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.
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.