Category Archives: Chronic Pain

How to cope with chronic pain and the emotional toll it takes on our psyche.

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.

Faith

Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace my doctor ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.

Surgery log 2013 – Spinal surgery

March 6, 2013

Surgery was 6 days ago and I am still having pain in my chest. I was told it is due to chondritis (inflammation of cartilage between ribs) due to the back surgery. In the hospital, I am sure the staff must have thought I was a baby. They had absolutely no idea how really terrible I felt between the incision in the back (quite long), the reflux in my belly due to the pain meds, and the horrendously painful chest. Every time the physical therapists came around, I was in severe, severe, chest pain which impeded my progress with the walking. However, I must have still done decently because I did not quality for in-patient rehab. I am actually very glad that I went home because there truly is “no place like home”, at least for me. They gave me a shot in the hospital of Toradol for the inflammation in my chest. It made a world of difference, but once the shot wore off, the pain started in again with a vengeance. By the time I wanted to sleep, it was impossible due to the belly and chest pain. I got almost no sleep last night. I called the office and they prescribed oral Toradol, which I can only take for 5 days at the most. Unfortunately I ended up eating too much for dinner which is now causing pain in my chest again, just in time for bed. I hope I will not have another bad night. It is worse when I sit or lay down. It seems the less I eat, the better I am. I am done with feeling horrible—-it is time for me to get better and start living a real life. Unfortunately, my legs are still stiff as a board but that might be due to the trauma of the surgery. But, on a good note, my right leg has improved drastically and I am able to move it on its own, rather than me lifting it up with my hands. That’s major and hopefully, the other nerve problems will improve over time. At least the leg issue seems to have resolved immediately.

Surgery Log 2013 – Meningioma

February 17, 2013

Well, lo and behold, the MRI ordered by the D.O. in the practice revealed a thoracic meningioma at T3. My question is why the hell the surgeon did not explore that possibility too. I read an article on the Internet “Paraplegia due to missed thoracic meningioma after laminotomy for lumbar spinal stenosis.” It says, “Surgeons should know that a silent meningioma can aggrevate neurological symptoms after lower lumbar spine surgery and should inform the patient.” OK, apparently my neurosurgeon did not know that. All this time, her PA and nurse kept saying that they have never seen anything like this before. Well, you are a nurse, not a surgeon so don’t say that to me. Her PA kept smiling at me and saying there was nothing more they could do. When I asked if there was additional testing they should be doing she said, NO. What the blank (not the real word) are they thinking? Secondly, all this time I was not getting better should have alerted them that maybe they should do an MRI of the thoracic region. This to me is negligence based on not ordering the proper tests, not knowing that a silent meningioma can aggrevate symptoms after a lumbar laminectomy, and just dismissing me. If the D.O. had not been a good doctor, who knows how much longer I would be suffering. After a month of me getting worse, she should have ordered an MRI of the thoracic area not one of the area she already operated on. I have an appointment with her tomorrow, but I do not want to use her as the surgeon again. But, I absolutely need to have this taken care of ASAP because I am suffering and cannot continue to live with this pain, stiffness, lack of balance, and not being able to walk properly. It is a nightmare that I hope will end soon and there will be a good ending finally.

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 2013 – Driving

February 3, 2013

I had a problem with my driving yesterday when I accidentally pressed the accelerator rather than the gas because my stupid foot does that. I always think that only super old folks do that, but this scared me so much I couldn’t believe it. Luckily I swerved and put the brakes on in time. I went outside today to drive over and over in a lot practicing stopping, going, braking, etc. I just have to be ever vigilant about where my foot is. I had a total meltdown today about my lack of balance and lack of money coming into this house. Tuesday I have the appointment with the new doctor, recommended by Michael, but I have no real expectations. I have some hope, but hope is different from expectations. If I could just get somewhat better to the point that I could function relatively normally, I would be so grateful. I keep thinking about how much more of this I can take and I just do not know. I pray every day that there is a good resolution to this. In the meantime I am trying to do some work, but my balance is sometimes so off that I can’t stand properly. I am filled with extreme fear that this is going to be my life and I just cannot continue on like this. I also contacted another doctor on line for an appointment. I read his bio and he seems like someone who may be able to help me. The thing is, when do you decide to throw in the towel? When do you decide that you will not try to get better anymore? I go to the pool and sometimes the burning in my legs is even worse. I never know what will bring me some relief or what will cause me to feel worse. Sometimes something works once and then the next day it doesn’t. I am living in a nightmare that I cannot wake up from. I have limited monetary resources at this point and I am freaking out, with no work, no disability, no nothing.

Surgery Log 2013 – Spa Service

Tuesday, January 29, 2013

Last Monday I agreed to do a spa service and massage on Saturday. Saturday morning I woke up practically unable to walk at all. My right leg kept giving out on me and I was going to cancel the service, but as the morning wore on, I started to walk decently. I was very nervous about the service but it came off OK. I still feel like a freak when I “walk” because if I don’t use my cane, I have to limp extensively. But in the massage room, I could at least hold onto the credenza and wall, or lean a bit on the table. I took off my shoes and I walked much better with better balance. I think I did a good service and the client gave me a $25 tip; she also seemed to enjoy it. So, apparently, if I am not feeling too bad, I actually can do massages. I sent out some texts to clients who said they will call, etc. One client said she is so glad that I am back to work now—little does she know that I am really just as bad as I was a month ago because there is absolutely no improvement at all; I just learn to “live with it” for now and do the best I can. I went to a meeting and everyone has a pitying expression and say, “I’m so sorry” to me over and over. That makes me feel so terrible and I want to not go out in public any more. Each night I pray that I find a doctor to help me feel better and at least get a little improvement, but each morning I awake with the same exact symptoms and feel so let down. This morning my clock radio played “Evil Ways” by Santana and it brought back memories of me dancing to that when I was a teenager. I have to be careful to not keep reminiscing because it brings on depression, something I cannot afford. I am also dealing with lots of jealousy of people doing just mundane things and not thinking about it, such as running, walking normally, just living their life without having to constantly be monitoring their every move or their body. I think the people in the Midday Group are used to me being “crippled” and they don’t keep telling me how “sorry” they are and that makes me feel more accepted and less freakish. I am scared to death that this new doctor will give me the same old song and dance about how he cannot help me and I will simply fall to pieces at that point. God, please help me find the doctor to help me get better and get a life back.

Surgery Log 2013 – Acupuncture

Tuesday – January 22, 2013

I had acupuncture yesterday and for some reason, I felt horrendous by the evening. My pain level was super, duper high and I cried. I took Gabapentin about 3 in the morning and woke up woozy, dizzy, and wobbly. It took me forever to get myself out of the house but when I did, I began to feel decent. I don’t know what it was, but maybe it was the acupuncture and it just takes time to see the results. I also sent a letter to my orthopedic doctor for him to possibly sign off on a parking decal for me. It shocks everyone that the NS would not do this for me. So far, no response at all. I also called a pain management doctor that Claudia (adapted aquatics director at the Y) told me about. She wants to hire me as a massage therapist but I told her I just cannot commit to this because of my physical status at this point. Laurie wants me to go back too and I am actually going to do a service this Saturday; hopefully I won’t have any problems at all. But, could I do this on a regular basis, NO. It is amazing how much better you feel when your pain level is not too bad. I say, “Not too bad” because it is never gone, but sometimes it is tolerable. Then I feel almost elated. I also sometimes can walk halfway decently but I am still nervous to go outside without the cane. Maybe I will get better. I have that appointment for a second opinion with Michael’s doctor she used for her back surgery (after someone in Augusta Back screwed up her original surgery). I am not holding any high hopes but I wish that he would at least run possibly a CT scan or something to find out if there is indeed a problem. I don’t know, but I hope that God doesn’t let me down. I want to get out from under this nightmare and live some sort of life again.

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.