My Story: How Ketamine Can Work For Surgical Pain

My Story: How Ketamine Can Work For Surgical Pain

By Ellen Smith.

Ellen Smith lives in Rhode Island with her husband Stu and advocates for medical cannabis. Here’s a recent story on them. She chronicles her recent surgical experience for us. 

Arriving for my 24th surgery, a needed revision of my neck fusion done two years ago, I was thrilled that I had been called to travel from where I live in Rhode Island to New York. for a pre-op appointment the week in advance. Drug and food reactions are very common to those afflicted with my condition, Ehlers-Danlos Syndrome. Therefore, the idea of getting all in order to help see that things go as smoothly and safely as possible seemed like the right decision. I respected both my surgeon and hospital for working to address potentially problematic issues in advance.

Ellen Smith and friend

In my pre-op appointment, I brought up many issues that seemed important for safe care. I had my Genelex Drug sensitivity testing to share, my ALCAT food sensitivity list, and discussed the need for a PICC line which had been clearly demonstrated by the almost complete lack of success with a conventional IV’s during my previous surgeries. I had a list of contacts for all doctors involved in my care, a list of medications, and a list of what had proven effective in the past.  I had my ratings from my pulmonologist of my BiPAP machine, and even paper work of documentation of my service dog, Maggie, to be sure she would be allowed by my side.

After a pleasant two-hour visit, we drove home feeling as ready as we could be for this surgery. Four days later, we arrived back in New York for the surgery. When I was put into the OR for the procedure, it was mentioned to me that the hospital would not be able to give me the ketamine drip needed for pain relief because it was against their policy. This had never been mentioned to me as an issue or even discussed with me. There I was, on a table, about to be put under, knowing that their idea of a solution of just injecting me with ketamine, would not be the answer – but would instead put me in temporary trips out of body to then quickly waking up back in extreme post-surgical pain.

Why wasn’t this addressed with me first? Why would anyone knowingly arrive for a surgery with the knowledge that they would not have the only pain medication which they could metabolize? The DNA testing done about five years previously had confirmed the horror I was living with – a body that truly couldn’t even metabolize the most basic over the counter medications such as aspirin or Tylenol, let alone any of the opiates.  This testing clearly demonstrated that the only medications my system could metabolize for pain relief were ketamine and cannabis. And here I was, lying on an operating table about to undergo very serious surgery with the full knowledge of the horror which awaited me in the recovery phase of my treatment. The fundamental age-old medical maxim of do no harm would be violated in the extreme and unnecessarily so. I was about to wake up and be subjected to the inappropriate and ineffective use of ketamine along without the inability to use cannabis that is so successful for this body. Here I was, about to wake up to the wrong use for surgical pain relief with ketamine, along with not being allowed, from one legal state to another, to use my cannabis oil in this, or any hospital at this time.

After enduring about five injections, it became clear to the staff that their solution was not working and I was left in horrifying pain, which is inexcusable in this day and age. A few good souls went to bat for me and before I knew it, they broke protocol and created a ketamine drip in the recovery room and slowly calculated and adjusted it so in time, my body began to respond and calm down.  Had it not been for their compassion, the suffering would have continued.

So, why is it their idea of an injection was not the same as a drip?

Ketamine can be used for anesthesia – so a big dose injected does just that, at least for this body! It not only can sedate you, but it can also send you on a trip of hallucinations, and/ or out of body experiences. It is not my way of having a good time to be feeling like I am tripping when I am just needing pain relief. Most of us living with pain want to find a way to still function in life with meaning and purpose, not be drugged out!

In a low dose, on the other hand, ketamine can provide much needed continual pain relief. My pain doctor, after seeing that this was one of only two things my body was able to metabolize for pain relief, ordered me some small dose ketamine HCL 10 mg troches. These are made in a compound pharmacy and used for home relief. This script can be taken every four to six hours. The ketamine troche is put either under the tongue or in the cheek to be absorbed.  Taken in a low dose, I am able to manage the pain without feeling like I am going under with anesthesia. I do find as a cannabis patient, I do prefer using my night cannabis oil instead for my main pain relief and enjoy resorting to using the troches for break out pain.

In the hospital for pain relief, the way to prevent the dreaded potential hallucinations and instead calm pain relief is with a low dose ketamine drip. My pain doctor had written down for the hospital use if needed, the following: .25 to .5 milligram mixture – as a continual drip. When the hospital finally decided to create this drip, and the calculations finally got correctly adjusted, I no longer was on weird trips but instead calm and feeling relief. My pain relief and my dignity were back and I was very grateful.

I just hope no one ever has to experience the horrible pain along with hallucinations I went through by having ketamine administered incorrectly for a pain relief medication. Try to stay away from those big injections and instead work to have the low dose drip. I would encourage you to see your pain doctor in advance if you are headed to a similar situation and hand deliver to the hospital the directions on how to make this delivery method. And please also learn from my mistake and be sure that they even intend to give you the ketamine if you are like me and have nothing else to turn to for relief.

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Authored by: Ellen Lenox Smith

There are 5 comments for this article
  1. Frances at 4:00 pm

    What you went through was bad enough, but for the fact it was NEEDLESS is what rips me about it. 9 years ago, when I began my trip down the chronic pain lane, I mentioned to my pain doctor (who, by trial and error had found the right drug combination that relieved the pain that was keeping me in or close to my bed; now that pain relief for patients has been made illegal, I’m back in and close to my bed every hour of every day, but I digress) I was concerned about the real or imagined uncertainty about the “what ifs” in my life. Such as, would an emergency room doctor withhold any pain medicine, IV or otherwise, after seeing my daily maintenance meds for my chronic pain in the national database for patients prescribed controlled substances? In other words, if I was out enjoying a beautiful day taking a walk (ironically, a walk made possible by my prescribed opioid regimen), and I fell and broke my leg, would my obvious acute pain be treated with something over and above my chronic meds, if but for the short term? Or would the doctor say “Oh, She’s already on two different opiates, one long-acting and one for breakthrough pain, I’m definitely not adding anything here, as she should have sufficient relief with her long-standing regimen.” And, dear reader, my pain physician smiled as I painted the whole scenario for him and he said, “Don’t worry. They’ll take care of you.”

    My doctor and I had this conversation 9 years ago, before what I call “The War on Pain Relief” began. But he could sense the subtle breeze of change, and he, besides being a brilliant neurologist and author, he was acutely honed in on the subject of pain, as that was his specialty and its taming and mastery and ultimately its complete control, a concept so elusive to most doctors, was his ever-present goal. Unbeknownst to the rest of us, he could see what at first was gentle breeze of change, coming harder now as a tiger charging its prey. We just did not know there was such a banal fierceness behind it – it blew the Tigers out of the way in which the destructive force of a hurricane that, once ashore, lost no strength but in fact built in and on itself; the first victims blown out of the water just before reaching dry dock, and those were the patients of their primary care physicians. They were told “no, I can’t refill your pain prescription, or they’ll come after me.”

    The necessary and caring art and science of the treatment of pain would die out in the few short years to come.

    My pain doctor saw this coming and had just published his fourth book on pain. He had, after years of having a successful neurology practice, decided to refine his focus more on his patients’ pain through the lens of what pain is as described to him by his patients. He took that information and found that a whole new, deeper level of understanding the mysteries of pain that he discovered needed further study and research. At the same time, however, deep in the cavernous halls of state capitols, a war was being planned against the very patients that my doctor was doing an excellent with. He was MANAGING CHRONIC PAIN to a successful degree. But my doctor could smell the stench of the acrid smoke where the fires were brewing to undermine his practice and countless other physicians’ practices who were managing their patients with chronic pain quite well. The writing was on the wall. What those unforgiving winds were blowing in was chronic pain patients had been grouped together, lumped in, with street heroin addicts.
    Unbelievable. Inconceivable.

    My doctor chose to go ahead and retire, as he was already in his mid-70s by that time, and he was already weary from so much regulation and government overreach of medical practices anyway, or so that’s my feelings. He was gracious enough to help us find satisfactory pain management clinics.
    I heard he passed away a couple of years ago…

    So here I am today, posting this because the War on Pain Relief is raging ever worse, every day. I’ll be having surgery on my shoulder for a torn rotator cuff, frozen shoulder, bursitis, and bone spurs soon. All this on top of the chronic pain I suffer, undertreated now because the War on Pain Relief insisted that cookie-cutter orders work for everyone, and politicians are now wearing the white lab coats.

    Where is the outrage from the doctors that policy-makers, not them, are treating their patients, and way undertreating our legitimate pain?

    Policy-makers, why are the voices of the chronic pain community not being heard?

    And, about my impending shoulder surgery, I may opt out of it, even though I can barely move my arm any more. I’m hearing the policy-makers are going after post-op pain relief, too.

    Human hurricanes can sometimes leave a large amount of damage to innocent folk in their wake.

  2. KatyJons at 7:59 am

    Ellen.
    What you went through is abuse. I am sorry for your unnecessary torture. Peace.

  3. Mark Ibsen MD at 3:32 pm

    OMG.
    Whatever happened to listening?👂
    Thanks for teaching us about advocacy.
    We all need to advocate vigorously for our patients
    And
    Patients advocate for doctors, at least the ones that listen.

  4. Rachel at 7:20 am

    I am so sorry you went through this. In my experience of major surgery they used a ketamine and morphine trip as I thing else worked and were surprised it took them two hours to get me out of the recovery room as it took that long to relieve my pain. That was the worst pain I have ever had, What was inexcusable is I was transferred after 2 weeks for 2 more weeks recovery in a cottage hospital run by primary care physicians who immediately without even seeing me, wrote down (ie. decreased) my pain meds. They bullied me for two weeks solid to agree to decreases in exact contravention of my my pain physician’s pre op advice. He was on holiday so I was stuck. All these primary care physicians admitted they had no training in chronic pain and they have treated me abusively ever since for complaining, breaking criminal law many times. I have been harassed, had criminally threatening letters from them, been blackmailed out of the PTSD their bullying gave me and have withheld safe care from me many times in the 6 years since. This is not libel, any of it. This stress means my health has never recovered although the surgery itself, to reconstruct my foot and keep me out of a wheelchair, was successful. My pain meds have had to increase x7 and my pain will never be medically controlled now. So I am living in iatrogenic (caused by doctors) pain for life.

  5. Suzanne Stewart at 6:44 am

    Ohh Ellen, this is heart wrenching! I’m so sorry that you had to go through this! I’m really glad it finally worked out. I feel badly for those who aren’t able to fight for themselves! Thank you for the article Ellen! You’re a true pain warrior !

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