Pain, anguish, and sadness-pocket emptying experience too long put off— that entirely unexpected and intense aspect began as soon as I started typing
My Personal Experience with Idiopathic Truncal Dystonia
Gives a new and deeper meaning to psychosomatic
Note to the reader:
I finished this piece over 24 hours ago and have been pondering where to submit for publication. KTHT was high on my list and after just reading Jean Carfantan’s beautiful poem on the healing power of illness, the synchronicity has to be abided and thus I submit the piece to my spiritual homegroup.
Glossary:
Dystonia: a condition whereby the patient displays involuntary muscle movements; usually a symptom of a disease or condition. Differential from Parkinson's is its positional nature; e.g., only when standing.
Idiopathic: Not caused by another disease or condition; primary. Laymen’s translation — cause unknown.
Introduction:
In the second half of 2014, at age 47, my physical conditioning peaked. I began running in April and by September and October I ran two ~1 hr 41-minute half-marathons — that's a 7 minutes 42 seconds pace. Shortly thereafter, a hitch developed in my walk. By December anytime I stood or walked I looked like a perpetual prayer at the Western Wall. My dear friend, trying to make light of a disturbing trend, started calling me “weeble” of “weebles-wobble-but-they-don’t-fall-down” fame.
After a chiropractor did what he could without result, at his suggestion I saw a neurologist in June 2015, who referred me to Dr. Steven Frucht, the head of the Movement Disorder Department at Mt. Sinai Hospital in Manhattan, where I lived at the time.
The Diagnosis:
Not long after seeing me, Dr. Frucht co-authored: The Phenomenology and Treatment of Idiopathic Adult-Onset Truncal Dystonia: A retrospective review.
Focal dystonia is the most common type of adult-onset dystonia…Truncal dystonia is characterized by involuntary contractions and postures of the paraspinal, abdominal or chest muscles. Idiopathic truncal dystonia of adult onset has only been previously described in a few case reports and small case series. [emphasis added]
In the seven-year period beginning January 2009, 7 patients of the department presented with this condition and were discussed in the paper. Unbeknownst to me until doing some research and stumbling upon the paper in 2016, I am patient #5.
The majority of patients were refractory [means treatment ineffective] to 3 or more oral treatments and only two patients exhibited significant functional improvement with botulinum toxin injections. One patient enjoyed significant benefit with bilateral internal globus pallidus deep brain stimulation [“DBS”].
DBS is brain surgery — the housing of pacemaker batteries in the chest and the wires are tunneled up the chest to behind the ear where they are connected to leads that have been installed in the brain through boreholes drilled in the top of the skull and exit holes drilled in the skull above the ears. The theory is it corrects the misfiring of neurons in the motor-control centers on each side of the brain. Fans of the television show Ray Donovan will say, “oh” to my now saying it’s the surgery that Terry had for his Parkinson’s. The surgery is 100% effective for Parkinson’s, not so for dystonia.
The paper concluded:
Identification of this highly disabling condition is important, as most patients are refractory to the typical oral treatments for dystonia. Early treatment with botulinum toxin or DBS might be considered to reduce the degree of functional impairment.
The typical oral treatments are Artane and Baclofen. I could not tolerate Artane and Baclofen failed, as did high doses of botox, which meant that my subcutaneous 6-pack muscles were not the primary actors— I was being pulled forward and to the left by a deep spinal muscle that no needle can safely reach.
Dr. Frucht with his vermiform bedside-manner was too quick in my view in recommending DBS, which for me the prognosis was 50/50. At the time, I was physically strong enough to cope with the awkward gait and any risk of death did not make sense. Next, I saw Dr. Susan Bressman, at Mt. Sinai-by-acquisition, who is wonderful (and is Michael J. Fox’s treating physician) and thinks outside the box like I do. She tested for all the known and suspected genetic markers and then some more— nada. At my suggestion, we tried Klonopin and for about 4 months I had total relief. Then I developed tolerance to the drug and the condition returned worse than ever — very very depressing.
I then tried Dr. Stanley Fahn, the granddaddy of the field at Columbia Presbyterian, and confided in him that certain street drugs provide temporary relief, which he found fascinating and we tried to mimic the results with legal drugs but to no avail. Finally, in the first courageous act of my life, in January 2019 I opted for the surgery (3 in total over 6 weeks) with Dr. Brian Koppel, at Mt. Sinai West, whom I cannot praise enough.
Alas, DBS did not work for me, and unbeknownst to almost everyone in my life, what did work was yet another street drug to which I became addicted, using practically all-day every-day. Everyone thought the surgery worked. The level of use that I kept hidden astounds me.
The Cure Realized! — I Am Now Both Drug and Dystonia Free for Over 7 Weeks
In 2015 and 2016 I dated a karmic soulmate who suffers from migraines. She gave me a book called The Divided Mind, The Epidemic of Mindbody Disorders by John E. Sarno, M.D. This book conclusively establishes that many people who suffer from chronic pain do so because they are trauma victims and the physical pain is their subconscious mind shielding them from severe emotional pain.
Jump forward to a year after the surgery when — as many of you know, and for those whom this is a reveal you can read any number of my stories to find the details, I experienced the Thor’s-Hammer-knee-capping-version of spiritual awakening in March when my lover died in the suddenly-tragically-without-any-warning-whatsoever-here-one-nanosecond-gone-the-next-manner.
Shortly after awakening, I started to seek the counsel of my spirit guides, facilitated by a channeler, Ane. In addition to my higher power, Rama, an avatar of Vishnu, part of the Hindu holy trinity, I have four guides— 1) a mother type to love and nurture me, 2) a nurse with a Sanskrit name, 3) a Native American who is my fiercest protector and 4) one whom Ane describes as reminding her of an accountant, and has dubbed Jimmy, as in Olson, whose role is to offer me practical advice, and who presented with a tremor. In May I had an epiphany — Jimmy was signaling to me that my dystonia is a message from my soul (subconscious) to finally get my fucking house in order. I then knew that once I was on the right path, the dystonia would disappear.
I knew that meant both cessation of self-medication and getting myself on the right career path. I had decided I needed the former well before the epiphany and I knew that would happen once I relocated from NYC and without the need for rehab as I know more than rehab could possibly teach and had already achieved a level of spiritual awakening far and away more aware than results from conforming with the followers in a 12-step program.
At the end of September, I came to New Hampshire for my lover’s celebration of life and spent a week here without any “medicine” and did not have any dyskinesia until the morning I woke to head back to NYC. I knew then where my salvation lay.
I finally moved here on December 3, 2020, and have a clean bill of health. So to bring this back to Frucht’s article, before one resorts to DBS for idiopathic truncal dystonia, or any other drastic intervention for any seemingly unexplainable medical condition, try to look deep within for an underlying spiritual malady and seek your path to spiritual awakening and awareness.
As for the right career path, read my work and mark my words — I will be a very-late-to-bloom syndicated columnist.
In Rama I create,
PS: I really had no idea that I have 5 years of physical and emotional discomfort hiding in pain-pockets cathartically discovered this morning.
Epilogue (10/5/22): Last December or January, I had the batteries turned off because I felt that the signals to my brain were causing me to speak very fast. I was correct, my speech returned to normal. I also have had slight contractions. Nothing I can’t live with. Was I wrong in my assessments of the efficacy of the surgery and the psychosomatic nature of my condition? No. On a scale of 1–10 my condition was a 10 before and even after the surgery (when I wasn’t high) and now is at most a 2 and not constant. I think that I have any symptoms means that I still have work to do.
12/20/23 edit: 6 months ago, 18 months after turning the devices off, the symptoms progressed. I decided to contact the doctors to turn the batteries back on. “While the symptoms are still very manageable, they are impacting how I enjoy my life. I just went for a mile and a quarter walk and the strain involved in dealing with the contractions significantly diminishes the enjoyment thereof. So, let’s turn them back on and hopefully I’ll remember that I still have work to do on myself.”
Since then, the programmer has ramped up the signals but not nearly as high as in 2020, and my symptoms are quite relieved. I move fine. More than fine. I easily go for 8-mile walks. I generally only notice the contractions when standing still for more than a few moments and they are very slight.
