Category Archives: Post Surgery Complications

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 2013 – Grateful for Recovery

March 18, 2013

It is amazing how twelve days can make such a world of difference. I am no longer getting home care because I am so much better and driving too. So many people take just plain walking for granted, and so did I, until I couldn’t. This whole hellish 6 months has actually given me a new understanding of people with disabilities. It has taught me to not take anything—even something as simple as walking—for granted anymore. I know that there is a finite period of time on this earth and I MUST live it to the fullest. I have to just conclude that this is a miracle of God that was bestowed on me and that there is a lesson to be learned. I have started back to the gym just to walk on the track (because there are handrails, just in case; I still get nervous when walking) and have also started doing some of the P.T. exercises I was doing with the therapist after my last surgery. I am very, very, determined to get back as much function as I can. At this rate, I think I will be good in a few months and will continue to improve more and more as time goes on. I finally have HOPE, something I have not had in 4 months. Every day when I can easily maneuver around without losing my balance, I am amazed, and who would’ve thought that something so seemingly simple could give me such joy? When I see people that knew me before this latest surgery, they say I am different, almost glowing. I feel that I have a shot at a life now, but I will not forget the months I spent as disabled, hobbling around with a cane, ready to fall over at the drop of a hat, not being able to lift my own leg into the car, being a menace on the road because my leg was sometimes unresponsive. I drove my car again last Wednesday and at first I was not used to the sensation of actually having power in my leg. But, after a few minutes, I got the hang of it and reveled in the feeling that I could stop perfectly whenever I wanted to. Before this surgery, I drove with my heart in my throat because sometimes my car would lurch forward when I didn’t expect it, almost hitting the car in front of me. I had so many close calls that I was thinking of not driving anymore, but I just vowed to be extra, extra, careful, putting my foot on the brake way before I had to and pressing hard. But, even then, it was such an effort to just lift my leg from the gas to the brake and back again because of extreme weakness. It is a blessing to just be able to drive normally again. It is almost as if I have awoken from a coma and now have to learn to walk normally again. My right leg was so atrophied from lack of proper use of the muscle but it is already starting to get some of the tone back. I am so grateful that words cannot even describe it. I find myself smiling more at people now and that in itself is miraculous.

Surgery Log 2013 -Surgery Again

February 23, 2013

I saw my original surgeon and she was very nice so I made the decision that I will go with her and her team again. Otherwise, I would have to start with someone else and wait even longer. I can only hope that I will have some major improvement, otherwise I do not know what else to do. Surgery will be on Friday, March 1st. I had a very hard day doing massage today and I am totally exhausted. Each time I’m in the massage room, I have to walk very slowly, and watch every step I take. I am always in fear of losing my balance and falling. I also have to apply for the Aflac disability again, which for some reason, makes me feel guilty. I know work is getting annoyed but I cannot help this. I hope there is no problem with the Aflac because I am counting on this to live for a while. I just must get better, I must.

Surgery Log 2013 – Massage and balance

February 8, 2013

I have been doing some massages lately. It is literally a balancing act. I find when I take my shoes off, I have better balance. But today I had a hot stone massage and I was worried since yesterday. First of all, I have to fill up the cooker, which entails bringing it to the sink and carrying it back. I had to ask one of the other therapists to do this for me. Then during the massage, I was nervous that I would lose my balance and fall in the room because you have to go back and forth to get the stones. It is much easier just doing a straight massage. I almost lost my balance once and it scared me to pieces but I caught myself in time. The whole massage I prayed over and over that I would not fall and I didn’t but I got out and told the receptionist to not book any hot stones for me at all until I am better. I saw the original doctor that I saw back in September and he actually took at lot of time to offer me some solutions. In addition, he is willing to explore more and thinks (as I do) that maybe, just maybe, the surgeon did not get all the areas decompressed. This is why he ordered a new MRI (I hope the insurance company pays for it) of the thoracic spine. I also still think that S1 is involved and he agrees. The surgeon I went to a few days ago told me there was nothing he could do but agreed to look at the MRI disk. As of this day, he has not done so. I need the disk to bring to my appointment with the new surgeon. Prior to the other appointment I was already planning to be told nothing further could be done, but he at least suggested that my weird symptoms in my stomach and back could be coming from the Thoracic spine. Sometimes it seems that I am getting very, very, slightly better (the belly does not feel as bad tonight) and my walking seems slightly better. Nobody at the spa has any idea that I feel so bad and that it is a miracle that I am able to do any massage at all. They say, “So, you’re back.” And I say, “just on a very limited basis.” I feel like a charity case when I am there and I get the impression that one of the new girls resents me. This little bit of work may dry up soon if the bookings don’t pick up, so we’ll see. I also have to try to believe that I will get better, eventually. But for today, I have to accept the way I am (but just for today). Tomorrow I have to tell myself the same thing; one day at a time.

Surgery Log 2013 – Medications

February 12, 2013

I have stopped taking all the medications that the doctors prescribed because they make my legs even more wobbly than normal. There are some days when I suddenly find myself miraculously “walking” almost normally. It is shocking and I am filled with so much hope that maybe I am starting to turn the corner. But then, the next day, I am often back to the same old thing. Some days my balance is actually pretty good and then, suddenly the next day, I have Jello for legs. It is like a roller coaster and each day is a new experience. I just wish that when I make a small improvement, it would last so I would feel that I was getting better, even if it takes a year or more. If I could just see some definite progress, and if I have progress, it would be so wonderful if I did not regress again. Maybe these little snippets of progress, like getting decent balance, or actually almost walking normally, or my leg working well when I drive, mean that there is some kind of improvement. Maybe this means that the nerve is healing. I know I am supposed to do my PT exercises and I do them religiously. However, every so often I don’t do anything and I seem to feel less pain, with better walking. I just cannot find a common denominator that tells me what works and what does not. I do know that I have to keep my muscles exercised so they won’t atrophy—-although my right leg has already done that. I must also guard against falling into the pit of depression, which is so easy to do. I can feel OK early in the day and by the evening, the unrelenting pain just gets me down and I can feel myself drifting into that abyss of hopelessness.

Surgery Log 2012 – December 31st – Happy New Year

Monday – December 31, 2012

Happy New year. I called the NS’s office and of course spoke with the nurse who told me that the EMG findings are nothing that would cause these symptoms. Apparently they indicate an old radiculopathy and nothing new. I was shocked that she did not even say she would speak to the NS to see what else could be done. I asked if she ever saw anything like that before and she said NO. So I said that basically they are dismissing me and she said she was sorry but they don’t know what else to do. I was at a meeting when I heard this and I left in a state of shock and sat in my car. I called a friend who has had problems too for the recommendation of her recent NS who she had success with. She gave me the name and I called. They cannot see me—if they even will see me—until the end of January. Apparently they need the records and also because my surgery is still so new they probably won’t even consider it. That is my guess and that leaves me nowhere. I am not even going to say what went through my head after that and I was in a fog. Ruth came over to the car to talk and we ended up going for coffee at Starbucks, which was a little relief. I then called my NS’s office and found out the procedure for sending medical records over to another doctor. It is done by snail mail and takes at least about 2 weeks. In the meantime, I must wait. The nurse at my current office said she will probably send me to see the occupational therapist to see my readiness for work, which is a joke. I am lost and I feel like I have run out of hope.

Surgery Log 2012 – EMG

EMG – Saturday – December 29th – I went for the EMG yesterday and it showed some abnormality in the L5 and S1 levels of the spine. He said that this may account for the peculiar symptoms that I have in my legs. Monday I am calling and requesting that they send me for a CT scan before my appointment on Jan 7th. If I need to have additional surgery, I don’t want then diddling around for a few more weeks before they get me in. I want to have it and begin the process of healing again. I saw Michael who has had lots of experience with botched back surgery and she suggested her doctor. But, who knows if I will get to see him. I will try the current doctors and if they keep waiting and waiting to see me, then I will try someone else. I cannot and will not live a half life, especially if there is a way to be fixed. These doctors have no compassion and they have no idea how horrific it is to wake up each day with absolutely no change and to be told to “be patient” when you know that something is totally wrong and you keep getting the run-around over and over. Of course I am not progressing; they didn’t totally address the problem!!! I will demand that they get the next test in ASAP and if they are uncooperative, I will see another doctor; simple as that!

Surgery Log 2012 – Christmas is Over

Wednesday – December, 26th

I’m happy Christmas is all over! I woke up with a case of very bad depression. I tried to shake it but it stuck with me all day, even though I went to Starbucks with my laptop and did various chores, I still felt like “everything was wrong” and I just cried on and off, even in the car. My knee started to give way at Walmart (my second home) but luckily the shopping cart (buggy down here) prevented me from going down. Still, it unnerved me and added to my morose mood. I was too depressed to actually make anything for supper so I settled for popcorn and leftover turkey. Also there is so much uncertainty associated with the Aflac disability which I still have not received for December. That lack of money coming in makes me frightened and depressed too. The Aflac agent never bothered to return my call—lovely! I kept calling myself fat and worthless and crippled. My state of mind prevented me from getting to a meeting but on a good note, when I came home, David called and wanted to Skype so I could see Henry. I also received the album that Joanne put together for Christmas; Henry’s first year. I even saw Joseph at David’s who is miraculously staying there for a few days. I ended up feeling a little better and know that God will take care of things if I just get out of the way. So, I will get to bed early and read. When I spoke with Joanne, she suggested that just like other illnesses, I will one day wake up and suddenly feel way better. That would be the best present ever in my entire life. I said maybe that will happen and maybe I should believe it. Maybe I am too negative and who knows what the future holds. It is all a mystery to me but I do know that at this point tonight, I have no more control of anything except what time I will clean the bird cages or go to bed. Good night!

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.