Opioid Induced Hyperalgesia

My Informal Disclaimer: Let me begin by saying I am not a doctor, nor am I trained in any medical profession. I do not pretend to be an expert; I am simply a person who is trying to make sense of her own experience. I am sharing what I learn and experience here because I know how lonely the road from diagnosis to recovery can be, and if I can help even one person, the time I spend writing these words will be worth it. 

One theme that comes up time after time on the SCTA (Spinal Cord Tumor Association) Facebook page is pain management. Since opioid pain medications play a role in pain management, there is a lot of discussion about the proper use and distribution of these medications. While some of the members of the SCTA seem to be able to cope with the pain without opioids, there are others who report taking these medications for months or years without improvements in their pain levels. So, when I heard a report on NPR (National Public Radio) about opioid induced hyperalgesia, my curiosity was aroused.

The author of the report, Clayton Dalton, is a resident physician at Massachusetts General Hospital. In his report, he presents research that suggests long term use of opioids leads to hypersensitivity to pain. Going back to 1870, Dalton cites evidence of the pain magnification that accompanies opioid dependence. What does this mean for spinal cord tumor survivors and others with chronic pain? Well, it seems to be a clear message that the opioid based drugs that appear to be an elixir in the early days following surgery can quickly become a major part of the problem.

“This could be a major factor in the opioid crisis,” Arout says. “People have worsening pain, and so their dose is often increased because they are thought to be tolerant.” But the result is that some patients may find themselves taking dangerously high doses while their pain continues to intensify. – From Clayton Dalton’s NPR report on opioid use.

There is no doubt that spinal cord tumors (and the spinal cord injuries that often result from the surgery to remove them) cause pain. And now, this report suggests that opioids intensify that pain if taken for an extended period of time. Suddenly bells and whistles are going off in my head. This explains so many of the posts that I have read on the SCTA Facebook page. Many of the members of this page experienced pain for years before getting their diagnosis. They might have bounced from one doctor to another searching for answers, and in the interim, the puzzled doctors may have prescribed opioid medications to numb the pain. This would have been okay in the short run, but as the patients migrated from one specialist to another, days turned into weeks, weeks turned into months, and months turned into years – while well meaning doctors prescribed increasing doses of these medications thinking the patient was just developing a tolerance to the pain medication. The patient was, unfortunately, being made more sensitive to the pain they were trying to control.

Now we have large numbers of people whose years of opioid use have, according to the information in this report, lead to hypersensitivity to pain. The pain is not imagined, and they are not weak. They need alternatives to opioids that will cut through the pain and allow them to get on with their lives. What are those alternatives? Some people report that physical therapy can help. Others rely on non-opioid pain medications, massage, meditation, acupuncture, or other non-traditional treatments. For those who live in states that allow the distribution of medical marijuana, that seems to be a promising option. However, once a person has developed hypersensitivity to pain due to prolonged use of opioids, how long does it take to retrain the nerves? Are these alternatives able to stand up against heightened pain? Or are they more helpful for patients who have not experienced long term opioid use? There are so many implications and so many questions that need to be answered because SCT survivors desperately need tools to help them cope with their pain.

Hopefully, researchers are aggressively working to find answers to these questions, so people living with chronic pain can find some relief and get back to the business of enjoying a life lived without pain.

If this topic interests you, here are some articles you might enjoy:

When Opioids Make Pain Worse – National Public Radio

Treating Pain with Fewer Opioids – National Public Radio

Would be interested to hear what you have to say on this topic. I know it is something many SCT survivors have strong opinions about.


Do What You Can’t

I know… it is an advertisement, but I saw it during my first week back at work after my spinal cord tumor surgery, and I have to tell you that it really resonated with me! I was feeling so broken, so fragile, so incapable of facing the challenges that were bombarding me. Then I saw this ad and my eyes filled with tears. Do what you can’t… that is my calling for the next year as I tackle this recovery. DO WHAT YOU CAN’T.


One of the things people repeatedly say about getting a spinal cord tumor diagnosis is that it is hard to find people who “get it”, and I have found that to definitely be the case. So it is always nice to find people who are willing to share their story. Just stumbled across this blog by a fellow SCT warrior, and I thought I would share.


Walk it off…

Being diagnosed with a spinal cord tumor opened me up to an entire world I didn’t know existed before. It probably has a lot to do with google’s algorithms, but suddenly it seems like I am constantly stumbling upon more information about people who have been through surgery to get rid of a spinal cord tumor.

An excellent example is actor Ruth Marshall. You may not recognized her name immediately, but Ruth Marshall is an actor who played a mother to one of the teen characters on the television show Degrassi: The Next Generation. She has also acted in Hollywood films including Casino Jack and Dolores Claiborne.

The reason she is now appearing in this blog is that in 2012, she was diagnosed with a spinal cord tumor. Now that I have had my surgery, I can say her story reminds me how lucky I am (more details about my case coming soon). I heard her interview on the CBC (Canadian Broadcasting Company) radio. You can listen for yourself by clicking this link to What’s it like to re-learn how to run, walk, pee, and have sex? ‘Degrassi’ actor tells her story

I plan to get a copy of her book: Walk it Off

Here is a summary from the publisher:
Ruth Marshall—power mom, wife, actor, and daughter—was in great health, until one day, her feet started to tingle. She visited doctors and specialists for tests, but no one could figure out the cause of her symptoms. Was she imagining those pesky tingles? She tried to brush it off, even as she tripped over curbs and stumbled into people. Clumsiness is charming, right?

But when Ruth suddenly couldn’t feel her legs at all, she knew something was terribly wrong. Her fears were confirmed by an MRI revealing a rare tumour that had been quietly growing on her spine for more than a decade. Within days, surgery was scheduled, and after the intense eight-hour ordeal, Ruth woke up to find her legs and feet had forgotten how to do…well, everything. The question that burned in her mind was, “Will I ever walk again?”

What Ruth thought would be three days in the hospital turned into months of rehabilitation as she relearned not only how to walk, run, pee, and even have sex again, but how to better appreciate everyone around her—including her devoted husband, her two young sons, her worried parents, her sisters, her loving friends, and the caring staff at the rehab center who help her tackle her recovery head-on.

Laugh-out-loud outrageous and searingly honest, this is a memoir that not only entertains but inspires readers to put their best foot forward and walk off anything life throws their way.

I will write a review here after I have finished reading it. If any of you have read it, would love to know what you think about it.

More resources… CERN Foundation

Today I would like to share another resource for everyone out there trying to understand spinal cord tumors – CERN Foundation

I first learned about the CERN Foundation because some of the other folks on the SCTA Facebook page mentioned it. The CERN Foundation focuses on one particular type of spinal tumor – ependymomas. Their site has a wealth of information about these tumors. They provide links to support and resources for people coping with ependymomas. They also help to put people in touch with research centers if they are interested in taking part in clinical trials.




Today I want to share a resource with others out there who are also on this journey: Rewired, a book by Dawn Standera. On Amazon, the book is described as follows:

Adults with spinal cord tumors are exceedingly rare, and written accounts of what it’s like to survive tumor-removal surgery are even more rare. Through this book, Dawn hopes to give those who are on a similar journey the reassurance that they are not alone. She not only offers a glimpse into what their post-surgical experience might be like, she also offers insights on how they might accept their body’s new language with curiosity, humor, gratitude and grace.

I bought this book after receiving my diagnosis and found that reading it helped me to not feel so alone in my diagnosis. Dawn doesn’t sugar coat any aspect of her journey, but she does, somehow, convey her optimism and her determination to not let this beat her!

I highly recommend this book to anyone with a new diagnosis (or caregivers who need some insight into what your partner is experiencing).

If you are more of a video person, you should probably check out her presentation at the following link: https://mediaplayer.mdanderson.org/video-full/F52169CD-878C-4F65-B75B-A2B73DCBA0E1

Questions for your first consultation with the doctor…

Here is a list of questions that I am compiling in preparation for my first consultation with my neurosurgeon.

  • What type of tumor do I have?
  • I’ve been told the tumor is probably benign, do you agree?
  • What is the natural course of my condition if not addressed?
  • What are my treatment options?
  • What are the treatment goals?
  • Do I need additional tests before we can decide on treatment options?
  • Which treatment option do you recommend?
  • Will the treatment eliminate the current symptoms?
  • What are the risks/side effects?
  • What are the pros/cons of beginning treatment sooner rather than waiting?
  • What should I do to prepare for treatment? Can I continue my current exercise routine? Should I add/subtract anything?
  • How long will the treatment/recovery take?
  • How long is the hospital stay?
  • How long will I be out of work?
  • If I need surgery, do you perform the whole procedure? Will students/other surgeons be doing any parts of the operation? If yes, who are they and what are their qualifications? 
  • Who else will assist you in the operation? What are their background and qualifications?
  • How long would I need to stay in Houston?
  • What is the success rate for this treatment?
  • What is the long-term outlook/prognosis for my condition?
  • What type of follow-up will I need after treatment?
  • I am thinking about going for a second opinion. Is there someone there you would recommend?
  • Can I talk to any other patients who have undergone similar treatment?

If I do need surgery:

  • What kind of pain should I expect post-op? And for how long?
  • How long will I be in the hospital?
  • Will I need to have inpatient PT/rehab following the surgery? If yes, for how long?
  • Will I be able to get adequate PT follow up when I get back home?
  • Will I need any special equipment after surgery (i.e. a back brace, a walker)?
  • How often will I need to come to Houston for follow-up care after the surgery?
  • Do you have any previously existing ties with neurosurgeons/neurologists in my area?
  • What will I do (who do I call) if I have problems after I am back home post-surgery?
  • What kind of assistance will I need during the recovery period?
  • When will I be able to drive?
  • If I have surgery to remove the tumor, what is the likelihood that I will develop another one in the future?

Can you think of anything I missed?

Here are some relate links: