Day 83
November 21, 2024
My last post was October 1st. So much has happened since then. A surgeon told me yesterday, “You have Cauda Equina Syndrome. Not only did you have a serious spinal surgery, you had a serious EMERGENCY spinal surgery. It’s serious and is going to take a long time for your body to recover.”
Today I met with a company that installs stair lifts. Yes, the ones with the 75 year old woman on the brochure. He told me that it comes, “equipped with a seatbelt for safety.” I’m not sure if going trick-or-treating in a wheelchair or meeting with a guy my age about installing a stair lift is more humiliating. Oh, maybe asking my surgeon, who is also my age, to fill out my handicapped placard paperwork is rock bottom. All things aside, I never once considered that a rushed and last-minute, ten minute chiropractor appointment would derail my life for the foreseeable future.
They say that life can change in an instant and it really does. One minute your biggest concern is fitting in a workout and keeping up with the never ending pile of laundry and the next it is facing your arch nemesis: THE STAIRS. Sometimes I decide to do things strictly by whether or not I need to go up the stairs. Up is the worst. It feels like someone is dragging my lower spine and tailbone out of my body. The pressure is indescribable. I crawl up like the girl from The Ring. On all fours, like a possessed animal, yet much slower. More like the girl from The Ring if she was part sloth.
The other day I looked down at my legs while taking my 8th bath of the day (it is one of the only places my body feels okay) and noticed that my right calf is starting to atrophy. It looks like someone scooped out the part of my leg from my kneecap to upper shin. My toes on my right foot are constantly curled and I am unable to do a foot raise. My brain simply cannot communicate with my foot. I am on a waiting list for physical therapy.
My feet are often freezing and my spine constantly aches. This becomes worse if I sit, stand, or walk for too long. By the end of the day it feels like I have the worst shin splints and like my knees and ankles are cracking as I walk. I get cramping in my toes and legs, the type of cramping that makes your toes curl and you feel like you need to straighten them out immediately. I have numbness and tingling that has remained constant from the first day post op and additional days where it is more widespread across places that I thought were already resolved.
Since Cauda Equina Syndrome can happen again, it is extremely concerning to be crawling in pain and experiencing new areas of numbness. The last thing I want is to end up paralyzed because I had a new case and didn’t know. So on top of the physical recovery, there is a consistent mental and emotional strain.
The past month has been riddled with new chronic pain, significant limitations, and frequent flyer status with the ER.
October 2, 2024
Today with my mom in Peru, Kennedy and I headed over to my best friend Ashley’s house to spend the day. I definitely couldn’t take care of Kennedy in the state that I was in. The entire day I was FREEZING (Ash, dude, turn on the heat!). I spent the day crawling around her house with blue lips. I felt too weak to stand and was very shaky. The pain was unbearable. After feeling like my pain was getting under control, this was disconcerting. That night, I ended up back at the ER. I felt like I needed fluids. Ashley, as one of the most phenomenal nurses I know, wanted me screened for a pulmonary embolism. I ended up getting bloodwork, screening, and fluids and was discharged. Ash came to the ER to be with me. Love you Ash!
October 5, 2024
I woke up this morning with increased lower back pain, new numbness in my right leg (again—parts had previously resolved), and numb arms. I actually woke with both my arms hanging off of the bed in attempt to get the blood to flow down through them in my sleep.
The last place I had ANY desire to go was to the ER, but after reading that Cauda Equina Syndrome can happen a second time, I decided the risks were too great not to get screened.
This time I went to Mass General Hospital. I ended up spending 13.5 hours in a hallway riddled with mentally ill patients and many in acute withdrawal. I spent about an hour sitting in a chair in horrendous pain. Sitting was terrible. Finally, I told the nurse I couldn’t sit any longer. About 30 minutes after that I told her that it was fine if she couldn’t find me a bed, but that I was going to lay on the floor. Disgusting, I know. But in this much pain, I was desperate.
Shortly thereafter, she found me a bed. Not a room, this was a cot in the hallway, but it was a bed. I was told that I was here rather than in a room because I may need emergency surgery. In retrospect, I think I would have preferred the 5 minute transport to the OR. It was a long day. By the end of the day there wasn’t one familiar face. Not one doctor, nurse, or patient had stuck around with me. Everyone had been discharged or admitted or finished their shift. I was still on the same cot, staring at the same wall. I hoped it wasn’t Cauda Equina Syndrome a second time, because by the time I was screened, it would likely be too late. Note to self: MGH might not be the place to go in acute emergency.
I was starving. In pain. Miserable. I can’t tolerate narcotics so I opted for Tylenol and Toradol. They were short on IV fluid from the Hurricane Milton and refused to let me eat should I need urgent surgery. The wait was miserable. After about 7 hours, I was brought back to get an MRI.
After reading my chart and talking to me as I struggled on to the torturous MRI table, the radiologist said, “You know that show, Untold Stories of the ER? Well, I’ve heard a lot of stories, and yours is the craziest one I think I have ever heard.”
Yup. I was the lucky one. Of all the titles that I could have received, “Craziest Story of the ER” wasn’t at the top of my list. I read that Cauda Equina Syndrome occurs in less than 1 in 3.7 million spinal manipulations.
I thought this MRI would be less painful than the one I received directly prior to emergency surgery, but boy was I wrong. The pain was excruciating. I clenched my teeth and tried to stay as still as possible. Somehow, I made it through. Tears stung in my eyes as I rolled my body over to transfer to the hospital cot. Although it was originally very embarrassing, I was getting used to being transported across the hospital in a bed.
The radiologists looked at me and said, “We are so sorry. That looks very painful.” The way they said it made me nervous. Immediately upon arriving back at my designated hallway spot, the nurse came over and said, “Anything you need for pain, I can get you.” I told her that I needed pain meds since my back was now on fire from the MRI. Another nurse came over to take blood. I looked up the order on My Chart and realized that the test was a pre-operative screen. Did they think I needed surgery?
I was given pain medication and about an hour later I refreshed My Chart. The results were posted.
After reading and googling, I was certain that my surgeon tore my dural sac and that I had cerebrospinal fluid was leaking into my back. The attending doctor came to talk to me and mentioned that maybe they would drain the fluid. She seemed just as concerned as me.
I called Jay and my sister in tears. I wanted to call my mom but she was in Peru. I prayed that I wouldn’t need emergency surgery. I couldn’t do it again. What if they paralyzed me this time?
An hour later, the neurosurgery resident came down and asked for some background information and performed the strength tests I could now perform in my sleep. He took some notes and left to consult with the team. He did not seem alarmed about my results and although he didn’t give me a definitive answer yet, I felt reassured that it wasn’t as serious as I thought. The last time after my scan, the team rushed in and prepped me for surgery in about 10 minutes. This did not feel that way at all.
Another hour later, he returned. He told me that the team was concerned about urgent surgery and that although the MRI interpretation mentioned impingement of the descending right nerve roots, I did not have Cauda Equina Syndrome again. I was going to be able to go home. I was given information for follow-ups with the spine team, given some new prescriptions for nerve pain, and discharged.
October 6th-November 1st, 2024
Life after Cauda Equina Syndrome is tough. Loss of sensation, numbness, shooting pains during nerve regeneration, loss of mobility, and chronic pain made everything more difficult. I often spent a lot of time crawling. Around the kitchen, up the stairs, from room to room. Sometimes Kennedy crawled with me. Sometimes I got fatigued and just laid on the floor. I found a lot of places I needed to clean from this position. You have a lot more time to find dirt while lying on the floor, popping up every so often to flip a grilled cheese or put something into the oven.
I am an active, motivated, and passionate person. I talk fast, move fast, and stay busy. Going from being a fast walker to one that loses races with the 80 year old women recovering from knee replacements was humbling to say the least. It was depressing. Walks at any significant distance made me long for a wheelchair. Yes, I went from being horrified at the thought of taking a wheelchair into the ER when I needed emergency surgery to wishing I had one to win the races down the hospital corridors.
I found ways to stay busy. I couldn’t do things for long, but I could do things. I found things to do laying down and some that required sitting but only for short intervals. I did projects with the kids, fed the 19 wild turkeys that had become our pets, laid outside filming the leaves blowing off the trees and the Northern Lights, made sea glass art, made earrings, painted, and wrote a few children’s books—if anyone knows an illustrator, let me know! 😊
It wasn’t the same as teaching kids to read and staying active—but at least it was something more than Netflix and Google Scholar articles about Cauda Equina Syndrome.
November 2nd-3rd, 2024
Around November 2nd, things got significantly worse again. Instead of some time on the floor, I was spending most of my time on the floor. I was audibly moaning in pain and I was crawling (crawling is a generous word here) up the stairs in tears. The numbness that had previously resolved had returned.
Kennedy said, “‘Momma, crying!” It broke my heart. I told her if she put bandaids on my scar that it would make it all better. I got her the bandaids and she carefully placed them on my back. She smiled and I told her I was all better and gave her the biggest smile. She beamed with pride. My poor baby.
November 4th, 2024
I woke up today significantly more numb and in so much pain. I sent my most recent MRI to my friend who is a trauma spine surgeon and he advised me to get an MRI with contrast. He said this would definitively determine whether it was scar tissue or a new disc herniation. Due to the severity of my pain and new symptoms, I headed back to the ER. This time I went to Brigham and Women’s. MGH wouldn’t schedule a follow-up (I think they would have and later did, but the scheduler didn’t understand) so I decided to try Brighams, where I was a patient in neurology for migraines.
What a different experience from Mass General. I was taken in immediately and given a bed, albeit in the hallway, but a bed just the same. I was given Toradol and had blood work done. The spine surgery team came down to evaluate me and an MRI with contrast was ordered. I was later given dilaudid for pain because of the MRI table. I would need to be very still and for much longer.
I was taken back for the MRI and felt pretty sick from the medication. I was more confident about my pain being managed but hoped it wasn’t at the expense of the MRI machine if I got sick everywhere. Unfortunately, the pain medication did nothing to mitigate the discomfort of the MRI table. It was torturous. After the first MRI (they did one without contrast to start) I begged to take a break. The radiologist responded, “Sure! But make sure you don’t move your back.”
“Oh my God, that’s what I need a break from! I guess let’s just do it and get it over with because I’m dying.” He injected me with the contrast and back in I went. I kept my eyes closed and tried to focus on anything other than the searing pain extending from my tailbone down my leg and up to my shoulders. After what seemed like an eternity, it was done. I felt paralyzed. I could barely roll over and collapsed on the hospital bed. I needed to change and then get into a wheelchair to get back to my hallway spot. Before I could even get my clothes I burst into the bathroom and dry heaved. Man, I hated narcotics. Every time I had them I couldn’t imagine anyone ever getting addicted. I decided then and there that pain would be more tolerable than feeling like this. It must be the way people feel free falling or riding a roller coaster. I am convinced everyone’s experience is a bit different. And if everyone experienced the same sensations as me, I don’t think roller coasters and sky diving would be as lucrative.
I made it back to my bed. The spine team came by shortly thereafter and told me that the preliminary results of my MRI were could and that they didn’t see a herniation or nerve impingement. They told me “Recovery from Cauda Equina isn’t linear.” That there would be good days and tough days but that it was a bumpy road and a serious condition that took a long time to resolve. They said due to the extent of my pain they wanted to do a CT scan and an X-ray to rule out anything further. I went and got these tests done and was brought back to my bed.
About 30 minutes later a woman came over and told me she was from the Neurology department. She conducted a series of strength tests and asked what felt like 100 questions. She asked me if anyone from the spinal team had come to talk to me. I told her that they did and that they said my MRI looked okay. She told me that no, there was a finding. It was Arachnoiditis. I told her that I was relieved finally someone could give a name to my pain and we talked a few more minutes about potential surgery and physical therapy.
After she left I typed a-r-a-c-h-n-o-i-d-i-t-i-s into Google. It read, “Arachnoiditis is a rare pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds your spinal cord. It can cause severe pain and neurological symptoms, such as muscle weakness. Symptoms may become more severe or even permanent if the condition progresses. Many people with arachnoiditis are unable to work and have a significant disability because of pain. Unfortunately there is no cure for arachnoiditis. It may be progressive.” It was caused by spinal fluid leaking and making your nerves “sticky” and clumped together. This made sense given my last MRI.
I read more and called Jay and my mom in tears. It didn’t matter that I was in a hallway and basically in the nurse’s station. How could this be happening to me? My sister began googling long term disability options and what would happen if I could never work again. Uncle Michael and Granny reached out to the prayer team. I couldn’t do anything but cry in disbelief and pray. I prayed that the diagnosis was wrong, because after what I read, Arachnoiditis was horrid and for life.
An hour later another member of the neurology team came over and asked me to tell him “What’s been going on?” I told him that honestly I wasn’t up to going through it all again but if he had questions I was happy to answer them. I told him I knew about the Arachnoiditis and that there was really nothing anyone could do.
He seemed to start backtracking so I asked him flat out if I had it. He said that I should defer to the spinal team. The ones that told me my MRI LOOKED OKAY. To make a long story short, the radiology resident typed up a finding of Arachnoiditis, the attending ER doctor read it and called the Neurology team to report out. Meanwhile, the attending radiologist amended the report after not seeing Arachnoiditis (thank you God, that is the power of prayer 🙏🏻). Overall, my MRI looked better and showed no herniation.
So I didn’t have it after all. I had been desperate for an answer but in that moment i was relieved not to have one. I was set up with a pain clinic appointment and a follow-up.
November 11, 2024
The pain was unbearable. I couldn’t climb stairs, walk around, sit, or stand for any length of time. I had reached out over the past few days and hadn’t heard back from my surgery team so I decided to call. They increased the amount of my nerve pain medication and called me in stronger pain medication. My surgeon has mentioned a nerve conduction study, so I think that would be our next step.
November 16, 2024
The nerve pain medication made a slight difference but I was still struggling with pain, numbness, throbbing, and limited sitting and standing. After I tried to stand for a period of time and meal prep, I suddenly got searing pain in my right foot that brought me to my knees. It was hot, searing pain and I couldn’t even touch my foot to the ground. I dragged myself to the couch and took some of the dreaded painkillers. It was excruciating. When I took off my socks my right foot was extremely swollen.
November 19, 2024
Physical therapy. My therapist thinks I will be with her for at least 3 months. She is familiar with Cauda Equina Syndrome and has current patients suffering from the condition. She told me that she thinks my post operative care was lacking and that it doesn’t sound like they had a full understanding of the impacts of Cauda Equina Syndrome. I guess it makes sense, given that the chances of getting it are about 1 in a million. Of all the lotteries to win…She tested my reflexes and determined that I have no ankle reflex in my right foot. This is an indication of severe damage to the lower spinal cord. She mentioned that the L5-S1 nerves impact the outside of the foot and ankle, which makes sense since this is the level of neurological insult. In addition, she explained where the weakness in my body was and analyzed the issues with my walking gait. I needed to work on walking heel to toe, despite the fact that this felt completely unnatural with my injury. I took home exercises to try to bring the strength back into my muscles while simultaneously worrying that this might be too much without getting my pain under control first. She told me to do what I could.
A lot has happened over the past month and I’m mentally, emotionally, and physically exhausted, but I’m still positive. I have a phenomenal support system and so many praying for me. Thank you to you all, I love you so much. ❤️❤️❤️
Surviving Cauda Equina Syndrome 