My Story: A Treatment Journey For Chronic Pain
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
“My personal challenges are big without this! Those that told me no only made me want it more!”
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 customcompounded 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!
“I am proud of the army of volunteers that I have helping me! I am proud of the number of doctors and nurses that our patient education event is attracting-wow!!”
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.