Hi there! First post here.
Need to vent a little bit, if no one minds. Waiting for some answers, and having a hard time not freaking out in the meantime. Input or advice, or anything, really, would be appreciated.
I’m a thirty-year old female lawyer. About 3.5 months ago, I started having left-sided low back discomfort, and noticed numbness in an L5 distribution down my left leg, including a sensation of numbness in my shin and the top of my foot. I had experienced identical symptoms in the past on two occasions over the last two years, but they lasted for a couple days and then went away without further problem.
After a week, the numbness down my shin and top of my left foot was still there, and the low back pain was severe. I’m not much on doctoring, so I don’t have a primary physician. I ended up making a Friday evening trip to an urgent care clinic because the low back pain was simply too much to tolerate. I was told I have “sciatica,” given a prednisone taper, and instructed to follow up with another physician if my symptoms didn’t resolve within a week.
Of course they didn’t resolve, although I will say the low back pain was improved. There was, however, no improvement of the symptoms in the L5 distribution of my left leg, and increasingly severe burning pain in that distribution, especially at night. Because of the line of work I’m in, I strongly suspected a lumbar disc herniation compressing the left L5 nerve root, so I scheduled an appointment at a spine specialty practice that I’m familiar with. Since I had no prior scans, I had to doctor through a P.A. to begin with. Very brief muscle testing revealed some weakness in the hallux extensor (big toe) muscle, normal or slightly depressed reflexes, and no other pathological signs. Due to the muscle weakness, my P.A. decided to get me in for a lumbar MRI right away, and gave me another prednisone taper.
During this time, I also started noticing similar burning pain wrapping around from the left low back around my left hip, and radiating from belly button to groin. At first, I would notice it when I was driving, and I thought maybe my seatbelt was just pinching or something, but then it became pretty much constant, and severe.
My lumbar MRI was negative at the suspicious lower levels, other than some mild degenerative bulging at L5-S1. Except, I had a 3 mm right and central extruded disc at L1-2, migrated up behind the L1 lumbar vertebrae. It did not appear to be compressing any nerve roots, and the spinal canal was not being compromised. I also had 4 mm left and central extruded disc at T11-12, migrated up behind the T11 vertebrae. Again, that did not appear to be compressing any nerve roots or the spinal cord. The MRI was also read as evidencing moderate degeneration throughout the thoracolumbar junction, consistent with underlying Scheuermann’s (juvenile disc disease). My P.A. didn’t think that these two disc herniations were causing me problems. He also gave me a prescription for 200 m.g. of Neurontin 2(x) per day after I specifically asked if there was something I could do to help control my pain. By this time, the pain in my legs at night was causing me serious sleep difficulties.
I also decided at this time, to mention the mild-to-occasionally-moderate mid-back pain (a couple inches below my bra) that I’d had for the last few years, ever since a horse-riding accident. I had never sought out medical treatment for that issue, because everyone has occasional back pain, right? Due to my profession, I know a lot more about anatomy of the spine than the average Josephine, which is both a blessing and a curse. I didn’t mention the mid-back pain at first, because based on my assumption as to what my problem was (an L4-5 herniated disc), I didn’t think it was relevant.
By this time, I was also starting to get muscle twitches in both legs, particularly in the hamstrings. They weren’t constant, and I figured it was just because I was sore.
Since my lumbar MRI didn’t show anything in the obvious areas, I was referred for an EMG. The EMG of my left leg was normal, of course. The test itself was not a big deal pain-wise, but the pain in my upper thigh, groin area, and hip was severe for about a day after that.
I also started PT with a wonderful physical therapist, who did believe that the two disc herniations could very well be causing my problems. She told me that the type of herniations I have are extremely rare, and she had never seen a case like mine. We started traction which did provide some temporary reduction in my pain levels in both my wrap around hip pain, and my leg pain. My left-sided low back pain was gone by this time.
I then underwent bilateral epidural injections at L5-S1 to see if that gave me any relief and/or provided a diagnostic response. My left leg felt numb for about an hour, but provided zero relief after that. My P.A., however, decided that this was, in fact, a diagnostic response, and recommended that I try another round of injections. He also referred me for a positional MRI of my lumbar spine, basically to see if I had lower lumbar herniation that was related to position. Thankfully, my insurance covers positional MRI’s in some cases, including mine.
My muscle twitches were becoming more constant by this time, in both hamstrings, and in my calves. I was also getting full-on cramps in my calf and hamstring in the morning in my right leg. My hip, abdominal and groin pain was severe.
Seated MRI again revealed nothing in the lower levels of the lumbar spine, but the extruded disc at T11-12 in the seated position was contacting and flattening my spinal cord. Based on that finding, my P.A. recommended I try an epidural injection at T11-12. He also upped my Neurontin to 600 mg per day since the prior dose was giving me no pain control.
The injection at T11-12 was horribly, horribly painful compared with the injections at L5-S1. My paraspinal muscles went into severe spasms when I was being injected. I will say, however, that I got almost 12 hours of complete pain relief following this injection. I didn’t feel normal, but I was pain free for about half a day. Post-injection, I developed a new symptom, unfortunately. I was trying to put my hair in a pony tail the day after my injection, and when I put my head down, I had the most excruciating searing pain in the center of my spine, exactly where my injection took place, that almost brought me to my knees. That lasted for about a week. Any forward bending of my head, or flexion of my upper back caused severe pain in my mid-spine, exactly where my T11-12 disc herniation is at.
When I told my physical therapist about this stabbing back pain she grew concerned about possible spinal cord compression. She tested for Babinski and Hoffman’s, and I had no response. I had also started to develop burning pain in my upper inner thigh, groin, and perianal area on the left. My physical therapist basically told me that I needed to insist on seeing a surgeon, and that the type of the traction didn’t seem to be doing me any significant good. I’d get a day or two of a reduction in my pain after traction, but overall my condition was worsening. I am absolutely grateful for her advice and care.
I asked to be seen by an orthopedic surgeon, and was scheduled for about two weeks later. By the time I was seen, the burning pain wrapping from my hip to my belly button and groin had almost completely resolved. The surgeon thought that maybe the T11-12 injection had taken care of that problem. After looking at my scans, he thought the T11-12 disc was probably responsible for my problems and that my L1-2 disc was in bad shape, too. He said he could do a three-level fusion, but may be able to avoid fusing me because of my lack of significant back pain. Thoracic fusions are a major, major surgery. He referred me to his colleague, who is a neurosurgeon for a consult about possibly doing a discectomy at T11-12. Before sending me on my way, he had me do some maneuvers, and definitively ruled out SI joint dysfunction. He also decided to test my reflexes, just using his fingers. To his (and my) surprise, my left patellar and Achilles’ reflexes were hyperactive on the left compared to the right. The last time my Achilles’ reflex had been tested, they were barely able to get a response. He also ordered a thoracic MRI (if you are keeping track, this is MRI number three).
My neurosurgeon was a lovely person. She tested my patellar and Achilles’ reflexes, which were hyperactive on both legs, more so on the left. In fact, just touching me near my left knee would trigger a response. She also tested my reflexes in my upper extremity, which also appeared to be hyperactive. My neurosurgeon said that you can have hyperactive reflexes in the upper extremity if you are thin….She was also able to feel the muscle twitches (fasciculations) in my right calf while testing my reflexes. By this time, I was having nearly constant muscle twitches throughout both legs, and in my abdominal area – more or less from the waist down. I had also started to have an occasional twitch in my left triceps, and in my eye. I’d had those from time-to-time in the past, and chalked it up to tiredness or stress, which was usually when I’d experience twitches like those in the past. She also tested my muscle strength of my lower extremities. It was obvious that my strength was significantly reduced in all of the muscles in my lower extremities. I hadn’t even realized it. By that time, I was also having a sensation of difficulty starting urine flow, even when I had to go really, really bad.
Based on my physical exam, she dropped a bomb on me. I needed to have surgery, and I needed it yesterday. I was in a gray area in terms of permanent damage. She felt the T11-12 disc extrusion, although it wasn’t massive, was responsible for causing spinal cord compression. The thoracic MRI revealed some other small herniations or bulges, but nothing as obvious as the T11-12 extrusion. This consultation was on a Thursday, and she wanted me in surgery by Monday or Tuesday. She was going to do laminectomies and discectomies at both T11-12 and L1-2 and also do a non-instrumented fusion at L1-2 with artificial bone graft. To rule out any possible compressive lesion in any higher levels of the spine, and just to be on the safe side to rule out MS or ALS, she also referred me for urgent cervical spine and brain MRI’s. She gave me her cell phone number to call me when I had completed the scans. After she had reviewed them, just to make sure nothing else was going on, we would schedule surgery early the following week.
I called my husband in tears. I called my boss and talked out how we were going to manage with me being out and then on reduced speed for at least several weeks. My law firm is two attorneys and four staff. Me being gone, for even a day or two, puts a huge strain on the office. I went into the office and sat the staff down and informed them there was a strong likelihood that I was going in for surgery next week, and we discussed how we were going to proceed.
I had the MRI’s that Friday afternoon. Cervical spine MRI, and MRI of the brain with and without contrast. They had to stick me three times to get an IV in for the contrast. This was MRI number four and five within a three month period. My prior MRI’s were no big deal, but these MRI’s, which took about an hour and forty-five minutes, were almost intolerable. It seems like the vibrations of the machine were triggering my muscle twitches. My legs were on fire and twitching for the whole time, and I couldn’t move. I called my neurosurgeon as soon as I was done and she told me she was trying to get access to my scans over the weekend and to expect a call from her on Sunday or Monday.
I was at work Monday morning, when I got her call. She told me my cervical spine looked great, but that my brain MRI was abnormal. Abnormal. Abnormal.
For the rest of the conversation, my head was spinning. She told me that there was an abnormality. Both she and the radiologist felt that it didn’t look like MS, but that it couldn’t be ruled out. She said it could be an old injury, etc., but they just didn’t know for sure. She also told me that “it,” whatever “it” is, is in an area that would not necessarily correlate with my symptoms. Being in a state of shock, the types of questions I should have asked did not come to me. I did manage to ask her if she could tell whether “it” was old or new, and she said she couldn’t tell.
She wanted me to be seen by a neurologist for a full work up, since I had not undergone a full neurological work up, prior to surgery. But, she also was worried about waiting too long to proceed with surgery due to the increasing risk of permanent damage. She told me she was going to call around and try to get me in to a neurologist on an urgent basis. If she could get me in quickly, she would recommend holding off on proceeding with surgery. If not, she would recommend proceed with surgery. She said she was basically leaving the decision up to me. She told me that if it was her, she would proceed with the surgery, because of the potential risk of permanent spinal cord damage. I sat in my office, stunned, and in tears, with my head spinning. If I had had my wits about me, I would have told her that she’s literally the brain surgeon in this conversation—she should be telling me what to do.
I got a call back from her shortly thereafter. She said she had talked to three different neurologists who thought it prudent to do the workup prior to surgery. They could get me in within 10 days.
I received a call from the neurologist’s office the next day scheduling me for nine days out, which was the soonest they could get me in. I about blew a gasket when they called me the next day and tried to cancel my appointment, which, after I spoke with a nurse, was rescheduled to the same day, with the same doctor, fifteen minutes later. Working at a law firm, this set of circumstances can mean only one thing…the neurologist wanted to golf in the afternoon, and instructed his staff to cancel his afternoon appointments. When one of his patients called up screaming, he agreed to post-pone his tee time. Already I’m not feeling great about this situation.
In the interim, my neurologist texted me (which I think is kind of cool and strange at the same time), to confirm I had an appointment. She said he should have all of my records, and the goal of the exam is to get the neurologist’s opinion as to whether my symptoms are stemming from my thoracic disc herniation, or as to whether the evidence points in another direction, warranting further work-up.
My neurology appointment is next Wednesday. I’m trying to keep functioning in the meantime, but the stress of first being told I need to undergo an immediate surgery on two levels of my spine, trying to prepare for that mentally, and trying to sort that out at work, and then being told that I have a brain abnormality of some sort…this has been a really, really rough week. I’m trying to avoid the temptation of trying to read my own brain scan and trying to keep my online research to a minimum. I’m trying to avoid the temptation to over-analyze ever little sensation that I experience. I’m trying to avoid texting my neurosurgeon with a million and one questions. I’m trying not to be afraid for my future.
Right now, I continue to have burning and numbness in an L5 distribution in my left leg, including an extension into the bottom of my foot. I have burning pains in my upper inner thighs. I have numbness in my perianal area which comes and goes. My hamstrings constantly feel like I just finished running a sprint. I’m having difficulty standing up from a seated position, and this seems to be getting a little worse every day. I’m not sleeping worth a darn due to pain and stress, which of course compounds things. I’m exhausted, probably in part, due to the lack of sleep. I have near constant fasciculations in my legs, my abdomen, and a few here and there, primary in my left upper extremity, and in my eye, and once in a while, my lip.
Thanks for reading my rant. Any comments, questions, insight are definitely appreciated.