Tag Archives: back pain

My Mystery Diagnosis, Faith and Forgiveness

There was no lightening or thunderbolt or exact period of time or date but it came on very gradually—so gradually that I actually did not even notice the change in my body.

I was still an avid runner living in Augusta in 2011. Hindsight is a wonderful thing and we all have 20/20, but at the time, I couldn’t even fathom that something devastating was brewing. Looking back, I remember running my regular 6-10 mile route when I began to “trip.” At first I attributed this to just being clumsy, which I never was before. It is amazing how the human mind can deny and deny something that is so obviously wrong. Running, previously my most enjoyable past time, began to be fraught with anxiety about whether or not I would trip and fall. Each time I ventured out, I would lecture myself on “lifting my right foot up.” When I did trip, I would chide myself by saying, “What’s wrong with you—PICK UP YOUR FOOT, IDIOT?” But invariably no matter how much I tried, my right foot would not lift far enough off the ground, resulting in tripping. One day, after a very frustrating and anxiety-ridden run, I checked the tread of my sneakers and I saw that the toe of the right sneaker was almost completely worn down, while the left sneaker was fine. Yet I still thought I was merely clumsy. A few days before Thanksgiving, I went to Kroger to buy food for a dish and took a huge fall in the parking lot, spilling my grocery bag. I quickly got up and tried to figure out what had happened. Apparently while getting to my car, my right foot did not clear the curb—more like dragged—and down I went. Fortunately or unfortunately I seemed to be walking normally so this pattern continued until August 2012.

As an obsessive runner I had multiple knee surgeries over the years for a ripped meniscus. In August 2012, I underwent one more surgery on my damaged right knee. I had every confidence that I would recover as I had before, although I was told I should not run anymore. I accepted that and I was just grateful that finally I would be pain free. However, my knee never got better and continued to be so painful where I could walk only with a marked limp. I tried all kinds of shots in my knee but it would not heal properly.

In addition, for a while I had bad lumber pain, especially in the morning. I thought I just needed a new mattress and, no matter how many mattresses I tried (I drove the mattress store employees crazy) my low back pain persisted. But it was not only lumbar pain—my whole body hurt and my toes were numb. I went to my internist, and after doing a cursory exam he concluded that I didn’t have any disc involvement and put me on an anti-inflammatory medication. I asked him if I should at least get an MRI, and he rejected that idea due to the cost. I emphasized to him that MY WHOLE BODY ACHED, but nothing was ordered. I finally decided that I would “self-refer” to a neurosurgeon. I went to the Neuroscience facility on Steven’s Creek Road and saw Dr. B, an osteopath, the first person before referral to a surgeon. He ordered a lumber MRI and it revealed spinal stenosis, pretty common in someone my age. We decided on a course of epidural steroid injections, which proved to be mildly successful for about a week. Then after two courses of this treatment, the pain returned and he finally referred me to one of the neurosurgeons (Dr. S) in that practice. My surgery was scheduled for Election Day 2012 and I had high hopes of becoming pain free again. At that time I was a massage therapist, and it was very difficult to practice my occupation and bend over, trying to relieve others’ pain, when my back was killing me. I went home from the hospital the next day with a plan to do lots of walking and get myself back on track for a quick recovery. However that was not the way it played out. Within a week, I was having balance trouble and within two weeks I was reluctantly using a cane to get around. My right knee was just as painful as ever and I could not walk without a limp and cane. I began to have nerve pain that I almost could not identify because I had never experienced that before. I frantically searched the Internet for some type of explanation and came up with “failed back surgery” as the culprit because I read story after story of patients who never recovered from lumbar surgery.

Now my 4 month long nightmare began in earnest. I went back to the Neuroscience practice and spoke with the surgeon’s very unsympathetic physician’s assistant who said, “give it time” and that the “nerve root needed to heal.” So, I tried to do just that, but instead of seeing improvement, my symptoms became worse and worse. At this point, I had severe burning and tingling nerve pain from my waist to my toes. I had a mysterious pressure on my abdomen and back whenever I stood which was relieved only when I sat or lay down. My right leg was cold to the touch, beginning to atrophy, and I could not lift it properly, much less walk without a cane. What made this so nightmarish was that NOBODY BELIEVED ME. Each time I went in for a check up, I was told over and over, “Well, this is so unusual. We’ve never seen this before”, as if it must be psychosomatic in nature—that was the implication. In the meantime, I was so debilitated at this point that I had to keep crutches and a cane by my bed so I could get into the bathroom at night. I actually drove, but with my heart in my mouth because my right leg, which was partially paralyzed, didn’t function properly. I had so many close calls that I knew God had to be traveling with me each time I ventured out. I had to lift my leg up with my hands to get it in the car and my biggest fear was that I would kill a person or family while driving. When I went shopping I would try to park as close as I could to the store, sometimes abandoning my mission because it was too far to walk. Everything that we take for granted was an effort and it gave me a great appreciation for what disabled people deal with on a regular basis. I asked the physician’s assistant if she could take pity on me and write a note for me to get a disabled car tag, but she refused stating, “Those are only given to people who are totally paralyzed” which is untrue. I ended up getting one from my orthopedist instead.

I went in for another LUMBER MRI because they wanted to see if the surgical site gave them any clues, which it didn’t. I was suffering, both physically and psychologically and I began to lose hope. But I soldered on and each day I would wake up with HOPE that maybe the nerve root was finally healing and maybe, just maybe, I could at least walk a little better. Some days I would fool myself into believing that there was a tiny bit of improvement and my mood would be bolstered. But that positive mood was dashed the next day when, upon waking, it became apparent that I was not any better, and in fact, probably worse. We all know that HOPE is everything, and I had none. So, at this point, I began to consider suicide every morning, even planning the method. I believe that what kept me going was that I employed a 12 step program tool of thinking in terms of “one day at a time.” I would think, “OK, whatever you want to do, you can put this off until tomorrow” and that kept me going in the world for another day. On days that I was so depressed, I would force myself to go to the gym, and although I didn’t go into the regular gym because I was embarrassed by my debilitated state, I went to the disabled pool. It was there that I would find some gratitude because, although here I was, withered polio-like leg, ambling into the pool with the use of my cane, I saw people far worse than me—quadriplegics with happy expressions in the pool. I saw wheelchair-bound people and said, “Thank You God.”

I continued going to the Neuroscience practice for checkups, only to be shuffled back and forth to various departments. All the while, they were baffled by my deteriorated state. One day they decided to perform an EMG and I was so hopeful that finally they would find the reason for my crippling condition. It was New Years Eve of 2012 when, while sitting in my car, I received a call from the nurse stating that, “The EMG showed nothing but an old radiculopathy.” In English—nothing new and nothing that would account for my deterioration. That day was significant in that I just sat there, totally numb and disbelieving, my last hope dashed, and thought that I could not bring myself to go on in the world. A friend of mine happened to see me, and asked if I was OK and suggested we go to Starbucks, which saved me for another day.

The next person to see me at that practice was the pain management doctor who gave me the news in an abrupt manner, that he could not help me. He prescribed Lyrica and Neurontin for nerve pain, but all it did was cause me to fall because it made my muscles weak, so I stopped that immediately. I was so angry at his lack of empathy and bad bedside manner but it turned out to be the best thing that happened because he referred me back to the original doctor, going full circle. Dr. B, the osteopath, sat and actually thought about what might be going on and what my options were. He treated me as a person and his kind, thoughtful manner was appreciated. The new plan was to embark on yet another course of epidural steroid injections, but suddenly a thought occurred to him—what if we order a thoracic MRI? After the MRI I went back to his office with no expectations, but maybe a little hope. As soon as he pulled up the MRI on the screen, his eyes lit up because the MRI revealed a small benign tumor (meningioma) pressing on T3 of the spinal cord. Boom—my world exploded in a good way. He excitedly said, “Here’s your problem. This meningioma is pressing on T3, causing all your symptoms.” It was as if God came down from the heavens and blessed me—I was so ecstatic that words cannot describe it. I am brought to tears when I think of that moment. He quickly referred me back to the original surgeon, Dr. S, who was shocked and humbled. I actually did not want to use the same surgeon, but I realized she knew my case, and I could get this done very soon. Just prior to surgery I discovered an article from a Japanese case study that said, “If a patient is not recovering from lumber surgery, the surgeon should consider the possibility of a thoracic meningioma.” I sure wish I had seen that article months before, but at least it was finally correctly diagnosed. The spinal surgery, scheduled for a week later, was rough but successful. Right out of the recovery room, I clearly remember me lifting my right leg, unaided, and being elated. After a hard 5 days in the hospital, in severe pain, I was released. A home care nurse was ordered for 2 weeks and I dismissed her after a week. My walker went into the garage along with my cane and crutches. I am athletic and I began to recover so quickly due to my previous good shape and I began going to the gym again. I had to be careful that nobody slapped me on my back for a while, which would send me to the moon but other than that, it was fine. My damaged knee began to heal, and my atrophied and cold right leg began to warm and plump out, looking normal again. Here’s the thing, I was bitter at first for all the doctors who I felt failed me starting initially with my internist and I even considered hiring a lawyer to sue. But, I then began to think about gratitude and forgiveness and by the grace of God, a solution to my suffering was found. I began to think that maybe my travails helped me be more empathetic to the disabled, an experience I never would have had otherwise. On March 1st it will be 4 years since I got my life back. But, each time I perform an otherwise unremarkable feat such as walking briskly across the room, or climbing stairs unaided, I am in awe. Sometimes I am merely in Walmart and I marvel at how fast I can walk, or in an airport, briskly passing people on the way to my connection. It is amazing and miraculous and I will never stop being grateful.

Surgery Log – Christmas Eve

12/24/12 – Monday – Christmas Eve – I woke up with the usual stiff and sore body. I decided I would go to the gym and to a meeting. I also did not feel like doing my usual chores in the house today so I went to Starbucks and just sat down with a Pumpkin Spice Latte. I came home and redesigned some of the earrings that Lisa gave me for my “birthday.” Janet’s family usually celebrates Christmas on the 25th but this year things were very different. Due to all her children having plans on Christmas day, they all decided to come over on Christmas Eve. That was fine but it left Christmas day empty, but this was not my call so I had to accept it. In the meantime, my legs for some reason were especially wobbly and my balance was way off. This was very upsetting and I almost fell while everybody was there. That just made me sick. I totally do not understand why some days my legs don’t feel that bad and even feel strong, and other days, I am so weak. When I came home I watched the tail end of It’s A Wonderful Life.

12/25/12 – Tuesday – Christmas Day – My walking was not too bad but a little wobbly again. I even walked outside with my cane for about 20 minutes or so. Then I got ready and went to a meeting. I was ranting a little before the meeting due to my wobbly legs but for some reason, after the meeting I felt a lot better. I wanted to go to Starbucks with my laptop but when I found one open, it was so packed to the gills that I just left, without even getting anything; very disappointing. I came home and put my leg brace on which helps me walk better—sort of (in a peg leg kind of way). Then more cleaning, something I seem to be obsessed with since I got crippled. Janet thinks this is because I at least have some control of this part of my life, and that seems like a good explanation. I am starting to feel depressed and hopeless even as I write this at 7:00 pm, so I will try to go to bed early tonight. I still think about ending everything each day but if I put it off long enough, I usually find something I can hang on to; some hope to keep me going for yet another day.

Surgery Log 2012 – New Reality

New Reality – Sunday – I decide to clean my bathroom, even though I am still unsteady. My knee feels slightly better because I am not doing so much bending and flexing during exercise. Even the backwards squats, holding onto something, irritates my knee. I go to the gym and work out in the woman’s section so I won’t be so noticeable. I am acutely self-conscious about my limp and having to use the cane. But I guess it would be even more embarrassing if I fell, hence the cane. Maybe I need to get a distinctive walking stick for some flare! I do the treadmill, some biceps, triceps, shoulders, etc. using light 5 lb. weights. I also try the thigh and hip machine on an extremely low resistance. I am careful not to do anything that pulls on my back at all. All of a sudden I notice my damn knee is back to being painful, probably due to my small squats to strengthen my knee. Again, I am very discouraged. I am laying low today in the house, writing and taking it easy. Yes I could go out again, but I decide to just chill since it is Sunday. It is amazing how I actually wish I were working tomorrow because I am losing my mind with boredom. I love to write but as always, I lack structure in my life, which I so desperately need. My goal is to actually get better enough to start traveling, taking pictures with a new digital SLR, and getting paid with the pics. I am a good photographer and this is what I want to do. But, everything in my life is on hold until this incredible numbness in my legs gets resolved. My left leg is not so bad and not weak, but my right leg sometimes does not even support me at all. I am walking in fear all the time, and so slowly that it makes me feel extremely old. But I have to stop looking at my past and reliving my former self. I find myself saying, “Oh, I used to run marathons and be in great shape. I used to work out every day for an hour. I used to look good. I used to have gorgeous shapely calves, etc.” That does me no good whatsoever. I heard Stacey say that she would tell people that she used to make 100K and have a beautiful spacious home. The reality is that she lost all that and now lives in a nice apartment. My reality is that I no longer run, my right leg is atrophied a little due to weakness, I cannot work out the way I used to and my body does not look the way I want it to anymore. I have to accept this and move on to the next phase in my life. Hopefully, and God willing, my leg will improve as the numbness subsides, but as of now, my life is changed. I do not know when or if there will be improvement, although I’ve been told there will be. I have to latch onto that prognosis and try hard to notice even the most infinitesimal improvements. I never thought that I would take so much pleasure in such small things, but maybe that is why this is happening. My mood can turn around in an instant with just one small improvement in my walking, my knee, less numbness. But, conversely, it can go the other way when there seems to be no improvement or even a setback. I have to learn to roll with the punches and realize that ultimately it is my attitude that will save me.

Adversity Teaches Empathy

It is amazing that so many people take for granted being well and feeling well. There is nothing more humbling than having a debilitating illness or injury to bring you back to earth. I have been one of those athletic people who would look at someone struggling in the gym or out just walking slowly, without trying to understand that each person has a story. I have been struggling for many months with debilitating back pain and severe degenerated right knee. My back and knee pain was so bad that I would have to hobble from bed into the bathroom each morning, walking like I was 85. The constant, unrelenting pain and soreness also affected my state of mind, causing depression. It is so hard to look at the bright side of things when you are hurting over and over and life looks so bleak. It was so humbling and embarrassing on my trip to Guatemala. On the plane I would start to get anxious when we were about to land knowing that my back and knee would be so stiff that it would take a while for me to unbend. Getting up and carrying my luggage out of the plane was torture. I always thought of myself as this physically fit specimen and now I felt like a cripple, limping down the aisle. Things that I used to take for granted, like climbing down the steps of the airplane (in Augusta for some reason you have to climb down these stupid steep steps to get off the plane) caused me so much anxiety—being so afraid that I would fall or need assistance. When you are physically well, things like that don’t even occur to you. Now things that were never issues were now major concerns. Once in Guatemala, I was in constant pain, living on Ibuprofen. It prevented me from going on walking tours and, coupled with me being lonely, I was miserable. When I went on a tour to Panajachel I had to constantly climb in and out of the boat that ferried us from village to village on Lake Atitlan and that was pure torture. Once if it had not been for two guys holding me, I would have collapsed, due to my knee totally buckling under me. Back in the States, it did not get any better and I have since had knee surgery (much more extensive than I thought it would be) and have also had epidural steroid injections to my back. I want to travel now, but I was unable to plan for anything due to the constant uncertainty of my physical condition. Whenever there is a life altering event, whether it be a loss of a job, illness, death, divorce, you always look for a reason. The thing is that I feel there are no coincidences in God’s world and it may not be revealed until years later or weeks, you do not know. I am slowly starting to feel better but being so debilitated gave me real empathy for others. When I see people hobbling slowly across the street I know that there is a story behind it. I have a friend who suffers from MS and is on disability. She is estranged from her family who is totally unsupportive, yet she still perseveres. Another woman I went to school with just finished battling stage 4 uterine cancer, having gone through hell with chemotherapy, major surgery, colostomy, and having to rely on others since she lives alone. Then I look at myself and realize that maybe it is not that bad. Of course, when you are feeling better it is easy to look back and say it was not so bad. I am still having problems with numbness in my body, but maybe this is God’s lesson for me; be grateful for each day that you feel well and don’t take it for granted. It has given me a better understanding of other’s problems and pain, physically and mentally. Nobody has a perfect life, although sometimes it seems that some people do on the outside. It has also given me more of an incentive to change my life because I can appreciate that there are no guarantees that you will be around tomorrow or even later in the day. We take for granted that we have an infinite amount of time to achieve that elusive happiness and that is not true. My friend Janet is now in France with her husband, one among many trips they take. They are living now, not putting off what may never happen if they waited. Being so ill has put a time frame to my plans. I know that I absolutely cannot continue to live a life doing what I don’t want to do. I ask myself sometimes, “when are you most happy.” The answer always comes back, “when I am not at work.” It is time for me to move on to the next phase of my life. I am so consumed with making money due to my upbringing (compulsive gambler dad) when money went flying out the window and life was insecure, that now it is my main focus. Yes, money does buy things I like, but continuing doing what I don’t want to do is killing me over and over. One day I will wake up and it will be my last day on earth and I will die never having taken the big risks and living a life of my dreams and how sad is that?

Chronic Pain

Unless you are experiencing chronic pain, you have no idea how absolutely all-consuming and debilitating (both mind and body) it actually is.

I have always prided myself with being very physically active and fit; I was not going to be one of “those” people who walk with canes, limp, and generally have trouble getting around. I would be forever “young” regardless of my age. I think God has a great sense of humor and he/she loves to give us lessons in humility when we are too damn cocky. I have been a runner for about 26 years and regularly accepted the chronic pain in my knees, but it was basically achiness due to some arthritis. I have had numerous knee arthroscopies throughout the years, but apparently it was not enough to take up another sport. I just kept on, ignoring my poor, deteriorating knees due to my obsessive nature. Then about 8 months ago, I bought a new mattress and suddenly it was my back and hips that began to ache. It started out with just some stiffness but after a while, it was constant when I worked out. I noticed that when I ran it was worse. Then my right knee began to give out and when it rains it pours, because then everything went wrong. I went for Supartz injections into my knee with the hope that I could return to running, but there was no improvement. But, it became painfully (no pun intended) obvious that I was dealing with more than just a torn meniscus. Gradually, my right foot and toes, my low back and hips, my thighs and belly have become numb. The pain in my back has been non-stop and I was living on ibuprofen. I saw my primary doctor and he blew me off, in addition to my orthopedic doctor, who was only concerned with my knee. Since the injections in my knee joint did not work, we did an MRI, which showed a torn meniscus, which has now been repaired with arthroscopic surgery (5 weeks ago). But the back issue remained and what most concerned me was the numbness. Finally, due to any lack of caring or just procrastination on the part of the aforementioned doctors, I took the bull by the horn and self-referred to Augusta Back. After telling my tale of woe, the osteopath ordered and MRI, which shows bulging disks, as well as some spinal stenosis. I just went through the first round of epidural steroid injections and will have more for the next level of the spine that is affected. But, I have run the gamut of emotions due to severely limiting my physical activities, although I am still working as a massage therapist. Yesterday I woke up in such bad pain (both knee—which is taking forever to heal—and back) forcing me to literally hobble to the bathroom, that I had a total emotional meltdown. Some days the pain is not that bad, and other days it is more than I can take (probably emotionally more than physically). It does not help that I am still limping on my bum leg, which throws my back and gait off. It also does not help that I am on my feet constantly at work and went back to work only 4 days after surgery. I always thought of myself as “superwoman” when it came to my body and overcoming aches and pains but God has other intentions, apparently. They say that things happen for reasons, and I am still waiting to discover what the reason is. Perhaps it is just to slow down and smell the roses and realize that I am human. Or, perhaps it is a way for me to be more compassionate with other peoples’ suffering from chronic pain or debilitations. I have to say that when I see people walking slowly I can now relate. I would appreciate if anyone going through something similar would please add a comment and let me know your story.