Wednesday, January 18, 2017

Using Legal Cannabis to Control Schwannoma Nerve Pain, One Patient's Perspective

Hello everyone! In this article we are featuring a short letter from a friend of the Schwannoma Survivors & Schwannoma Fighters page named Nirit Avnimelech. She lives in Israel and uses legal Cannabis to control Schwannoma related nerve pain. Nirit was kind enough to detail some thoughts how Cannabis has helped her regain her life after dealing with a Schwannoma - and we appreciate her taking the time to do so. - Neil

*Notice: the Schwannoma Survivors & Schwannoma Fighters page wishes for everyone to make certain, before they consider the medical use of Cannabis to control Schwannoma related nerve pain, that they are fully aware of the laws regarding Cannabis usage, and that you follow the laws according to the place where you live. (In the United States, medical Cannabis / Marijuana laws may vary from state to state, so checking is extremely important to be sure you never violate the law.) For ourselves at the SS and SF page, we take no position on medical Cannabis other than what may be supported or suggested by one's own doctor. However we feel that a perspective is useful, and we want people to have a full slate of information when deciding upon a primary means of pain relief.
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Nirit writes:

Hi Neil, I'll be glad to write about my experience with cannabis.  

I'm from Tel-Aviv, and I get *subsidized* legal medical cannabis. My schwannoma was C.E. (L3-L4), and post-op I was on a cocktail of painkillers, which I really hated, and which many of your readers probably know well (even though the brand names may differ). Tramadex,(Tramadol) Targine (Similar to Oxycodone). They were effective regarding the pain and paresthesias, but I was drowsy, dry, had blurred vision, and, in general, couldn't get on with my life.  

I started taking cannabis after I got off most of them. My cannabis dose is about 0.1 gr (It's really a tiny bit), and I inhale it only when needed, as opposed to oral medicine that has to be in your system 24/7. I'm getting a low-THC, high cannabinoid variety, so I'm never high. Side effects are minimal (Very different from person to person - for me my heart rate is elevated for the first half hour), but it takes 3 minutes and I'm perfect. An additional benefit is that I can really monitor my leg - I know when it's worse or better, and can now study what is good for me (walking) or bad (standing for a long time), which you can't do when you're on painkillers all the time. Plus, as I get better (lot's of physical therapy) I can decrease the dose. I now take it maybe 2-3 times a week, before I go to sleep. That's it.  

And the best thing is that it's out of my system by the time I wake up (I can sleep!!!!), so I get up in the morning, work full time, drive, go out, have fun, and live a normal life. Not semi-normal. Normal. To the point that I'm totally off disability, and think of my medical condition only once every 3 months, when I have my follow-up MRIs. And - one more thing I need to mention - I'm not the type that uses drugs or alcohol. I'm a middle aged women, a very boring statistician, so really - I'm not advocating drug usage here. This is medicine, and it's the best medicine for me. I don't even want to imagine what my life would look like if it weren't for medical cannabis...

Thursday, January 5, 2017

A Doctor Who Had a Schwannoma Tells His Story

Hello everyone!  And we wish you a happy and healthy 2017!

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.