Tag Archives: epidural steroid injections

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 – 3/29/13 – Forgiveness

March 29, 2013 – Forgiveness

For some reason I was thinking of all the screw-ups perpetrated by so many doctors and I started to get angry and resentful. It first started with Dr. H, who basically blew me off when I told him numerous times, that my whole body was killing me. Looking back, this was due to the spinal stenosis. He kept ignoring me and ordered a stupid regular x-ray, when he should’ve referred me out. Then when I went to Dr. G, he said he didn’t want to step on the toes of Dr. H, so again I was blown off. I finally referred myself to Augusta Back where the travesty continued. First I saw Dr. B, a D.O. who finally ordered an MRI. It showed spinal stenosis so he did epidural steroid injections, which worked a little but not enough. He then referred me to the surgeon and I then had a lumbar laminectomy, which was successful but didn’t address underlying symptoms too. In fact, I was worse as time went on, only to be told over and over that the spinal nerve just had to heal. Then after 2 months, they finally started to say that there was nothing that could be done and they had no idea why I wasn’t getting any better. At that point, I was hobbling with a cane, with no balance, causing me to fall at the drop of a hat. My foot was dropped and my leg was partially paralyzed so that I literally could not lift it up without using my hands. They dismissed me to a pain management doctor because I was also suffering with unbearable nerve pain in my abdomen, back, both legs and feet. My life turned to a living hell. Luckily the pain doctor told me he could not help me either. At first I was angry but now I am so lucky because I finally got sent back to the original doctor, Dr. B. He actually took time to stop and think about my symptoms and decided that it just might be coming from the thoracic spine. Sure enough, after a thoracic MRI, he discovered a small meningioma, pressing on T3 of my spinal cord. This was what was causing all the symptoms, including a weak right leg and all that nerve pain. I finally decided to go back to the surgeon, who, in my estimation owed me a huge apology for not looking any further for an explanation regarding why the hell I could not walk. She performed the surgery, which was much, much, more painful and complicated than the first, but Dr. B was right; the compressed spinal cord in the thoracic area was the culprit. To this day, I cannot fathom why the surgeon treated me like I was a nutcase and did not bother to investigate further. It would have been so simple to just think about it and order a thoracic MRI. I do not know why that was not even in the realm of possibility for her and why nobody else would actually listen to my symptoms. Here’s the thing, I could spend all my time being angry and resentful or I could be extremely grateful that at least I found the doctor who finally got it right. I wasted so much time being crippled and sad, so I don’t want to waste any more with being resentful. I prayed to God for me to find a doctor who could help me and my prayers were answered—that’s all I know now. I am grateful over and over, each time I do a simple thing like walk across a room, unassisted.

Surgery Log – 2013 – New Year

February 9, 2013 – Saturday

Well, the new year is starting out like 2012. Already I have gotten a huge bill in the mail for the new round of epidural steroid injections, which may or may not work. Considering that I have almost no money coming into this household, it is very frightening. I did one massage yesterday and one today. I have been taking a new medication for the stiffness in my legs and it seems to work somewhat but as usual there is a side effect of weak, wobbly legs. I did the massage today with that kind of balance (or lack of balance) but I miraculously got through it. I kept watching the clock and hoping it was over because I am working in fear. It is amazing how many things I took for granted when I was a “normal” person. I went over to Starbucks for a treat and I wanted to sit in a nice comfortable cushioned seat but it would’ve entailed me maneuvering past multiple people with my cane, my drink, my purse, and my book—that was not happening. Then I wanted to go into Krogers to buy some mozzarella cheese but thought about how long and arduous a process that would have been requiring me to find a handicapped spot, park, drive through a crowded parking lot, get a shopping cart (even though I would normally not need one for just one item, but it helps me walk), etc. I then made the decision to just pass on going in, even though I really wanted that cheese for dinner. Who would’ve thought that I would get jealous of people just walking or driving without even putting any thought into this simple act? Everything is harder when you are disabled, and that is what I am at this point. I have to think twice before embarking on any activity, even simple things. I will continue to pray for God to help me find a solution or if not, to accept this because I cannot live in bitterness or anger; then the surgeon has won and I will have lost more than my ability to walk.

Surgery Log 2012 – Pain

Pain – Self referral – Sept 2012 – I am in so much pain that I reach out on Facebook and several people recommend a place called Augusta Back. When I went there they ask me who referred me and I put, “SELF Referral” because it was. If I had waited for my primary care doctor to send me for an MRI, I would still be waiting. My orthopedic knee doctor would not refer me for an MRI either for fear of “stepping on the toes” of the other doctor; how ridiculous is that! So, I had to be my own advocate and take matters into my own hands. The MRI reveals that I have bulging disks and most importantly, spinal stenosis, in the lumbar region.

I see Dr. Baker, an osteopath, first. He specializes in the administration of epidural steroid injections, which worked at first, but soon gave out. The first day I was ecstatic because the pain was gone, although the numbness in my toes was still there. I actually cried with relief, thinking that finally my nightmare was over. Unfortunately the numbness was not addressed. He tried another round of injections two weeks later and the numbness seemed worse. At that point he referred me to Dr. Shaver, a neurosurgeon who was recommended by 2 people I know. She informed me of my options and they all pointed to surgery. I agreed and my laminectomy was scheduled for November 6, 2012.

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.