndrome effects a person in so many ways. Many become isolated and lose both family and friends due to the burdens they present. Because many symptoms are not visible it is very hard to express the level of pain and discomfort that is experienced continuously. Other symptoms are very embarrassing and people do not generally want to discuss such things in public. Depression is very common. I feel this is partially due to the high level of medications required just to function daily. It is also hard mentally to prepare yourself for a day (and night) filled with pain. It becomes taxing day in and day out. When you can’t sleep because even laying down does not bring relief. Stress builds.
Personally I have not had a full day of relief since Jan 2nd 2014. I am however a very good actress. (Thank you 8th grade drama class and my many Thespian Society Awards!) I can act as normal as humanly possible in public. Changing positions often. Standing up and sitting down. Excusing myself to give into the pain in private for a few minutes. However more and more this comes with a heavy price. Recently pushing myself to attend a very important event left me bed ridden for three days and nearly a week in excruciating pain. I tend to be stubborn and push through as much as I can. I am finding out more and more that will not work as a long term solution.
I was not even comfortable joining a support group. Thankfully one of my friends put it in perspective for me. One day when chatting with two of my good blogging friends, Asha and Cailin. Asha told me it would be good to speak with people who could understand exactly what I was going through. She also stated that people may have tips for how to deal with the syndrome. They said it’s just like how I liked meeting with my blogging friends. Both encouraging and motivating me. That day I went in search of people who had Cauda Equina Syndrome. It was not easy to find. The condition is relatively rare and there is a lack of current information online. It actually took me a few days. Several times I thought I found something only to hit a dead end. Many of the information and groups were outdated. Finally I quit googling and went to where I least expected to find a support group, Facebook. And whalla! I found support group gold! Simply called Cauda Equina Syndrome this Facebook Group is amazing. It is a closed group so it took a day or so to get approved. It is only for people with the syndrome and family/friends of people with the syndrome. People are very open and honest about their challenges and treatments. Every symptom I had was confirmed here with others having the exact same ailments. Some of my symptoms were met with the words “weird” or “strange” when I told doctors about it. But not here, as I expressed my challenges it was met with people who had been in my shoes. It was extraordinarily comforting to know I was not crazy and these symptoms were not just in my head. I got a thousand times more quality information here then I had with the medical community. I was armed with questions to ask the doctors. I was more confident in what I needed and the path I needed to take with my care and began insisting on a higher quality of medical attention. My only regret was that I did not find this group until the end of August. But I am hopeful this will help me going forward. I have decided to leave the Mayo clinic for Barrow’s Neurological Institute. I hope this is a better fit for me. Only time will tell.
One of the biggest challenges for me in all of this is Acceptance. I keep telling myself this is my new “Normal”. Pain, limitations and a slower pace are all a part of this adjusted way of life. I recently got a Handicap placard for my car. While I know this will be substantially helpful to me the word Handicap was a hard one to swallow. It is very hard for me to stand or walk for any amount of time. My right foot is numb and the more I walk the more numb it becomes. I get off balance due to the numbness and at that point I am risking a fall. While I keep thinking I can push the limits of this, I have been proven wrong by my bodies response over and over again. My children have been considerably helpful in pushing me towards acceptance of my condition. I need to continue to keep up with them. I need to figure out ways to participate in the fun activities. I need to stop declining events and instead accept assistance. My cousins were kind enough to lend me a really awesome wheelchair. And while all I have done to this point is stare at it. I know there are some events where it will be my only choice if I want to participate. For example going to the Phoenix Zoo is something we love to do and go several times per year. At this point there is no way I could walk the zoo. Some of it, but not the whole thing. The wheelchair would allow my kids to enjoy the Zoo the way we always do, without limitations. I am not sure why this is such a hard thing for me to accept. But I would be lying if I said it was easy or comfortable for me. This is something I know I need to focus on and work on daily. I hope every day that this pain is not here to stay. At the same time I need to be realistic and move forward. If I sit here and wait for painless days then life will pass by me.
I also feel like I need to be more open about my condition. There have been times where I wonder if people thought me to be rude. I will grit my teeth and not speak if I am deep in pain. I walk away suddenly if I need to have a mini break down. I really have not been attending a lot of events. The people who live close to me are the ones who see me the most. Car rides are difficult and pain sets in pretty quickly. Even when all the stars align and I am having a low pain day. The medications I am on don’t make for great conversation. I am not quick to thought because of my nerve medication. So rather than stumble through a conversation I just keep quiet. Maybe if people around me had a heads up that these things were challenging to me, they would be understanding.
Through all of this there are still a lot of things I am thankful for and appreciate. My condition could have been much more severe by comparison. I still have mobility and while tremendously painful I am still thankful for it. Some of the major issues I had in the start have improved a little so I have to be happy about that. I keep holding out hope that the little stretches and small exercises I can do, to try and keep my muscles in play, will over time help my condition improve. At the very least I hope it gives me the ability to walk for a longer period of time without the severe repercussions that I currently face. I do have the ability to focus on things like this blog and my time at home with the kids. If I make the most out of those things I think it will help keep me more positive. I am also so very grateful for my friends and family. They have stayed by my side and have been very understanding of my limitations. While I sometimes feel bad about this as a huge burden on the family. They reassure me often that my contributions are valued. Their love and support gets me through the hardest of days.
This is what motivates me every day. To get out of bed. To keep looking for a solution. To keep fighting and pushing my limits. To continue adjusting to my New Normal.
I am still hopeful of what the future holds. I am still in search of answers and a quality plan of action. I will overcome this someday, somehow.