Today we have the unique privilege of featuring our first ever narrative written by a doctor who had a Schwannoma.
Dr William Taylor is an highly experienced pain management specialist who practices in North Carolina. He was kind enough to share his story, from the perspective of both being a patient, and a trained MD. We sincerely thank Dr Taylor for his contributions in helping Schwannomas be better understood - and we trust you will find his story and perspective an interesting read! - Neil
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Dr Taylor writes:
I had the schwannoma at the so-called cauda equina, where the nerves to the legs leave the bottom end of the spinal cord, at the T12-L1. Intradural and extramedullary.
It began with foot pain, especially standing barefoot on hard surfaces. More specifically the ball of the foot where the toes attach to the rest of the foot bones. Shortly afterward I began having decreased sensation from the midfoot out to the toes, followed by cold sensitivity and very uncomfortable paresthesias (pins and needles sensations). My internist referred me to a podiatrist and a neurologist. The podiatrist took x-rays (normal) and injected steroids into my toe joints without much relief.
After 5 or 6 months I saw the neurologist, whose exam confirmed the sensory deficit. He and I both thought this was similar to diabetic nerve damage, although I am not diabetic. Ho sent off an extensive set of blood tests looking for correctible causes of nerve damage such as B12 deficiency, syphilis, HIV, and autoimmune disorders, all of which were negative. When he did my nerve conduction velocity and electromyogram, which confirmed the nerve damage, he said I had idiopathic (unknown cause) peripheral neuropathy, although one test was still undone.
That one test was a lumbar spine MRI, done because rarely people with narrowing of the spinal canal or disc disease can have somewhat similar symptoms. The afternoon after the MRI, the neurologist's office called to say I had a tumor at the base of my spinal cord and to refer me to a neurosurgeon.
Imagining the worst, I reviewed a copy of the MRI report, which described an intradural, extramedullary mass, most likely a myxopapillary ependymoma or, less likely, a schwannoma. I remembered that these were rare benign tumors that arise from the cells that form the sheath around nerves. A few minutes on the internet found typical MRI images, and youtube had a video of the surgical removal of one of these tumors from the spinal column.
There were lengthy delays scheduling the neurosurgery visit and then scheduling surgery, but I went under the knife November 2013. Afterwards they told me that the tumor was a schwannoma.
I asked the neurosurgeon whether the nerve damage was entirely from mechanical nerve compression or whether there were other toxic effects from the tumor. He thought it was entirely mechanical compression, although I remain skeptical.
Three years out, the paresthesias have mostly gone, but the sensory loss, cold sensitivity and pain with pressure remain. Pressing the gas pedal with my foot is painful, so you can imagine what walking is like. I wear sandals and socks at work, Teva mush flip flops or fleece lined slippers at home. In addition, I have back pain at the laminectomy site on standing, but I can ride a bicycle a few miles if I pedal with my heels or foot arch.
My pain does ok with round the clock Tylenol and gabapentin 300 mg twice daily, with a rare oxycodone for bad days.
Comments:
1. All doctors encounter patients with horrible diseases during their training and practice. Even though my condition limits me, I consider myself lucky that I have been spared something much worse, so far. At 69, I'm living on borrowed time anyway.
2. 21st century medicine, for all its faults, is a miracle of humanity. I'm particularly grateful to my neurologist for ordering the MRI, and for imaging technology that makes diagnosis easy and painless.
3. Patients have a wealth of information accessible online; it's vitally important to know as much as possible about your condition, and much easier than it used to be.
4. Rare diseases are, in the aggregate, not so uncommon. Every few days in practice there will be someone I see with a condition that I only read about in medical school. Often, they had a long road to finding a diagnosis.
5. After my misadventure, I read an article about peripheral neuropathy which said that MRI imaging is generally not cost-effective. The medical high priests who write articles like this are not accounting for the immense suffering that happens when diagnoses do not get made.
6. My foot pain is still enigmatic. Is it directly from nerve damage, or is it from loss of muscle and muscular padding.
7. I would have surgery again, even though the results were less than complete recovery
Pain Management:
I don't know anything about Schwannomas in general except what is widely available. But I practice in medical pain management and can review a few ideas:
1. Gabapentin (Neurontin) and Lyrica are widely used for pain that arises from nerve damage,, especially for diabetic neuropathy. Gabapentin is the older generic and Lyrica is the fancy brand-name product. Because schwannomas are so often associated with peripheral nerves, a serious trial of one or both of these is in order for anyone with a Schwannoma who is having difficulty with pain.
2. Opiates: The government is cracking down on doctors who prescribe opiates for people with chronic pain, but they are all we have for severe pain, and people with schwannoma may need to be maintained on long-term opiates if they have incapacitating pain. These drugs are addictive and widely abused, so patients and doctors need to be very careful. Commonly used ones are oxycodone, oxycontin, morphine, and methadone.
3. Suboxone (buprenorphine) This is only approved for addiction treatment, but it is very helpful for many patients with chronic pain and can be prescribed for this reason. It is an opiate but seems to be much less addicting than regular opiates. I saw one reference which said it was particularly helpful for nerve pain of the kind that would be expected with Schwannoma. There are only a few places in the country where it is used for pain management, but my practice has had good results. I would try this if my schwannoma pain were worse.
Best wishes to anyone dealing with this challenging condition.
William F. Taylor, MD
( Web address for Dr Taylor's practice)
Disclaimer: Dr. Taylor and Pain Management Services assume no liability whatsoever for the comments or advice offered in the content of this blog. Dr. Taylor has offered his advice generally on the issues relating to treatment of Schwannomas - however Dr Taylor and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.
