Everyone asks how I am doing, I wish I could honestly say “great”. Here is my “but”. I am doing great compared to the era we will call “before surgery”. But how can I honestly compare the three segments in my life? I have “before Tarlov”, “before surgery” and “post surgery.”
Before Tarlov, life was “normal”. I did what I wanted, went where I wanted, lived a carefree active life. Never thought twice about some of the things I did daily, never worried about banging my body around, sitting for hours in a car to visit family. I never worried about how many hours I spent in the mall and how fast I was walking from one end of the mall to the other. I even used the stairs, I even bumped into people. Yes, I had experienced “pain”. I knew what “pain” was. I had burned my hand; I had children; I had my foot run over. Yes, I had experienced Pain.
The period Before Surgery was a learning experience. It was like going through my college years. Everything was becoming new. I was testing the waters of “Pain”. I didn’t know what was happening to my body. Was it just getting older and complaining to me? Was it telling me that I was not a teen anymore? Was I ever going to get used to the pain I was feeling?
The “doing” in that phase was just tolerating the pain, the pills, the condemnation of doctors. Having to learn what was wrong and fighting to get answers was the hardest part. Let’s talk about the “before surgery” pain. I will use “pain” here. It started as a simple pulled muscle feeling, but it wasn’t quite right for that. Why was the aura around the bones in my body hurting? Why did it hurt to sit? Why was traveling so unbearable? These discomforts turned into full out Pain! The funny feeling I got in my toes and feet became a constant need to move both. I can remember becoming so frustrated that the sensations would not ease that I could scream. My mom taught me better though. (Yeah, right!) The sides of the thighs would have that “touching ice cold metal” numbness and then they would start stinging at the same time. I don’t know about you, but when I touch ice cold metal it hurts. Then to have that deep sting that you can’t rub away on top of the hurt, would you be a nice person? I constantly tried pushing on whatever part of the body decided it wanted to hurt or sting, trying to get the sensation to ease or go somewhere else on the body.
Now, just having the feet and legs acting up, you might be able to handle, but not very graciously. You could possibly tolerate it. That would be a fair day for me. If I had to be in a car, you know that fair day turned into a silent cry day. Here the “sitting” day did not start with the toes and feet, it went full force into the hip region. Every chair cushion seemed to have hidden rocks in them. Not the smooth river rocks but the jagged free tumble rock-slide rocks. That wasn’t so bad to tolerate but, if those rocks became hot or brimstone, I was in trouble. There is no amount of pain meds that can erase those pains. But the hip area couldn’t contain all the nerve activity. The nerves would be so irritated that the pain would also take up residence in the tops of the legs and go down the thighs. Going down the thighs, it could be the outside or the inside. Maybe, but not always, it would skip the calves or shins, but it was not skipping the feet. Just thinking back about the pain still makes me nauseous and want to cry.
I could tell you it did not feel like the bones that hurt, and I could tell you that it did not feel like the muscles that hurt, but I could not tell you what was hurting. I had never experienced this to my body anytime in the past. All I knew was I could not go through life tackling this every day. Did I feel all these symptoms every day? Not every day, until the last few months, then it was everyday and every night. If you read the pages describing my journey, then you know I tried several medicines. But why should a doctor think it is OK to take a medicine that will make you want to throw up, or make you forget yourself, just to make the pain a little more tolerable? I even tried exercising, but all it did was make the pain worse. I tried the bathtub and that was so uncomfortable that all it took was one time.
Laying around became a daily discouraging event. Sometimes I had a heating pad. Some days I didn’t move from my couch except for the bathroom breaks. Some mornings the husband would “move” me down stairs because my dog needed me. Sometimes laying in bed was painful. Keeping a pillow between the legs could make the hips go numb on top of the pain, so I was constantly rotating which side I would ‘sit on’. Reclining was so painful that my body would freeze up and I would have to find something or someone to pull me to a different position. It did not take me long to figure out that reclining was what was causing the stiffness and non-responsiveness of my body.
By the time I found out about what the real culprit was, I was angry! Angry at the doctors for dismissing something so blatantly showing on an MRI. I am no PHD, but even I know any simple knot on or in the body could hurt you. Heck, even a zit hurts. I was made to go through 3 more months of increasingly unbearable pain just to satisfy ego or ignorance?
So, how am I doing now in the “Post Surgery” phase? I can say I am enduring most days. Do I have the same pains as before? Yes, I still have stinging, burning, tingling, and soreness. My feet rarely act up, except when I am on extremely hard surfaces like cement floors. That means that shopping is still a problem, but nothing like the “before surgery”. I go through the grocery store, or any store for that matter, in a permanent almost bow. The left hand is protecting my back. I could care less about the stares I get trying to get a cart pushed with one hand. Maybe I should purchase one of those strobe lights that are on school buses or “wide load” signs. When I get home, on the couch I go, but I don’t cry or take medicine. The legs do not have the same extreme sensations as before, and with care I can ease them. I still have issues with sitting. Remember, that I am only going on 10 months post surgery, and still have over a year to recover. What my biggest problem is,– is sitting here typing to you. What am I feeling? The hips are burning, feeling like they are being pried apart; sometimes the tailbone aches or feels bruised. Sometimes the tops of the legs feel like I have run a mile. There is a stinging under the skin in the incision area. What could it be? Well it could be muscle healing itself, it could be the absorb-able plate that was put in to protect the area, or it could be the one tiny cyst that could not be wrapped showing its ugly self.
You might say that it sounds no different than before the surgery. Wrong! It is not all day; it is not all night. It is not every day. Nerves have to heal and as I have said before; they have their own timeline. The extremeness is reduced, so now it is a discomfort not a pain. I rarely take drugs to knock off the pain, which is now more of a nuisance than a pain. I have learned to look at “Pain” as something to conquer. I have learned my nerves understand what I am feeling and if I don’t want them to feel “Pain” then I have to be positive and find a different word to use. I have come to understand that crying is OK. And if I yell at you, then you should have paid more attention to what I was going through, to know what level I was feeling, and yes I apologize.
Are my pains the same as all other Tarlov cyst patients? Yes and no. Each person feels sensations differently, but because we describe them differently does not mean it is not the same. Some have gone years trying to find out what is causing the pain, some have to balance their emotional life and family life. The longer one tries to live with the pain, the stronger that pain becomes. Some have other medical factors that play a role in their pain levels. Will the issues resolve themselves? I have yet to talk with anyone who had it ease or resolve without surgery. There might be a magical patient out there, but I haven’t heard of one, so don’t count on that happening.