My Story: Deal with the Devil

My Story: Deal with the Devil

Fourteen patient deaths have been associated with problems involving Medtronic’s SynchroMed implantable pain pump. Most of the deaths were caused by a refill error in which the medication was inadvertently injected into tissue around the implanted pump, rather than into the reservoir of the pump.

Class-I-recall-issued-on-Medtronic-SynchroMed-drug-infusion-pumpsDespite the deaths, scary YouTube videos, and chat room prattle, I had one of these pumps implanted into my backside last April.

I’ve had people ask me why I would roll the dice with my mortality. Honestly, I didn’t give it a second thought.

When I tell people that I have had constant pain for almost 8 years, the typical reaction is, “I don’t know how you do it!”

Like childbirth, unless you’ve done it, you really don’t have a clue.

Putting a potentially lethal pump into your body seems a bit insane. If I think too hard about it, it feels insane. But the truth is, if you told me pulling out all of my nose hairs, one by one, would end this sentence of pain, I would be looking for a tweezers.

The level of frustration and desperation that I push to the back of my mind each day is impossible to quantify. So when a doctor tells you that they have a tool that might help, you leap.

Part of my decision to implant the pump was strategic: I am trying to dump the numerous medications, including opioids, which I take every day.

I am terrified that I will soon lose my access to oral pain medications. The news is full of stories about patients becoming dependent or even addicted to their pain meds. These stories always make it so simple: opioids are bad, do not take or prescribe them. The part they never discuss is what people with chronic pain are supposed to do instead.

Suddenly we are not being given the option to use medications that work for us, even if we are willing to deal with their side effects. Instead of getting to know each patient individually, educating them about how to use these medications, and treating them for depression; we are losing the opportunity to use them at all.

From my side of the pain scale, it feels like we are being hung out to dry without recourse.

The pain pump offered me another option. The doctor controls my medication levels, so it is impossible for me to overdose myself. If I never have to stand crying at the pharmacy because my oral pain medication prescription was blocked, again, I will be a much happier woman.

The research bears out my decision: of the 200,000 SynchroMed pain pumps implanted around the world, 94.4% continue to perform to expectation.  I like those odds.

My particular clinic participates in a safety council and has updated their procedures in order to avoid refill emergencies. I have had my pump for 8 months, I was told to expect it to take anywhere from 6-12 months to see sustainable results.

At the very beginning I had wonderful success, the pump was relieving 50% of my pain and I was able to dump half of my oral medications. I was truly a new person. Unfortunately, as they continued to raise my pump medication levels, I started having allergic reactions (itching, sweating, and hives). I’ve been on a back slide for the last 3 months as my doctor tries to find me a safer medication.

It is frustrating and even depressing, but a year ago I had no hope for relief. This year I have seen the possibility of life with less pain. Hope is a powerful thing.

I had my pump refilled last week and I still have to use my yoga breath to block out the fear. I close my eyes; imagine my daughters swinging at the park and bask in the hope. It is a gamble I am willing to take for a life worth living.

Malia Cole

Malia Cole

Malia Cole lives in Minneapolis, Minnesota with her family. She has a blog on motherhood and chronic pain called Labor Pain.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Malia Cole

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Brooke

Thank you, Malia, for sharing so honestly an from the heart. Making the decision to get an implant is a life altering decision but in some cases necessary. I too have SOD but fortunately found relief–for now–through major surgery. Now I struggle with very painful neuropathy from sepsis and fluoroquinolone toxicity (Levaquin poisoning). No doctor in my area of upstate New York will prescribe pain medications that are controlled substances. It is barbaric how we are treated here–like lepers. People in other countries cannot believe how Americans are left to suffer because doctors an hospitals have Opiophobia. The only thing the pain doctors will do for me is load me up on gabapentin (which does nothing but make me act drunk) and push a spinal cord stimulator. So, because I have no other choice or human rights as a patient, I am looking to trial the SCS. I don’t know if I’ll be able to, though, as I have a toddler and wouldn’t be able to lift him for a while if I get it implanted. I can’t tell you how many times I’ve wanted to kill myself over this pain. Doctors don’t understand or care. And, I HAVE spent money we don’t have on acupuncture and a naturopath to no avail.

Hi Robyn,
Thanks for your response and concern. I am so sorry you are dealing with Fibro. I have a rare digestive disease called Sphincter of Oddi. A valve in my Pancrease does not function correctly causing all-day pain. I have tried over 50 medications and treatments so far. Digestive pain is especially hard to target and treat. I am lucky enough to have avoided the addiction gene and am grateful for that every day. I do become tolerant and even chemically dependent on my meds, which is why I was attracted to the low level of medication delivered in a pain pump.

Best of luck to you!

I was reading this story and somehow failed to see what type of pain was she suffering with for 8 years? I have suffered with chronic pain from spinal stenosis Osteoarthritis anklying splondysis Fibromyalgia and the list goes on. I have been living with chronic pain since 2007. I continue to attend a pain clinic and currently am treated with Cymbalta MS contin Hydrocodone and Nor flex as well as other medications for other issues. I keep funding myself having to switch up my meds every so often as my body becomes intolerant to the pain medication after a while as well as the muscle relaxers. I only use the hydrocodone for break through pain. I stay on the Cymbalta constantly for the Fibro pain. I guess my question is how many meds were tried before using the pain pump and did oral pain medication ever help you? I do not worry about getting addicted as Ido not have an addictive personality and only take my medication as prescribed. I do not even take my Hydrocodone for break through pain tunless needed. I enjoyed reading this article but just wanted to see what type of pain you were suffering from.
Thank you

What about paralysis? my pump grew grandulomous tissue at the tip of the cath. That growth then grew onto my nerves at the t-10 level. i no longer have feelings in my legs but after months of P.T. I was able to walk again. mind you the doctors and nurses were certain that I would be in a wheelchair for the rest of my life. it was devine intervention for sure. I have nothing good to say about Medtronic!

Thank you so much for your comments! People like me are always mining for new information. My particular pain is caused by a pancreatic disease called SOD. There is no current cure. Therefore, I work to find ways to control the symptoms in order to continue a quality life. Have been diagnosed for 8 years, I have tried my fair share of holistic approaches. So far, they have been almost completely ineffective, which has been heartbreaking. The other issue is that these treatments are for the rich, I absolutely cannot afford them on the regular basis. Believe it or not, I have a digestive disease and I cannot get my insurance to pay for a nutritionist.
All of this is to say that those of us with chronic pain are constantly having our hand slapped for using the medical treatments available to us, how dare we want a pill to help us live our lives in some comfort? Until holistic opportunities are more financially available, it is not a useful solution.

This lady is still a captive and continuously being tormented by her pain. This is a glimpse into the exceptional progress we have made in science based medicine and the fallacy associated with it. Medicine and healthcare, IMO, it’s a complex marriage between human nature, free will, the free market, free speech (even if it’s not the truth), free health care (we all pay into it but not all fully benefit), a for-profits health care industry, consumerism and raw capitalism. And no one guarding the hen house. 🙁

Here are some issues to consider related to Science and Pain;
Science cannot -yet- answer all of medical questions. Pain that is not of danger ie cancer, usually can not be “fix” with a surgeon’s blade or “cured” with a pill.

Here are some problems related to human communication:
The word “pain” is misunderstood and can means something different and is unique to every human being. Thus every person needs personalized and tailor made care for their pain.

This is the main problem with most long term pain which is poorly understood and actually marginalized:
The body will collect breaks or fractures that do not heal properly and they will generate pain signals. These pain signals are erratic and variable; wax and wane or be miserable. The PSGs can only be felt by the person, they can not be found with technology like a scanned, X-rayed or found in the blood. Because they are overlooked they are easily neglected. The scientific models we have used to perform medical marvels are no good in this case. These PSGs can only be treated with re-injury like a “new injury” from a massage, kneading, stretching, an external heat source ie cold laser or poked with a needle. My only suggestion for this lady is go back to the holistic bases of hands-on therapy, dry needling, Acupuncture and myofascial release with needles as per Travell/Simons.
She will have a long journey.

The most overlooked ally in medicine is in mother nature’s design.-?.
Godspeed.

kenfromca

your welcome to join our group at https://www.facebook.com/groups/423550541024167/

Ty for sharing ur story . Idk what to think, why would they do this to people who really live in pain? I am 44 have a ass. Degree in paramedic was put on SS in 2004 after a 24 hr shift I had 6 back to back ambulance calls, when I went to go up stairs they gave out. Went to ER an I have OA bad in knees. Now all over an a lot of other problems. They took all my meds away . Now I can’t take a shower, can’t stand. A aid comes an cooks. I stay in bed most days. My daughter wants to go dress shopping for PROM an I can’t ! I have no life. I don’t know what to do to ask for help. My husband left, u just would not believe a DR would say u got to live this way IM 44! Was going for RN I use to sub at school! I have 73 credit hrs with a 3,84 grade avg! I hate this I want them to fix me! I want to work not live like this, plz any advice let me know. Ty patty

kenfromca

Thank you for share you story, we with c/p need to learn from others before we make choices