My Story - Part One 1992-2003

The first time I had a problem with my spine was in 1992 while I was pregnant with my son. I had been lying on the couch, and when I tried to get up from the couch my back went out. I ended up crawling on the floor for a few minutes until I felt safe enough to pull myself up to a standing position using a piece of furniture for help. There was not any pain, and once I was standing everything seemed normal again.

Although there were a few other times that my back went out briefly, it was in 1996 that I actually experienced any pain. I had bent over to pick something up off the floor, and I felt a stab of pain in my lower back that radiated into my left leg. For approximately three weeks, my lower back had excruciating pain along with the radiating leg pain.

It was not until late 1996 that I first sought medical treatment. After a few more times of my back hurting with the accompanying leg pain, I went to my primary doctor. Additionally I had left hip pain and a crunching sound that had developed. He initially did an x-ray of my hip for arthritis, but not of my spine, because he stated that he thought I only had a pulled muscle or that I was just under stress, so he gave me a prescription for Naprosyn. The x-ray of the hip was negative for arthritis, so he said that the pain was probably because I smoked or I was probably under stress. On about the third visit to this doctor for the same issues I asked if there were any other tests that could be done to try to find the underlying cause of the pain. He said that the only other test was an MRI and he would not order it, because he did not think it was necessary. Again, he reiterated that I was probably just stressed, needed to quit smoking, and that possibly I was suffering from depression. He stated that people my age did not have true back problems. I was 27 years old at the time. I decided that I was not going to return to a doctor about these issues.

Now we will fast forward to 1999 - 2000. I had a new primary doctor who acknowledged my back and hip pain, but again this one would not do any further testing due to my age. He, like the other doctor, suggested that I was either stressed or depressed and prescribed an anti-depressant. I knew I was not depressed, but I told him I would try it anyway. Needless to say that after a few months I told him I was not going to take it anymore, because it put me in a fog. He prescribed another one, to see if it would help. This one had the same result.

About the same time, I began having occipital headaches, which ran from my neck through the back of my head. I also began having blurred vision, which appeared to coincide with the headaches. Additionally, I began having some sort of pain under my right rib cage that would sometimes last for minutes or sometimes for days. This pain felt very muscular in nature, almost as if the upper abdominal muscles were tight from doing 1000 sit-ups. I had to go into his office a few times to get a shot to relieve the headaches. On the final visit for the headaches, my regular doctor was not available, so I saw another doctor at the office. He noted that I had been in several times for the headaches, so he decided to do a neurological exam. Based on that exam he suggested that he saw findings equivalent to early Multiple Sclerosis and that I needed to be followed up by my primary for a referral to a Neurologist. Additionally, he ordered an ultrasound to check for gallstones, which came up negative. When I went back to my primary doctor, he stated that he was not very interested in testing for Multiple Sclerosis, since there is not anything that can be done about it anyway with respect to treatment. I immediately began looking for a new doctor.

My new doctor turned out to be wonderful, although he did ask me to try the
anti-depressant route as the others had. Since he was willing to begin testing for physical problems as well, I went along with trying the anti-depressants. Within three months, he agreed that depression was not the issue, and I discontinued the anti-depressants, except for taking a small dosage of Amytriptelene for leg pain, which I was now having. He was able to rule out everything that he could through blood tests. He noted that I had winging of my right scapula and that my right shoulder was much lower than the left. Scoliosis was not an issue, and my leg lengths were equal. A Rheumatologist ruled out Fibromyalgia, but she was very concerned that I had bilateral leg weakness and pain. I had an MRI of the brain, which was normal. The MRI of the cervical spine noted a hard disc herniation at the C4-5 level that was “touching” the spinal cord. My lower spine showed disc herniations at L4-5, L5-S1, and other various signs of degeneration throughout the entire lumbar spine.

I was referred to a neurologist for assessment of Multiple Sclerosis. After spending approximately 30 minutes with me on the first visit and 15 minutes the second visit, he announced that he thought that I was just severely depressed and did not realize it. He said that the cervical herniation had nothing to do with my problems, although he never actually reviewed the MRI film. Additionally, he stated that my headaches were probably stress related and that many women in their early thirties begin having headaches due to hormone fluctuations. He tried prescribing another anti-depressant, and I told him I would not take it.

I was referred to another neurologist through my insurance, but he stated that he did not have any answers. I temporarily stopped trying to get any answers until after an incident that scared me half to death. I had an incident where all of a sudden I got extremely dizzy with vertigo and collapsed. The paramedics came and determined that I had not had a stroke. My ex-husband took me to urgent care the next morning. I was still unable to sit up or stand. It was determined again that I had not had a stroke. I was told that I probably had an inner ear problem, but there were not any tests to determine that. I was sent home. I was able to walk by the following day, but walked off-balance, looked like a drunk, for about three weeks. From that time on, I would continue to have vertigo and dizzy spells to a much lesser degree. I also began experiencing walking difficulties. It felt like my legs would get heavier and heavier the longer distance I walked, until it was too much of an effort to move anymore. They also began to give out, and I am very lucky that I was always able to grab onto something in order to prevent falling.

In 2001 I decided to see a Neurologist outside of my insurance to finally rule out Multiple Sclerosis. I contacted the Multiple Sclerosis Society who referred me to a doctor who specialized in Multiple Sclerosis. Although he did not believe that my problems were associated with MS, he did contact my primary doctor and let him know that they needed to finish testing for MS in order to completely rule it out. Therefore, my insurance did pay for an MRI of the thoracic spine, another MRI of my brain, evoked potentials, and a lumbar puncture. All tests came back normal, so MS was finally ruled out. Since there were findings during my neuro exam that he performed, he diagnosed myelopathy.

My primary doctor was hesitant to send me to a Neurosurgeon, because the first Neurologist that he had sent me to specifically stated that my problems were “not” due to my spine. Remember, he never physically saw the MRI and was only going off the radiologist’s report. Therefore, I spent several months taking painkillers, muscle relaxers, and going through physical therapy. Finally, the physical therapist said that he could not help me anymore and would let my primary doctor know. My legs had gotten very weak by this point, and physical therapy was not going to fix that problem.

I was finally sent to a Neurosurgeon in June of 2003. I was told to bring copies of my MRI. The surgeon examined me and looked at the films. He then pointed out to me where the hard disc was actually damaging the spinal cord at the C4-5 level. This was evident by a color change from black, which was how the rest of the spinal cord appeared, to white at the point where the damage was being done. He immediately began setting me up for surgery. My doctor was still hesitant about having me undergo surgery and only agreed after he spoke directly with the surgeon.

I had the surgery in August 2003. After the surgery I no longer had headaches, my legs did not feel heavy, the vertigo abated, and within about a year my leg strength appeared to be near normal. In hindsight, the only real issues that remained were the muscular lower rib cage pain, leg pain, and slowed walking. Because of the slowed walking, I believe I confused later specialists, because I never differentiated between the walking problems prior to surgery and after the surgery. I just used the term, “same walking problems” which was not accurate. It was within 6 months post surgery that the remaining problems and new emerging symptoms would set me on a new quest for answers.