Since my article for the National Pain Report about giving up pain medication, I’ve been asked “How have you managed your pain without the medication?”
My post-surgical treatment journey started out with occupational therapy and a personal trainer. I have always believed that I could stave off just about anything with vitamins and hard work. I had a lot to learn! My physical journey, however, was only half the battle.
The other half?
What was inside of my head.
What good was I if I couldn’t go to work anymore? I had fought so hard to earn my degree and land that great job. Suddenly, I couldn’t even lift pans to bake. My daughters had to help me wash my hair in the sink. Simply brushing my teeth was a painful struggle. As time dragged on, it only got worse.
It was time to think about trying something different.
Together with a really great doctor, I moved forward onto trying lidocaine gel. Not only was this a sticky mess that never did soak into my skin, but it was horribly difficult to apply since I have allodynia which is hypersensitivity to touch.
The agony of applying it was not worth whatever relief it promised. The same could be said about the custom-compounded Ketamine cream. I had high hopes for this goldmine in a tub! At $200 per ounce, I fought my insurance company to pay for it. I tried really hard to tolerate the physical application process in order to see if it would benefit me before its brief 30 day expiration.
Next came the TENS unit. I think that was a means of distraction. I still don’t quite understand that one, but my insurance company paid a lot of money for that little guy! ?
It was at that point that my doctor strongly recommended that I try the meds to “break the cycle of pain” as I referenced in my last article. Many of you have written to me asking if I tried other combinations of meds before I gave up. Yes, of course I did. I have a fantastic doctor that works as my partner. There were the nerve stabilizers, narcotics, anti-depressants, sleep aids, anticonvulsants, steroids-many different kinds in many different combinations and dosages. The meds simply were not the solution for me.
I then went to the Stellate Ganglion block. That was a pretty scary experience for me. I didn’t realize that I would not be sedated until I arrived. Whoops-someone missed that memo! This process involves sticking a big needle through the front of my neck, while lying on my back, to get to the front side of my spine with a shot of lidocaine. They had to be sure to go to the side of my voice box and my trachea. They told me when I could breathe and swallow. I was instructed to “blink hard” if I felt something odd. I could see my reflection in the Fluoroscan, which was really the last thing that I wanted to see! I looked like Frankenstein with that needle sticking out of the side of my neck! The process seemed like it took hours, although I am sure it didn’t. They warned me to let them know if my mouth tasted like metal. What does metal taste like? They also warned me about what my face would look like. Whoa! Half of my head was paralyzed! Luckily that was temporary. The block didn’t cut the pain either-but what an experience!
Next I tried a lidocaine infusion called a Bier Block- also very scary! I needed a tendon surgery on my CRPS arm, so they combined the surgery and the Bier Block all in one. For this procedure, they put a double cuff at the top of my arm to stop the blood flow, punctured my arm in several places, and used a spiral motion to drain the blood from my arm. They then filled my arm up with lidocaine while quickly performing the tendon surgery. There is a method to this madness. The science is timed. They know exactly how long it will take my body to metabolize the lidocaine once they let the cuff go and allow the blood to flow back into my arm. This was successful and did provide me with two weeks of reduced pain levels. The problem is that it was quite an invasive procedure to endure every two weeks for the rest of my natural life.
It was suggested that I have a Spinal Cord Stimulator implanted at this point.. As much as I hated having CRPS in my arm, I could not bear the thought of having it in my spine as well. The SCS surgery opened up an opportunity for the CRPS to spread to my spine. I understood the risks and benefits and decided against that option.
I wanted a less invasive treatment option and found Calmare Therapy. This seemed like the perfect choice for me! It was drug-free and non-invasive. Calmare Therapy is an electrical stimulation that works to scramble the pain signal in the brain. It tricks your brain into thinking you are not in pain. I was skeptical. I went in there thinking it would not work. To my surprise and delight-it did! It reduced my pain to virtually nothing while I was connected. Once the machine was turned off, the pain returned. It took quite a few treatments for me to have reduced pain while not connected to the machine, but it worked.
I used that technology for two years. So why did I stop? In my case, Calmare provided exactly what it advertised-pain relief. Anyone with CRPS knows that this disease is so much more than simply pain. Calmare was not able to address the horrible exhaustion, it was not able to alleviate full body affects I feel every time the barometric pressure changes, it was not able to help my body heal from injuries, and it could not prevent the inevitable and unpredictable flares. I was still sick. I was grateful-but I still kept looking through research and my daily advocacy in our support groups.
During the late Spring of 2014 while planning the Power of Pain Midwest Pain Summit, I learned about a new treatment. I went to The Neuroscience Center in Deerfield, Illinois to solicit them to be sponsors for our Conference because I knew they offered Hyperbaric Oxygen Therapy and I wanted that represented at our Conference.
While asking Dr. Steven Best for money, he casually mentioned that he had “TMS w/Ketamine” that could effectively treat pain. “Wait-what is that?” My thoughts began to ramble-out loud. “I’m not doing ketamine. That is a horse tranquilizer!” Followed by, “You said TMS w/Ketamine, what is that and why haven’t I heard of it?” “Is it really possible that there is a treatment that I haven’t heard of?” To make a very long story short, he explained to me that he had combined two treatments, Transcranial Magnetic Stimulation and IV Ketamine simultaneously, and had patented that technique into a new treatment. The two have a synergistic effect on each other. We sparred about it for a while. I didn’t believe him. True story! Clearly as a doctor he knows a lot more than me and I was not able to argue with him for long, so I ended up challenging him to “prove it” to me.
I was irrationally terrified of the ketamine portion of the treatment. The TMS didn’t intimidate me. I went in to the clinic and watched 16 different patients receive treatment (with their permission of course) and I interviewed 4 of them. Go ahead-call me a big chicken! It is all true! The thought of putting a dissociative drug into my body, and not being in complete control, froze me with fear. You know how this story ends. I conquered my fear and became a patient.
My desire to get better was bigger than my fear of the unknown.
This treatment is not a quick fix, by far. There are some diagnostic tests done first. They take a look at the brain to see how much damage there is and what needed fixed. No one else had done that! Such a bittersweet baseline. We can’t fix it if we can’t see it’s broken, but it stinks that it is broken! This treatment starts in the brain, which is the source of the problem. It works on the inflammation in the brain. Once the brain is functioning properly, then the brain can begin to heal the body. It was a 6 month long process that took a lot of commitment, but every symptom that I had has been lessened.
I am not cured. Such a thing does not exist at this time, although I will never lose hope! I still need to be careful to take very good care of myself and feed my body with rest and good nutrition. Since these treatments, I am now able to go without wearing compression sleeves or braces to keep the world from touching me, I can wash my own hair, I can feed myself with that arm, I can dress myself without assistance, and I can achieve almost a full extension of that arm. You can no longer see my disability, although I prefer to call it a “challenge.”
It’s a long story – but most journeys with chronic pain are long ones, aren’t they!
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