Laura - Spondylolisthesis Story (Grade 3)
When I was sixteen my mother took me to an Orthopedic Surgeon because she was constantly yelling at me to me to straighten my posture and to do so caused me pain. I was diagnosed with Spondylolisthesis Grade 1 at L5/S1. The doctor told me chances were the condition would never worsen past the grade 1 or pose me much problem. I took him at his word and lived a normal life, working physically demanding jobs with a few episodes of discomfort here and there. I got married, carried twins, and became a full time domestic engineer in 1994, and basically still lived a normal life.
Around 2000, when I turned 40, I started experiencing more episodes of discomfort and regularly went to a chiropractor for adjustments which seemed to help. The real trouble started around 2004 when strange vibrations triggered a sensation across my lower back and down my legs that I can not even describe. I either had to sit down or fall down. Terrified I made an appointment with an Orthopedic Surgeon and an MRI scan was ordered. My spondy had progressed from a grade 1 to a grade 2 but the doctor seemed to be unconcerned about serious complications and offered me pills or injections for pain relief, both of which I rejected. Instead, I increased my chiropractor visits and added deep tissue massage into the visit, which brought me a great deal of relief. I began walking three miles on the treadmill every day to strengthen my legs and back, and although I was experiencing more and more discomfort and episodes, I resolved to not take any pain relieves, including asprin, tylenol or the like.
In 2008 I lost my father and aunt both within seven months of one another, and since I was busy with running to doctors, hospitals and taking care of their needs, I totally ignorned what was happening in my own body. I stopped walking on the treadmill and only sporadically was able to get to the chiropractor. After my aunt passed away in March of 2009 I decided to get back on the treadmill only to find I could barely walk 1/4 of a mile before I was in severe pain. My "spondy waddle" - as I called it - became much more pronounced and even my husband became alarmed when I took his arm to walk back from an outdoor concert as I limped severely to my right side with each step I took. As if pain were not insult enough, the sheer exhaustion of walking compounded the problem. Now I had to think of how much walking had to be done whenever I decided to go anywhere. Housework that took me normally a day to finish, now took me three days, and I paid in pain for every chore. By this point I started to hear bone crackling noises as I bent over or straightened up. When I complained to my internal medicine doctor of the symptoms she suggested that I go to physical therapy and strengthen my back muscles. She believed that this would make a huge difference in my condition. Physical therapy did nothing to improve my condition and my chiropractor finally admitted that she could no longer help me either. I was reluctant to return to the Orthopedic Surgeon, as he had not suggested surgery and I knew pills were not the answer for me. So I did nothing.
For three long years I suffered without remedy. I slept on the couch for two years so that I could constantly move my legs around to try and stop the vibrations that kept me up half the night. I used a heating pad to try and relieve the pain. Many nights I cried myself to sleep only to get up in the morning to the same pain and limitations. I became depressed and irritable. My world grew smaller and smaller. Finally, after running out of options, I returned to the Orthopedic Surgeon in 2012 and was sent for my last MRI. After reviewing the results, this time the Orthopedic Surgeon was ready to talk surgery. My spondy was almost a grade 3; I had severe Spinal Stenosis and my nerve roots were bilaterally severely compressed. I wasn't offered pills or injections, only surgery. I went for three opinions before deciding on surgery: Two from Orthopedic Surgeons and one from a Neurosurgeon. In truth I liked some of what each had to say, but not all from any one of them. The first Ortho told me he would pull the vetebra back only as far as it was willing to go and fuse me at that point. He wanted to enter from both the front and the back, and have a Neurosurgeon preform the surgery with him. Total time on the table would be about 7 hours. The second opinion was from a Neurosurgeon, whom, while he would preform the surgery if I wanted it, believed it was still not necessary at this point and I could be suffering from Fibromyalgia, and that maybe supplements could help me. He would operate only from the back and total time on the table was 5 hours. I knew this guy was nuts. The third doctor, another Ortho Surgeon, would pull the vertebra completely back into place, fuse and only operate from the back, total time on the table was estimated at 2-3 hours. Three doctors - three completely different opinions. I went to my internist, whom I trust, and she believed that the third opinion made the most sense. But because I had gotten such different opinions, I hesitated once again and did nothing, but the pain and limitations forced me to make the decision for surgery. I picked the last Orthopedic Surgeon and scheduled surgery.
I had my first surgery on August 14, 2012. I expected far worse pain in my back, but woke up with pain in my feet and Sciatica on my left side. I read horror stories on the internet of getting out of bed and walking for the first time after surgery. For me, I had worse pain for years prior to surgery. The Sciatica was however, horrific, and I had not experienced pain or cramping in my toes EVER before. The surgeon told me it might take six months for the nerves to heal, but the pain would go away. He was less helpful concerning the Sciatica. Between the pain pills and the muscle relaxers, I remember very little of the four days I spent in the hospital, and even though I had a slight fever I was sent home. I was in horrible pain for the first four days I was home due to the Sciatica and the toe pain. No one had told me that foot pain is a common problem after surgery. I can liken the pain to someone sticking an ice pick through your big toe at random and the cramping as charlie horses. I was on a constant diet of pain killers, and slept constantly from them. On the fourth day I began to feel chills and my temperature spiked to 102.4. I went to my internist, who promptly returned me to the hospital and contacted my Ortho doctor, who was out of town. His associate reviewed a CATscan that had been done in the hospital when I first complained of the Sciatica and reviewed the scan with a Neurosurgeon. They both concurred that they needed to go back in and open me back up and search for infection.
On August 25th I went into surgery again. While they could not find the source of the infection, they did find a small puncture wound in Spinal Sac that could have been leaking spinal fluid, which could have been the cause of the infection. The Neurosurgeon, God-Bless him, also cleaned out the nerve roots and stopped my Sciatica. I was put on Vancomycin immediately following surgery. If you are not familiar with antibiotic medications, it is considered the antibiotic of last resort. It is a powerful powerful drug. I also had to have a blood transfusion, as I was severely Anemic. After three days I was sent home from the hospital with a PICC line (a catheter inserted into the arm that delivers the antibiotics intravenously). A pharmacy delievered weekly doses of Vancomycin to the house. I had to have my blood drawn weekly (which should have been twice a week) to insure that my body was handling the Vancomycin. The course was for 6 weeks but the Vancomycin hit my kidneys at 4 weeks and I had to be given an antibiotic (and I do not know the name of it) that proves to have no side effects but at a cost of $1,000.00 a dose. I stayed on that antibiotic for one week and then was relieved of the PICC line at the hospital. I had a scare shortly after release of a low grade fever that turned out to be a Urinary Tract Infection, but I had to go through the whole blood culture testing again, and for someone who was anemic, giving that much blood for the second time just put me further behind. It took four weeks for my kidney function to return to normal but I had no symptoms of anything wrong with my kidneys other then a constant salt taste in my mouth and all food tasting like salt. From August 14th through the end of September I lost 20lbs, an immense amount of strength and I was close to a nervous breakdown.
I tell this story because it is exactly these type of complications that I was not informed enough about or told about at all. I was told that infection CAN happen, but is rare. I don't think it's as rare as the doctors would have you believe. In fact, my neighbor had surgery soon after mine and ended up with a bone infection soon after surgery. So it can't be that rare. And if foot pain is common after surgery, why not inform the patient that it might be coming? The key here is to be more informed than I was and ask questions, or simply ask for everything that could go wrong so you're prepared before you make a decision for surgery. I don't want to scare anyone away from surgery, not for a minute. It's an individual choice that can only be made by the person that is suffering. I don't know how all my symptoms will end up by August, a year after surgery, but I do know this. I am now walking a mile a day. That's 3/4 of a mile more then I could do before surgery. I can stand in one place for fifteen to twenty minutes, when before surgery I could barely stand still for a minute or two. I am back sleeping in my bed, and while I still have the vibrations occasionally in my back, they no longer spread to my legs and do not happen very often or with much intensity. I walk with a cane still when I go out, but in the house I am cane free. I still waddle and limp somewhat but I am only five months post surgery and I am working on strengthening my muscles and trying to correct years of walking incorrectly. I'm still scared because the fear is within me that something else will go wrong. In November I lost about a third of my hair from surgery, stress, antibiotics ... who knows? But three months after surgery it's common. Again ... who knew? Certainly not me! I went to the dentist to have a broken tooth filled and found out the dentist won't touch me until I have swallowed four antibiotic pills one hour prior to the appointment...they won't even clean my teeth unless I am dosed up. It's a constant learning curve and it can be frustrating beyond frustrating.
Another point is that I went through my years of Spondylolisthesis ALONE. The internet was not around, nor did I know anyone that I could talk to that had this condition (although I strongly believe my father had it and was hunched over the last ten years of his life and suffered back pain all his life). I still had no access to anyone who was suffering the same symptoms as I was, or in the pain I was. I chose not to go the route of pain relievers because I know my body and I felt that in order to bear the pain I had to internally control it or it would end up consuming me body and soul. Support from other sufferers would have meant the world to me. Knowledge of what I was up against with surgery would have helped dramatically. I'm not sorry I choose surgery, although the jury is still out on the ultimate outcome. I was told I would end up in a wheelchair eventually, and indeed my nerves were severely compressed and will take a long time to heal. There is no perfect solution, no perfect choice. This disease is isolating, frightening, frustrating, debilitating and demoralizing. If my story helps one person out there suffering then that's one person who isn't alone anymore.
- Laura
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