Howdy folks. Trailer Boy here for an update.
Today marks two years since my last trip to Hoffman Estates, IL, for Dr. Lipov’s “Chicago Block” Stellate Ganglion Block for PTSD. My first block was in February 2011 and I’ve had six total.
If you’re unfamiliar with the procedure and my PTSD you can watch the Silence of the Chattering Head Monkeys video that my pal Ed made. It captures interview footage of my earlier blocks.
To recap, I have that pesky Complex PTSD — from probably about age two onward — and spent most of my life not even aware that there was a word for what I was recovering from. Some of that is because the information available on PTSD back in the 90s was scattered and thin and my symptoms didn’t seem to line up with the traditional descriptions. Some of that is because at the time of diagnosis, in my mid twenties, I was a practicing Baptist minister with a mile-wide anti science and anti psychology streak. A doctor and therapist both told me I likely had PTSD. And with therapy and a long stretch on medication, I wrestled it down to a manageable level while working in a high stress nonprofit environment and building the front end of my writing career. Still, in hindsight, I can see the symptoms quietly at work.
Then, between 2007 and 2010, I weathered a stack of losses and changes that often are the catalyst for bigger symptoms emerging later in the life of abused children now grown up. Night sweats and terrors, muscle spasms, panic attacks, depression, wild emotions of anger, fear and sadness. I was at my wits end by the end of 2010 when I learned about Lipov’s work.
That first block — a single injection to the C6 — wiped out ALL of my symptoms within ten minutes. Even the ones I didn’t know I had until they were gone. And that started a dance over the next five years as I would get “blocked” and then re-triggered by new life events once the block’s efficacy wore off. I was an unusual patient — not a veteran with single instance trauma — and I think I’ve been back for more blocks than any of the others. But finally, in January 2015, he gave me an upgrade — pulse radio frequency injections at the C3 and C6, hitting more of the amygdala with the anesthetic block.
I’ve been symptom free now for two years and for most of that two years have been passing through the same re-triggering waters that should’ve sent me back a few times by now. Nope. I’m certainly feeling the full range of my feelings — some even better than before — and I’m certainly having to do self-care and maintenance “like a mofo” to keep my focus. But the gears don’t get stuck anymore, the parasympathetic system kicks in, and I’m seeing, learning, understanding, grokking things far better than ever before. Do I still have PTSD? No way to know. And nothing to do but continue doing what I’m doing and hop a plane to Chicago if things change.
But from this place, two years out, and forty seven years of living with PTSD, I thought I would share some thoughts.
I think stigma and rigid views of PTSD as a mental disorder are interfering with its successful treatment. Lipov accidentally stumbled into using SGBs to treat it and that forced a shift in thinking — a pain doctor suddenly weighing in on a “mental disorder?” But: What if PTSD is a complex brain injury that can be treated with anesthetic? It appears to work in about 80%. Yes, I’m aware of the study claiming it doesn’t work — I know too many people who’ve had their lives changed to listen to one study. There are others underway and have been others before that are proving the case slowly. But there are also people profiting big-time from PTSD medication. And there are rigid ways of thinking getting in the way of progress (as if THAT ever happens.) So I advocate a broadening of the mind that re-integrates “mental illness” with the rest of the human physiology. Our brains are a part of our physical body. And old injuries to that body can have an impact. If we open our minds and think outside of the box, we may find ways to better treat a lot of illnesses that have been given that special stamp. Less stigma means less suicide, less violent acting out and more people being treated.
I also believe that my PTSD belongs to me and is completely my responsibility. Just like whatever load you’re carrying belongs to you. I think owning it and having the will to face it — and go find whatever tools needed — has been my biggest saving grace. Not just the recent symptoms but all the way back to before I had a label for it, when I was a young depressed Preacher Boy putting his foot on the path and saying “I am powerless over my shitty childhood and my life has become unmanageable because of it.” I’ve run into two kinds of people in the world of “mental” illness — owners and blamers. Blamers can’t really get better until they become owners (which honestly doesn’t seem to happen often.) And owners usually have to learn not to own Every Problem in the World before they can get better. And when I say own it, I try to own it all: My triggers belong to me and I need to understand them…and face them, not avoid them. No one needs to label anything for me — if we all labelled everything that might trigger a person with PTSD you’d never get around to dealing with whatever you were trying to label. Of course, another part of owning my PTSD is recognizing when it’s time to take a break from constantly facing it and say “I think I’ll skip this one” once the movie hits that spot that I’m not interested in experiencing. But the more I’ve faced the things that trigger me, the stronger and better I’ve become at managing and learning from my PTSD. So I am an advocate of exposure therapy with balance and self-compassion. Another part of that responsibility: I am responsible for what I do with my PTSD both to myself and to others. And PTSD definitely takes a toll.
One of the outcomes of these treatments that has been obvious both to my closer friends and to my therapist is that with each block, my cognitive capacity seemed to increase. The stretches of quiet in my head helped me untangle knots in my thinking and the most recent block — the dual injection — had a much more profound impact. Within a month or so, I saw the patterns in my life — in my behavior, in the behaviors of those close to me — that I had not recognized before and it gave me a perspective that felt like pieces falling into place in a complex puzzle. It allowed me to set new boundaries and in some instances, move away from or change relationships that had unhealthy or even toxic elements to them.
Another of the outcomes is that I’ve become more comfortable in my own, authentic skin and get more so the further out I get from my last treatment. Everyone’s C-PTSD manifests differently but follows a pattern. Pete Walker breaks out the four F responses nicely over here. I’m more of a freeze and fawn guy — depression and being wildly entertaining and super nice and over accommodating are parts of my PTSD response. I’ve never been a fighter but I’ve known my share — they bring in narcissistic defenses to burn down any deemed an enemy by their PTSD and don’t even know they’re doing it half the time — but my deep dive into story as a child, fundamentalism as a teen and even my earliest years back to writing in my twenties were manifestations of flight where I’d hide in those places because there were monsters under the bed that required hiding from. Later, when lots of work in therapy made flight more difficult, freezing and fawning became more front and center. My ability to “falsify type” as a gregarious introvert is a part of that skillset. It’s a great coping skill if you’re a shy, nerdy kid to become funny and outgoing at the push of a button. But notice that I’m not out there doing it as much anymore. And when I do, I’m not quite the same Trailer Boy that I seemed to be before. Funny thing: I’ve lost the desire to be that guy but he’s still there – a quieter version – and comes out from time to time.
Wow. This has grown into a larger post. But still, two years. And half of that time going through a difficult divorce. With no PTSD. That’s a big deal. I’ve learned quite a bit along the way and at this point, I’m symptom free and experiencing a much more manageable life. If you or someone you love has PTSD, take it seriously, own it, and get on the path in the direction of the help you need without shame or stigma. Bring your courage and your calliope. It’s your monkey and your circus. And you’ll be in good company with the rest of us monkey-packing circus clowns.
If you want to know more about the stellate ganglion block check out the Global PTSI Foundation or drop me a note. Several people found their way to Lipov through my website and I’m happy to help if I can.
Trailer Boy out.
Hi and thank you for your post.
I was wondering if you could tell me if DP or DR (depersonalization or derealization) was ever part of your condition and if so did the shot help or exasperate that part of your condition.
The block helped with all of the PTSD symptoms. Folks manifest them differently, but the block seems to work on the full symptom load. I’m four and a half years out now from my last so I’m more out of touch on how those are going for others.
Yeah. Late on all this I know.
Been having a couple of interesting years myself. I can’t say “you must dig out”, or, “you must write” of course. Just wishing you the best. Reading helps me keep it together. So I owe you good wishes for The Psalms of Isaac alone. (there’s also common decency)
Thanks! My last few years have been settling into a deeper and better peace. So life is feeling groovy these days.
Dear Ken,
Thank you for sharing your story! I am overjoyed to hear about your experience, as it strongly mirrors mine. I too have tried to keep an open mind as it relates to treating C-PTSD and find Pete Walker’s writings to be validating and educational. I would be interested in the discussing the procedure further with Dr. Lipov. Any relevant updates you’d care to share? Again, thank you for sharing!!
CK
Dear Ken,
I am getting my SGB block on Saturday and I’m getting apprehensive all of sudden . I’m scared. But if I have been battling it for so long and I feel like the little girl inside of me Is crying out. I figured why not just take a chance and maybe this chance would change my entire life. Your story touches me and it offered me comfort .