Tag Archives: failed back surgery

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 2013 – Jan 15 – Pain level off charts

January 15, 2013 – Tuesday

For some reason, my pain level on Sunday was off the charts. No matter what I did or took, I could not get it to abate. But by Monday, it felt a bit better, maybe because I took a Gabapentin for the nerve pain. However, that halfway decent feeling did not last. I saw the famous pain management doctor who proceeded to rattle off, in a very stiff and uncompassionate way, all my options. He didn’t even call me Marilyn—he called me Ma’am. He basically told me why nerve blocks, steroid injections, etc. will not work for the problems I have. He did, however, give me a prescription for Lyrica, a new drug for nerve pain and send me back to the original doctor who did my steroid injections. I took the drug last night and experienced dizziness (a side effect) until early this morning, but it seemed to lessen the nerve pain a bit. The dizziness wore off completely about an hour after I was up, so maybe that was not so bad. What amazed me was that there was a total lack of empathy on his part. What happened to the art of the bedside manner? I just don’t remember doctors being so aloof and distant when I was a child. Now you call the office and you NEVER get through to the actual doctor, just the nurse, who relays (supposedly) the message to the surgeon. Since my surgery 2 months ago, I have seen the surgeon exactly 1 time and that is it—pretty sad! I submitted a letter to the surgeon and the nurse (more for me to vent than anything) telling them how shocked I was with their determination that I was “work ready.” I sure don’t expect any kind of response at all and I am not even sure if the surgeon ever got the letter at all. But, I felt better. I had a massage today too but felt very mentally bad afterwards. The reason is that I just had to admit that I may never return to that line of work at all. I cannot ever see that happening because you have to be physically able and I am not at all. I also met someone I knew at the Y who is the epitome of physical fitness. She was aghast to see me meandering slowly with my cane out the door so she wanted the scoop. I told her my sad story and she said she has been advised to undergo spinal surgery due to constant pain in her legs and arms, etc. I said she should think long and hard about that because back surgery is really hit or miss. There is an alarmingly high percentage of failed back surgeries (Post-laminectomy syndrome) where the patient has no relief or is even worse off than before. I think I fall into the latter category. If I had known this I never would have had this surgery. Now I just have to try to find a way to get better, or at least accept this hand that God has dealt me.

Surgery Log 2013 – Jan 8th – Depression, rage, self-pity

Tuesday January 8, 2013

I actually was walking a bit better today. I really think it is more depressing when I go to a meeting. What usually happens is that I see multiple people who have had surgeries after mine and they are either recovered or on the right road. That just elicits so many emotions such as rage, self-pity, depression, jealousy, etc. Last night I came home in such an agitated and depressed state of mind that I don’t know how I got through the night. I woke up almost as bad, but as I always say, all it takes is just a smidgeon of hope, which I did get today. First of all I called the office who sends out the medical records, only to be told that they don’t even have a record of this request in their system yet; not good. But, he told me that this is probably due to it being New Years Eve when I put in the request. It probably didn’t even get sent to then until this week, which is only Tuesday, because they probably missed the pick up last week, etc. Bottom line, it is severely delayed due to the holiday and there is nothing I can do about that. He assured me that as soon as they get it in their system, the turnaround time is small. He estimated that the new doctor would not even receive it for at least 2 weeks. Then I called the new doctor and spoke with Katie, the scheduler—who actually remembered me. She had spoken to the doctor and he said he would be glad to see me. HOPE # 1 – maybe, just maybe he will find something. HOPE # 2 – I saw Kevin, the PT at Augusta Back and he still thinks I will get better (maybe not 100% but a lot) and that it will still take time. He is more like a psychotherapist than a PT but he just is so nice that I always leave there with a sense of hope! I am scheduled to see someone named Dr. Cable, a pain management specialist, and we’ll see what he does. The PT told me he was surprised that they dismissed me to go back to work on the 11th. He just sat there, shaking his head and said that the criteria they use to determine work readiness is not geared toward the individual but rather the average patient. That is so wrong because each case should be evaluated on an individual basis depending upon the occupation and the patient, not some average value that does not apply to everyone. I felt that they showed so little compassion and were just plain cruel. I am still in pain and off balance but a little better today, so we’ll see. In the meantime I saw my PC physician for some antidepressants because I am finding it hard to keep on keeping on in this world lately.

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 – Pressure, Numbness

Pressure, Numbness – 12/19/12 – This morning I woke up feeling less stiff and off-balance, but with the same intense pressure on my belly. I am beginning to think that maybe I should just accept that this might be a permanent condition. Basically there is no answer as to when or if the numbness, burning and weakness will improve, so it is just a waiting game. I find that when I just ignore it—or about as much as I can—I feel better and can stop focusing on everything bad. Actually there are some improvements, most notably, I can bend over and turn sideways because the actual incision and the back itself are much better. But, internally—the nerve root—is the last thing to heal and it can take up to a year or more. My guess is that the EMG will basically show nothing. The PT made a very important point; if it were peripheral neuropathy, it would most probably be bilateral, but my weak leg is unilateral. I think the test will just prove that the whole problem is still the spinal nerve and it just has to heal on its own. I remember when I had a root canal about a year ago and for a long time I kept complaining that I still had pain, to the point where the dentist went back in to check. He said nothing appeared to be wrong with the tooth and sent me on my way. Boy, I was so aggravated that I thought for sure that he screwed up the procedure. So, since there was apparently nothing else that could be done and they could not find a reason why my tooth still hurt, I had to just live with it. Well, a few months ago when I was brushing my teeth, I suddenly realized that my tooth did not hurt anymore; the pain was gone. It had steadily been getting better, over time and so slowly that I didn’t even notice it. Then one day, it became apparent that it felt normal. I’m starting to think that this is what will happen with this; over time the symptoms will diminish to the point that it will be gone. The question is, can I wait until that happens. I am thinking of filing for disability because my doctor’s nurse seems to think that I will be able to return to work soon. I just don’t think that is reasonable with such a physical job as I have. I will literally fall out in the massage room because of this weak leg. This is not to mention that I can only stand for so long without the fatigue and burning setting in on my legs. She is being a bit of a hard ass about filling out the required forms. I’m still searching for a “reason” for this happening and I just don’t know for sure. As of now I am thinking of calling my primary care physician to put me on some antidepressants, just to get me over the hump. I went to a meeting today and I foolishly thought that I could walk without my cane so I held it up when I came into the room. That was not a good idea because I almost fell into my chair, totally losing my balance. Then for the first half of the meeting, I was on the pity-pot. By the end I felt a little better. It is true that for some reason, I am “walking” better today, but not well enough to do it without a cane for protection against losing my balance. But on a bad note, the burning sensation in both thighs is intense again and I dont not know why. The problem is that these brief periods of progress always seem to be followed with a regression the next day. Each day is a new beginning, as if the progress from the following day never even happened and is so discouraging. As of right now, at 4 pm, the burning in my thighs is very intense and uncomfortable. But if it comes down to being able to walk better and having burning nerve pain, I’ll take the walking better part.

Surgery Log 2012 – No Improvement

No Improvement – 12/5/12 – Wednesday – I woke up in pain because I am laying off the ibuprofen due to my impending facial surgery on the 11th. I really don’t realize how much the ibuprofen helps me. I took the stupid steroid pills which so far have yielded as much of a result as the surgery itself. I do my exercises at home, trying to remember all of them from PT yesterday. I had a little hope yesterday because the therapist gave me some, but left to my own devices, that hope rapidly dissipates. The other night I went to a meeting and saw Frank who had spinal surgery the day before I did. He is doing great and improving rapidly. That stuck in my mind and I know that I should be happy for him yet I cannot help but feel jealous and angry. Then today I went to a meeting in the afternoon only to see yet another person who had surgery last week and is improving. Yet, here I am, 4 weeks out and I have literally no improvement, and I am in fact worse, in some respects. I cannot walk properly and my right leg is weak. I drag my foot and am scared while in the car because my reaction time is not good. It all came to a head this afternoon and I blew a gasket. It started because I was doing my cleaning, which takes me forever. Then I started to get resentful because I thought of Frank who only has to concentrate on getting better and has a wife to clean and cook. I, on the other hand, have to do all this by myself. I cannot just let my house go to pot; it needed cleaning but it wiped me out completely. Then I got angry and resentful that I have to do this alone, and it snowballed from there into a full-blown meltdown, complete with crying and ranting and raving. I called Gail to see if she could speak to Maudy (a spiritualist) and call me with some guidance. I could not stop crying while on the phone, and must have sounded pathetic. This is just too much for me to take on some days, and the trigger was seeing others improving while I am left in the dust with no discernable idea of when or if I will get any better at all. It is also so frustrating that I cannot talk directly to the doctor.

Surgery Log 2012 – Discouragement

Discouragement – 11/28/12 – Wednesday – 2nd entry – For some inexplicable reason, after doing the PT, going to a meeting, and walking in Target, my legs, abdomen, and back are unbelievably numb and tingly. I had to go back to the house suddenly because I felt so terrible I couldn’t really stand up too much longer. It is so upsetting and discouraging. I actually felt halfway decent today, but as of right now, my body from my waist down is totally numb. I’m back to thinking in a negative way again. I told myself to be positive but I’ve had it for the day. I think I will get the chores done early and retire to my bed to read. At least if I enter a world of fantasy, I don’t have to think about myself. At this point I really am wondering if this will ever get better. One day I seem to be making progress, and the next day I feel no better than I did before the damn surgery. Sometimes I wonder why the hell I even had the surgery in the first place. I actually feel worse than I did a few months ago. I am having trouble finding a reason to go on with this whole thing. I hope I feel differently tomorrow!

11/30/12 – Friday – I resolved to be in a more positive state of mind because I know it does affect the healing process, or so I’ve been told. But, as usual I awake with stiff and numb knees, quads, abdomen, back, etc. The only good thing is that the cortisone shot in my knee seems to actually have helped so my knee does not get “stuck” in one position when I sit causing me to limp until it straightens out. I must be at least grateful for something and I truly am. But, my right leg is just so damn weak that I am constantly off balance and must limp. At first I thought my limp was due to the uneven hips but actually it is because my damn leg will simply not support my body. I am very self-conscious when I have to use the cane, but I limp less and don’t feel scared of falling as much. The fear is still there though. I rant and rave today and finally decide that there should have been at least some sort of improvement so I call the doctor’s office and speak to the nurse (of course) who seems somewhat concerned. That surprises me because I am sure she will say, “Oh, it is too soon so don’t worry.” But she decided to put me on a steroid pack to help relieve inflammation. It is day 3 and there is really no improvement so far. Actually I thought I was walking much, much better on Saturday but by Sunday that progress seemed to have disappeared. Maybe it was just wishful thinking or maybe there was an initial improvement, but I don’t understand why sometimes things seem better and then I wake up back to square one. When I get up and I have trouble walking, with the same numbness, I get discouraged.

Surgery Log 2012 – Beginning

Beginning: Background – About 8 months ago I became aware of a chronic back and overall ache, mostly in my back and hips. Thinking it was due to my new mattress I returned the mattress 4 times trying to wake up not feeling like a Mack truck had hit me overnight. I would shake it off, pop my 4 Ibuprofens, take a hot shower, and go out for a run or to the gym before going to work. But, it soon became apparent that my right knee was painful and I probably had a ripped meniscus. But It also became apparent that I was having limited ROM on my right side and had constant pain all over—not just the knee—even while working out in the gym. At first I ignored it and just tried to put it aside, but I knew I had to see a specialist. Regarding the knee, I have had that surgery before and just assumed that I would recover completely within 2 or 3 months. However this has not been the case.

As of right now I am also trying to recover from back surgery (laminectomy) which also affects the knee. My “recovery” has not been what I expected—from both the laminectomy and knee surgery. Because my right leg is so weak, due to the injured spinal nerve, it has prevented the quadriceps muscle (thigh) from being strong and this affects the knee recovery. I am now using a cane because of my weak right leg and knee. My knees are so stiff and my right knee so painful that I can barely walk. This is probably due to having two anesthesias and surgeries back to back, or so I have been told. As a form of therapy, I decided to document my ordeal in the following posts.