By: Katherine Itacy, Esq.
Dated: November 13, 2017
Living with Type-I (juvenile) diabetes can be really frustrating and painful, but until I started experiencing symptoms of arachnoiditis in December of 2015, I didn’t quite know just how frustrating and painful it could be to live in my body.
Arachnoiditis, as I would come to quickly learn, is an incurable spinal nerve pain disorder that is referred to by some as “humanity’s worst pain.” While I haven’t experienced a wide assortment of pain in my life, I have endured well over forty surgeries and procedures, so I can objectively state that it is, indeed, the worst pain that I have ever experienced. It has included: the sensation of electric shocks to the base of my spine; a seizing pain up my entire back; a stabbing pain in my lower back that (no pun intended) feels as if someone has plunged a knife into the body part and left it there; throbbing, pulsating pain to the lower back, buttocks, legs and feet; and severe, persistent episodes of muscle spasms, including one episode that made my entire body violently convulse for over three and one-half hours straight. I have also become unable to sit, stand or walk for more than a few minutes at a time. The pain has made me double over; other times, it has made my knees buckle beneath me as I stood.
Besides the obvious frustration of a former elite athlete now being unable to do any aerobic exercise at all, the more frustrating part for me has been the fact that the pain is so bad, I have been unable to maintain my focus or attention on pretty much any mental task for more than a few minutes at a time. I began to notice that whenever I would be doing my work, my brain would get distracted and redirected to the pain. And since my job as a legal research and writing specialist required me to constantly conduct legal research and draft legal court filings (both of which requires an extreme amount of mental focus), that meant I could no longer do my job. Leaving my job nine months ago crushed me, because it symbolized so much more than merely leaving a job – it symbolized the end to what I truly believed was my calling in life – criminal defense of the indigent. My days now usually consist of laying in bed for around 22 hours each day, and taking approximately 34 different prescriptions and supplements in varying quantity before and after each meal. If the combination of medical conditions and pills aren’t causing me to fall asleep for 4-5 hours in the afternoon, the pain is usually waking me up or keeping me from sleeping.
Following my diagnosis, I have had a number of MRIs and CT scans and EMGs done on my body. I have had nerves burned, facet joints injected with steroids and a spinal cord stimulator temporarily implanted – all to no avail. And by the way, if you’ve ever wanted wanted to know what it feels like to have your spinal cord plucked like the strings on a heavy metal guitarist’s instrument every time you sneeze, cough, clear your throat or laugh, give the spinal cord stimulator a whirl! To help you understand my current level of pain, I have asked my new pain specialist to try implanting the trial version of the stimulator in my back yet again, despite the fact that just nine months ago, I fiercely vowed never to give it another try.
Another thing I have discovered over the last two years is that there are very few doctors who understand the disorder well enough and are motivated enough to try and find alternate treatment methods beyond the typical prescription of Lyrica, Cymbalta and opioids. I have met with numerous neurosurgeons, neurologists and pain specialists; the majority of whom left me with little more than a shrug of the shoulders and the reassuring opinion that there is nothing more they can do to help me.
It wasn’t until I found, consulted and met with Dr. Forest Tennant in West Covina, California, that I felt there was a doctor out there who cared to do more than just send patients home to suffer from “humanity’s worst pain.” When we met in person this May, Dr. Tennant explained that he was supposed to retire almost twenty years ago, but decided to stay on as a pain specialist in order to focus on finding a new treatment protocol for arachnoiditis patients. He did so after treating cancer patients in Los Angeles for many years. Sadly, it was his arachnoiditis patients who were killing themselves in order to stop the pain. Others were left partially or completely paralyzed, in need of catheters in order to void their bladders, and/or suffering from dementia.
Since 1998, Dr. Tennant has reviewed hundreds of MRIs of arachnoiditis patients, and has come up with alternate treatments to the typical pain treatment protocol that most other doctors use. He has refused to believe that there was little to be done to help patients with this horrendous disorder. Excitingly, his new treatment regimen has afforded his patients significant reductions in their daily pain levels.
Unfortunately for me, with my almost lifelong diabetes in play, the treatment protocol has not given me much relief. The hormones that have helped almost all of the rest of his patients are affecting my blood sugar levels too much to be continued. I also have significant diabetic neuropathy in my arms and legs in addition to the arachnoiditis, which means that most days, my legs already feel like they’re on fire.
Thankfully, just knowing that there is a doctor like Forest Tennant out there, giving his all in order to find more relief for his patients, gives me so much hope. But for now, I remain in so much daily pain. I try not to complain too much about it, especially since complaining does little to change the situation for the better (other than let me vent my frustrations). Unfortunately, trying to get people to understand exactly how much pain you’re in is difficult when they can barely see any physical manifestations of it. To that point, I’ve become pretty good at masking my pain in front of others. Since I’ve been masking the sensation of feeling drunk every time my blood sugar has gone low for the last 29+ years, I’ve certainly had some practice in this department. But just because I am able to mask some of the pain does not mean that it isn’t there (in full force).
It wasn’t until I began masking my own pain that I started to wonder how others with chronic pain managed to get through their days. How do they function through the pain? Do others in their lives fully understand and appreciate their daily struggles? How many people with chronic pain disorders are out there, unknown to the rest of us (like Lady Gaga, who recently revealed her struggles with chronic pain in her new documentary)? Just because some of them are able to function and complete some daily tasks does not minimize the amount of pain they could be feeling. In fact, sometimes it’s those who are suffering silently who have, perhaps, more inner strength than the average person.
If you or a loved one has been living with a chronic pain disorder, I’d love to hear about your coping mechanisms and support systems. Even if you just want to vent, please feel free to either email me or leave a comment below.
Wishing you and yours health and happiness!
– Kate
Katherine Itacy 