Spinal ependymoma: a personal account

By Bill Anschell (blog moderator)

(NOTE:  Although this is published in the form of a blog, I would prefer that readers not post comments.  It is intended as a documentation of my surgery for, and subsequent recovery from, an ependymoma of the spinal cord.  The "comments" that follow my initial post are updates from me detailing various points in the recovery process.  If you would like to give me feedback or ask for advice, please email me directly at billanschell@mindspring.com.  Above all, as I do throughout this blog, I encourage you to join the community of spinal cord tumor patients - both pre- and post-surgery - at www.spinalcordtumor.org, which is an enormously valuable resource.)

The fact that you found your way here probably means that you or someone close to you has been diagnosed with a spinal ependymoma, or perhaps an as yet unknown spinal cord tumor. That was my situation in early August of 2005, when MRIs indicated a probable ependymoma, with a lesser chance of an astrocytoma.

I immediately began doing the same thing you’re in the midst of: Searching the internet for articles that might help me understand exactly what I was facing. And I discovered what you’ve no doubt found as well: Spinal cord tumors are so uncommon that there are no user-friendly, comprehensive and conclusive articles on them. With no apparent centralized database or controlled scientific studies in place, the best you can do is to read the many (sometimes contradictory) clinical articles by neurosurgeons and other doctors around the world, and piece together your own best interpretation.

That’s what I did, as exhaustively as my unprofessional research skills allowed. It left me with a pretty good understanding of spinal ependymomas (or, at least, my particular tumor, which was an intramedullary thoracic one at T10 – 11). It also revealed that there are apparently no published personal accounts of the experience – from diagnosis, to surgery, to rehabilitation and beyond. Nor are there any websites specifically devoted to the subject. Knowing how much I would have appreciated those resources when I was in the thick of it, I decided to put together this blog. (NOTE: I subsequently have discovered www.spinalcordtumor.org, a very helpful resource. I discuss it more in my follow-up postings).

So, I’ll start by telling my own story in full gory detail, and hope that others will follow suit. The disclaimers should be obvious: I’ve assimilated the articles I’ve read, augmented by brief discussions with the surgeons involved in my case, and reached conclusions that in some instances may be simply my best guess. I’ve tried to be clear about which of my points are “greyer” than others. So please view my word for no more than what it is: a fellow patient’s unscientific attempt to make sense out of a complex and under-researched – at least in terms of availability to the lay reader - subject.

I would particularly welcome specialists in the field to join in with corrections and other insights.

1) Symptoms/Diagnosis

My first symptom crept up about five years prior to the diagnosis: My outside toes very gradually were becoming numb to the touch. I mentioned this to a couple of different physicians during my physical exams over that period, and they were not concerned. Then the numbness slowly became more pronounced and spread across all my toes. By the end, I would try to entertain my wife by making a fist, splaying my toes out, and pounding them into the ground, hammer-like. She wasn’t amused…

Starting about a year before the diagnosis, more symptoms developed, again very gradually. I was having to urinate very frequently, and sometimes couldn’t take a two-mile walk (my exercise routine) without a bathroom break. Bowel movements sometimes also became very urgent. And from there it gets even more personal; suffice to say, if you’re dying for details, you’ll have to email me.

I also had some episodes where, out of the blue, I would become very lightheaded and feel a pressing sensation down each arm, lasting about a minute, leaving me feeling weak and panicked (the latter because I thought I might be having a heart attack). I can’t say for sure that these were related to my tumor, particularly since involvement of the arms would usually point to a higher location in the spine, but they have ceased since the operation. Around the same time, I began having intense low back pain in the middle of the night. I would wake up feeling a stabbing pain, but all I had to do to ease it was to walk around for a few minutes. I began taking Advil every night before bed to help me sleep through.

At my next physical exam, hearing of the latter two symptoms, my physician referred me for a variety of tests. First I had a chest x-ray (negative), then an ultrasound (looking for an aneurism; negative), then I met with a heart specialist (all tests negative). Next, in January, 2005, I was referred for an MRI.

At that point, I made a big mistake. For years I had suffered problems with my neck: herniated discs were causing me a lot of pain and stiffness. I’d had a couple of cervical MRIs, five years apart, each with the same outcome: surgeons advising me that I should live with the pain unless it was completely unbearable, because surgery was a last resort that was best avoided if possible. With that in mind, I didn’t want to spend $2,000 for a low back MRI that I expected would tell me the same thing. The pain had subsided somewhat, I had concluded that my problems were from a new, lower herniated disc (which had been my primary suspicion all along), and I decided I would skip the MRI and live with the symptoms unless I couldn’t stand it anymore. Seemed sensible at the time…

But by July the nighttime pain had returned with a vengeance, and I went ahead with the MRI in early August. By sheer coincidence, the attending diagnostic radiologist the night of my MRI was a friend, and he pulled me aside afterwards to give me a heads-up on what he saw: A large tumor inside my spinal cord; probably an ependymoma, possibly an astrocytoma. He copied some relevant pages from a medical book, and I used them as a starting point for my research, grateful to have a head start on the process.

2) Choosing a Neurosurgeon

Several days later, I met with a surgeon who is part of my HMO’s well-respected neurosurgical team. From my reading to date I knew that I wanted the tumor to be an ependymoma – NOT an astrocytoma, which carries a relatively discouraging prognosis. Looking at my MRI, the neurosurgeon told me that it was “almost certainly” an ependymoma. That was particularly reassuring because the MRI itself indicated “inhomogeneous enhancement,” which normally tilts the diagnosis toward astrocytoma. Apparently it was the actual shape and location of the tumor that indicated ependymoma.

He conducted some minor tests to check out any neural deficits that might have already been created by the tumor, testing my ability to feel a safety pin touching various parts of my leg. He also checked my reflexes and gait, and found me to be in very good shape, with minimal existing symptoms: just some missing sensation and a little spasticity in my left leg.

Those favorable findings were significant, because there seems to be a consensus among articles I’ve read that the single biggest predictor of a patient’s post-surgery recovery is his/her pre-surgery status. These articles say that function lost prior to surgery is rarely regained, though there can be some minor improvement in strength. Other predictors were not on my side; they include location of the tumor (better cervical than thoracic) and ratio of the tumor mass to spinal cord thickness (the tumor may grow large enough to compact the spinal cord from within, as mine had). More on this later.

The neurosurgeon was confident that he could successfully remove the tumor, but he was leaving town and would be unavailable for almost two months. He felt that there would be no harm in waiting (unlike most neurosurgeons he believes that ependymomas are so slow-growing that they’re actually present from birth), but suggested that if I wanted the surgery sooner, I could meet with his partner, another very well-respected member of the HMO team.

I didn’t see any advantage to waiting, so I scheduled a meeting with the second neurosurgeon. In between, I continued to read as much material as I could find, and I was able to ask the second neurosurgeon some very specific questions about his approach.

I found him to have a conservative surgical philosophy, inclined to err on the side of leaving residual tumor rather than risking surgical damage to the spinal cord. This is, of course, an entirely reasonable and responsible position, but it wasn’t what I wanted. The risk of recurrence is much higher if a tumor isn’t fully resected. And a tumor recurrence is much harder to treat than the first occurrence, with scar tissue clouding the delineation between tumor and spinal cord. I felt I would rather risk living with a new deficit than raise the odds of a recurrence, with its consequent repeat surgery, radiation, and worsened prognosis.

I was also very concerned by his comment that if he discovered that tumor to be an astrocytoma (which he, too, considered a 20% possibility), he would simply close me back up rather than attempt to remove it. Astrocytomas, which integrate themselves into the spinal cord itself rather than just pressing against it as ependymomas do, are more difficult and risky to resect. However, the most current articles I had read recommended treating astrocytomas as aggressively as possible.

When I expressed my concerns to him, he said that knowing my preferences, he would act more aggressively, but always erring on the side of safety. Again, while this is entirely reasonable, it didn’t instill confidence that he was the right surgeon for me.

I asked if he had access to the most state-of-the-art equipment for the surgery; I wanted assurance that I wasn’t compromising myself by staying within the HMO. He mentioned that the only relevant equipment I might find at a different hospital was motor-evoked potential (MEP) monitoring technology, which he didn’t consider to be significant. We set the surgery date for two weeks later, and I began reading as much as I could on MEP monitoring.

MEP monitoring technology is a relatively recent addition to the spinal surgery arsenal, having been in use for about 15 years, gradually becoming a more common surgical aid. Surgeons who use it generally do so in conjunction with sensory-evoked potential (SEP) monitoring. While the details are far beyond me, my lay understanding is that the former monitors motor impulses from the brain down through the spinal cord, whereas the latter triggers and monitors sensory stimuli from the feet or ankles upward. In both cases, a monitor technician scans a read-out during the surgery, making sure the signal intensity doesn’t drop below a certain threshold. If/when it does, it is an indication that the surgeon is in danger of causing damage to the nerves (in the worst case, paralysis). Sometimes the signals give the warning too late, and the damage has already been done. But in many instances the surgeon is able to try a different approach, or give the nerves some “rest time” before probing further.

I found 12 different articles on MEP monitoring, almost all written by practicing neurosurgeons and neurosurgical teams. Eleven of them recommended it as an important surgical aid, more effective alone than SEP monitoring alone, and ideally used in tandem with SEP monitoring. The other one was simply neutral. My neurosurgeon was planning on using only SEP monitoring, and that didn’t sound good to me. When I emailed him about it, he replied that the MEP technology was unproven, and wasn’t considered a “surgical standard” (which would constitute grounds for referring me to a hospital that had the technology in place). This did nothing to make me feel better. How could a technology be “proven,” when its only effect was to prevent errors? With such a small universe of ependymoma surgeries (250 per year in the U.S., according to one article), when would a controlled study ever be able to take place? And, in lieu of that, wouldn’t the hands-on experience of neurosurgeons who regularly use the technology be the best indicator of whether or not it is helpful?

I decided I should get an opinion from a neurosurgeon outside my HMO. But I found it impossible to get an appointment prior to my surgery date, which was less than two weeks away. Through sheer good luck, it turned out that a friend of mine had worked professionally with a doctor considered by many to be the area’s top brain and spine neurosurgeon. She sent him an email on my behalf, and he took a personal interest in me because of my vocation (I’m a jazz pianist). I met with him two days later.

He concurred with the diagnosis (80% chance ependymoma, 20% chance astrocytoma), and spoke highly of the surgeon I’d been assigned. But from talking with him I could tell he was clearly more aggressive in his surgical approach (even with astrocytomas) than my surgeon, and he also performed this particular surgery far more often, perhaps more than anyone else in the region. His prognosis was more optimistic (predicting I’d end up at least as well off as before the surgery, and probably better), and I connected much better with him personally. He used MEP monitoring (along with SEP monitoring) as a regular practice, and vouched for its value in surgery.

On the basis of the more aggressive approach and use of MEP monitoring – both of which were supported by strong majorities of neurosurgeons in the articles I’d read – I asked my HMO to refer me to the third neurosurgeon. There was some nerve-wracking back-and-forth as the original surgery date approached, but eventually the referral came through. Undoubtedly, there were all kinds of political and personal dimensions to this episode, but I can only speculate. Was the original surgeon under pressure NOT to refer me? (Instead of covering the surgery in-house, my HMO had to pay a lot of money to the hospital where it took place). Were there professional relationships to consider? (The referring surgeon told me I had created stress between him and the surgeon I was referred to; the latter said they are good professional acquaintances, and it hadn’t been a problem. For my part, I had raised all my questions as respectfully and diplomatically as possible).

In a perfect world, the referral would have been quick and painless for all concerned. Despite the uncertainties about MEP monitoring, the mere fact that it would likely help, and couldn’t hurt, would constitute grounds for referral, particularly in light of the seriousness of the procedure and its potentially life-altering complications. One thing is certain: Even at the top of the medical profession, doctors are people, HMOs are businesses, and their various interrelationships can’t be overlooked.

Meanwhile, I had undergone SEP baseline testing (to establish my normal levels as a frame of reference during the surgery), and it hadn’t gone well. My ankle clenched so badly that they weren’t able to get readings through the spasms (which I much later found out were probably a symptom of the tumor), so I had to repeat the testing after taking Valium. Then the technician found a delay in the signal, which she said could turn out to be problematic in surgery.

My new neurosurgeon scheduled me for surgery a week-and-a-half later. I mentioned to him that in the two weeks since the original diagnosis, my symptoms seemed to be escalating. I was fully aware that I was probably scrutinizing myself more closely, and noticing relevant symptoms that I might have missed before, but even in light of that there seemed to be a real progression. My left knee was buckling sometimes, my legs got more fatigued after walks (though I was still able to walk two miles), and my ankles felt stiff. While the other two neurosurgeons had been skeptical about the idea of rapid symptom progression, my new neurosurgeon said that – despite the slow-growing nature of ependymomas – my tumor might have reached a critical mass after which the onset of symptoms would take place quickly. He prescribed steroids to reduce the swelling over the remaining days.

During the week prior to the surgery, I had various tests and meetings, stopped taking unrelated medications, and filled out a form acknowledging the risks I was voluntarily taking. Heading the list: possible permanent loss of bowel and bladder function, and possible paralysis.

3) Surgery/hospital stay

Early in the morning on the scheduled date, I reported for surgery, which was expected to take around four hours. As I was being prepped, the surgeon pulled my wife aside and let her know that I would probably have to spend a couple of weeks in rehab once I was released from the hospital. The location of my tumor meant that he would need to cut through the dorsal column, which would pretty much eliminate most sensation below my waist, so I would need to learn to walk again virtually from scratch.

Needless to say, I don’t remember anything from the surgery itself. As I went under, I was trying to chant “ependymoma, ependymoma, ependymoma,” not as a mantra but as a final vote against an astrocytoma. When I came to, I immediately asked my wife the two big questions: “Was it an ependymoma?” (yes) “Am I paralyzed?” (no). Good news all around.

I learned that the surgery had been more challenging and risky than anyone had expected. The tumor was so large that it had compressed the surrounding spinal cord to the thickness of a piece of paper. As a result, removing it - without damaging the spinal cord itself – became extremely difficult. The procedure had gone on for six hours and – according to the neurosurgeon – “taken ten years” off his life. Most significantly, the SEP monitoring had failed; apparently the tumor’s encroachment had rendered that form of monitoring useless. Only the (controversial) MEP monitoring had worked, and its signals twice dropped to levels that forced my surgeon to halt the procedure.

I honestly believe that had I not made the case for my referral, based on the importance of MEP monitoring, I’d probably still be carrying around a chunk of tumor (likely to recur) or have suffered neurological damage during the surgery. Instead, for the most part, all seems to have gone well. Lesson: When the stakes are high, do your research, and take charge of your own care.

Although I feel that I did all I could on my own behalf once I was diagnosed, my one regret is that I had postponed the January MRI. Given how large the tumor was, how challenging it was to remove, and some concerns that have come up in my recovery process (below) I’m wondering if the results would have been even better if I’d had the surgery six months earlier. My surgeon’s theory about the tumor reaching critical mass and provoking a sudden rush of symptoms seems to have been validated. He later told me that if I’d waited a few more weeks for surgery I might have already been in a wheelchair.

I was in the hospital for a week, and although I’m told I was lucid, I remember it through a narcotic haze. As promised, I had virtually no feeling below the waist, and couldn’t move myself around the bed at all, even on my back. When my surgeon checked up on me, he was very pleased by my strength (which apparently is the most critical post-surgery function), and not at all disturbed by my lack of sensation. In addition to being numb, I had lost virtually all of my proprioception, which is the body’s awareness – independent of touch - of each of its parts’ location; its sense of position. I couldn’t tell where my legs lay in the hospital bed without looking, or which way my toes were bent when they were tested. This would contribute greatly to the challenge of walking again, and would return only very gradually, along with the sensation.

Part of the surgical procedure is a laminectomy, which involves removing a section of the spine to gain access to the spinal cord. The bone is cut in two places and literally removed for the duration of the surgery, then put back in place. The size of the piece removed mirrors the length of the tumor, and larger blocks may require permanent reinforcements inserted into the spine itself. I was fortunate in that regard, having a tumor that spanned fewer than three segments. Laminectomies are serious in themselves, even when comprising the primary part of a surgery (e.g., treating a herniated disc). I am very fortunate, undoubtedly due to the handiwork of my surgeon, that the laminectomy has caused me only minor pain and no complications to date.

The worst aspect of my hospital stay was the bladder/bowel component. While my pain threshold is pretty high, the catheter just killed me, and it was always there. Anytime the nurses shifted me in the bed, I would get a searing reminder. And while I’m sure they had good reason, the nurses’ obsession with bowel movements hit me somewhere between tragedy and comedy. The bowel program was its own self-contained, self-perpetuating world: Narcotics that make patients constipated, stool softeners to loosen them up, anti-constipation pills, and – all else failing – suppositories and enemas. Add the nightly wake-ups to check my vital signs, and you’ll understand why I was soon aching to leave.

A couple of days before my hospital stay ended, a very chipper occupational therapist (picture a young Katy Couric in uniform) and a physical therapist visited me from the hospital’s rehab wing. Their goal was to get me up on my feet. Step One was for me to swing my legs over the side of the bed and sit up for the first time. That alone left me dizzy and sweating heavily. From there they helped me to a standing position, most of my weight supported by a walker. I closed my eyes to stop from vomiting; when I opened them, Katy Couric’s smiling face was inches from mine. “You look great!!!”she said, even as I sagged back to the bed, feeling perhaps more wretched than at any other time in my life. There were witnesses. The hospital stay in five words: Prepare to lose your dignity.

4) Inpatient Rehab

Next I was transported to an inpatient rehab clinic at a separate institution, where I would spend the following two-and-a-half weeks. I pretty quickly weaned myself of the narcotics, broke the cursed bowel cycle, and managed to lose the catheter. Life got much better, and it was actually a fairly relaxing period. It also helped that I had tremendous support from my family throughout my rehab stay, just as I had in the hospital.

It’s worth mentioning that doctors, residents, therapists, and nurses in both the hospital and the rehab clinic were less optimistic about my recovery than my neurosurgeon. Prior to the surgery, my neurosurgeon had virtually assured me that I’d be good as new, and even after the surgery proved more challenging than he’d expected, he continued to predict a full recovery. The others were more cautious, not wanting to get my hopes up for what they saw as an uncertain future. I asked my neurosurgeon why his outlook for me was so much rosier than theirs. “It’s because they don’t see the recovery curve of these tumors from beginning to end, and I do.” He had a point: I was thrown in with victims of serious accidents with resultant major spine trauma, whereas my operation was controlled, with a more predictable outcome. Spinal tumors are so rare that they are not part of most rehab workers’ experience base. In their frame of reference, accident victims and tumor patients alike progress to the point of discharge, but beyond that, further recovery would be unknown.

So I continued to believe my neurosurgeon, and this put me in an unusual position within the rehab program. Much of what the therapists showed us – particularly on the occupational therapy side – was intended to help us deal with disability in day-to-day situations. And many of the patients were coping with the realization that their lives might never again be the same. I was actually somewhat buoyed by the success of my surgery, optimistic about my prognosis, and eager to get on with my life.

In spite of that, progress was slow. Everyone including my neurosurgeon repeatedly reminded me that recovery could take up to a year. It simply takes that long for nerves to regenerate, whether severed during the surgery or impacted by the tumor. Consequently, sensation below the waist returns only gradually, as does proprioception. Lacking those two forms of feedback, learning to walk was a major challenge. Rehab consisted of one to two hours each of occupational therapy (day-to-day strategies) and physical therapy (exercises related to balance, strength and – ultimately – walking) plus plenty of bed rest.

My first assignment was learning to transfer myself from my bed to a wheelchair (sounds simple, but trust me…). Then, when I was finally able to get up on my feet, I worked on using a walker. From there I made it to forearm crutches before I was discharged, taking a walker and set of crutches home with me. The therapists were thrilled with my progress, though I found it disturbing that my left leg lagged so far behind my right. It was in keeping with my surgeon’s prediction (the functions most affected prior to surgery take longest to recover), but even today it remains a source of concern.

Once I got home, I was self-sufficient enough to stay alone during the day. My wife had set up the house so that I could travel from room to room safely on crutches and reach everything I needed. We bought lots of take-out food, which I was able to microwave and serve myself using the walker with a basket on it for transport. My wife also set up a tub transfer bench in the shower, which I continue to use today.

I was visited at home twice a week by a physical therapist, who helped me graduate from crutches to a cane. She got me started on an exercise regimen that evolved as my function improved. After a couple of weeks, I was able to drive myself to a nearby rehab facility, where I continued with weekly appointments. Two weeks ago (three-and-a-half months after the surgery), I was able to meet my most recent therapist’s goal of being able to walk without a cane in public (it’s much easier in a familiar house, with walls to bounce off). My gait isn’t pretty, but I’m happy to be in the final stage of the recovery process. We’ve now reduced the schedule to one meeting per month, and I continue to do the exercises she gave me (now primarily stretches) daily.

5) Real Life/Prognosis

My goal from the beginning was to play my first gig one month after the surgery, and I was able to do so. It wasn’t pretty - moving around the club I leaned heavily on the forearm crutches and had to be helped on and off the stage - but it helped me get back into the normal pattern of my life. I am fortunate that my left leg, which has turned out to be my biggest problem, is the one limb I don’t need to use in playing piano. My reduced sensation and proprioception in my right foot and leg make pedaling a bit of a issue, but it’s not enough to really affect a gig; I just have to keep my eye on my foot to make sure it’s sitting where I need it. I’m able to drive an automatic, and we’ve shuffled around the family cars to make that possible (I used to drive a stick, but I quickly found that to be a bad idea, given my left leg’s reluctance to get with the program).

As I’ve come to understand it, there are several factors that play into the recovery process. Any neurological deficits in place prior to the surgery are likely to get worse before they get better, and as my neurosurgeon explained to me, they are the last things that will actually heal. On top of that, the complications from the surgery itself – numbness and proprioception as an inevitable consequence of severing the dorsal columns, plus any incidental damage to the spinal cord – also have to heal. As I mentioned earlier, all of these problems can take up to a full year to mend to their final level, and according to the various sources I’ve read, recovery typically doesn’t even begin until the third or fourth month.

Today, four months after the surgery, I’m living my life pretty much as it had been prior to the surgery, though I still have much recovery ahead, and I hardly go a minute without thinking about my status and prognosis. My biggest issue, which no one had predicted, is spasticity (aka “tone”) in my hips, knees, ankles, and toes. I’m experiencing it far more in my left (bad) leg than in my right. Essentially, the muscles are flexing when I don’t want them to, causing my legs to feel stiff and heavy, my toes to curl a little, and my knees and ankles to feel stiff and sometimes painful.

Strangely, this problem has been playing out on a strictly every-other-day pattern: Good days (relatively little spasticity) always alternate with bad ones (serious ankle pain, major stiffness from the knees down). On the good days, I feel a little weaker (since the spasticity actually helps my legs to bear my weight better, albeit clumsily), but I much prefer that weakness to the awkwardness and pain of the bad days. Most troubling to me is the fact that this problem has not improved at all, and may still be getting worse. In fact, it didn’t really kick in hard until around the third month, though it’s possible I was simply unaware of it prior to that because of my lack of sensation. It doesn’t seem to be related to the amount of stress I put on the legs via walking.

I have read about spasticity as a symptom of spinal cord trauma, but not as a post-op complication. My surgeon assures me that it will go away, though a rehab doctor I met with was less certain. For now, I’m doing lots of stretches, as my surgeon and physical therapist recommend, and hoping I won’t be living with it forever.

Other than that, everything is getting better. My left knee, which used to buckle a lot, has strengthened, and my right leg can go forever. The main impediments to my walking are the spasticity and the fact that feeling in my feet has been returning patchily, so I don’t sense their full contact with the ground, especially when I walk without shoes. But sensation continues to come back, particularly in my feet, ankles, and the backs of my legs. I can go up and down stairs one at a time (good leg leading up, weak one leading down), and I can handle about 1/2 mile of walking over the course of a day. Doesn’t sound like much, but considering I’m just four months into the year-long recovery process, it feels like I’m doing well. My surgeon and therapists are all impressed with the progress, and I’m happy to take their word.

While the spasticity has got my immediate attention, my biggest concern, by far, is the possibility of a recurrence. I’m trying not to dwell on it. Both the MRI taken immediately after my surgery and my three-month follow-up MRI are clean, with no evidence of residual tumor (thus my surgery is considered a “gross total resection”). According to my surgeon and the various articles I’ve read, this puts my chances of a recurrence at just 10% - 20%; not bad odds at all. But the recurrence itself would be a daunting development. As I mentioned earlier, the scar tissue from the first surgery makes it hard for the surgeon to find a delineation between the tumor and spinal cord, which in turn makes it very difficult to get a total resection the second time around. Additionally, according to a radiation oncologist I met with, a tumor that recurs has “declared itself to be more aggressive” than the original, with an increased likelihood of growing faster and/or spreading. For that reason, radiation is almost invariably used in conjunction with the second surgery, and that carries risks of its own.

6) Radiation

I’ve found that radiation oncologists and neurosurgeons will look at the same situation from very different perspectives, directly related to their craft. Although my surgeon and his team viewed my immediate post-op MRI as clean, the radiation oncologist was less convinced (from what I understand, the post-op MRI inevitably contains blood and stray tissue that cloud the picture, leaving it open to interpretation). For that reason, my case was brought before the tumor board as a possible candidate for radiation. Ultimately, the radiation oncologist took my surgeon’s word that, even through the operating microscope, he saw no residual tumor by the end of the surgery.

The same radiation oncologist (a well-respected doctor at a good hospital) requested that I meet with him shortly after the surgery so he could present my options. I couldn’t understand why we were even meeting, because every article I’d read recommended against radiation in the event of a gross total resection, and the jury seemed to be split even in the case of partial resections. Spinal ependymomas are considered somewhat resistant to radiation treatment, and the spinal cord is susceptible to radiation damage. The radiation oncologist explained that he was actually recommending a watch-and-wait approach, but that he wanted me to know my options because some people in my shoes might choose radiation to be safe against the possibility of the tumor spreading, and to further reduce the odds of recurrence.

This sounded reasonable, but hardly appealing: the radiation used was based on a standard he described (if I remember correctly) as 5/5: It would carry a 5% chance of producing paralysis within five years, with the odds going up beyond that period. That, to me, sounded no better than the 10% - 20% chance of a tumor recurrence over my lifetime, particularly considering that even if I did undergo radiation, there was no guarantee that the tumor wouldn’t recur. And I hadn’t read of a single incident where an ependymoma in the thoracic area (as opposed to lower down the spinal cord) had metastasized. As a friend of mine put it, “consider the hammer they’re holding.” A radiation oncologist is more inclined to believe in radiation as a cure; a neurosurgeon is more likely to believe in surgery. Even as I acknowledge that most of the articles I’ve read are by neurosurgeons, I’m choosing to believe that point of view.

At my three-month follow-up, my neurosurgeon, in presenting me with the 10% - 20% probability of a recurrence, added, “But that’s long-term; ten, twenty years or more.” He continued, “This is considered a malignant tumor by a lot of people, but we believe we can cure it.” Again, the idea that some doctors – but not others - consider a spinal ependymoma malignant seems to be a matter of perspective: All the articles I had read described it as a slow-growing, benign tumor, with an infrequent tendency to recur. But these articles were written by neurosurgeons. Perhaps neurosurgeons consider it benign because they feel that if they truly get every microscopic bit, they can cure it; it’s understandable that a surgeon would embrace that as a goal. And perhaps a radiation oncologist, who is equipped to tackle malignancies, sees the ependymoma as always ready to grow back, and thus a suitable candidate for radiation even following surgery that is declared a gross total resection. Or maybe I just think too much…

7) Pain

One final note: If you’re about to undergo the surgery, no doubt you are interested in how painful the process is. I can only speak from my own experience, and here’s how it played out…

Prior to the surgery, my only pain was the nightly searing low back wake-up call. Other than that, my symptoms were principally numbness and weakness.

Immediately following the surgery in the hospital, I was heavily medicated (morphine at first, which gave me some bad reactions; other narcotics over time). I remember some minor back pain, but mainly – strange as it sounds – I took the medicine to help me deal with the pain of the catheter and the bowel program. Once I got rid of the catheter (my first few days in rehab), I was able to wean myself from the narcotics, which in turn allowed me to go without the bowel program. From then on, I was able to get by on strong doses of conventional painkillers like Ibuprofen and Acetaminophen. The primary pain at that point was in my back, which was sore but not at all unbearable.

When I got home I immediately switched to over-the-counter medication: a couple of Advil tablets every eight hours, and extra-strength Tylenol overnight. That continues to be my regimen to date, but my pain has actually gotten worse rather than better over time. Beginning around the third month after surgery, the stiffness in my knees and pain in my ankles from spasticity became a constant source of discomfort; it has yet to improve. My back remains a little sore from time to time, but considering how much time I spend seated (at the piano and computer), the laminectomy has been surprisingly easy on me. I consider that a tribute to my neurosurgeon’s good work, as was his complete removal of a very difficult tumor.

--Bill Anschell, January 2006

If you click on the "comments" link below, you'll find additional information, including detailed updates on my recovery written seven months, one year, and two (+) years after surgery.