Howdy, folks!
Hard to believe it’s summertime already! Don’t know ‘bout y’all, but I had a pretty busy spring! (Medically speaking, anyway!) Spinal cord stimulator trials, epidural injections, scans and imaging… ketamine therapy, it’s been fun!
I counted 26 different Doctor’s visits, just from Jan - April, lol! (That’s not counting ketamine visits!)
And I journaled some of it along the way, just to try and get it out of my head. Not really stuff I planned to “publish”, ‘cause it’s boring as hell, and who needs more boring?
But anyway, I’ve been nudged, and pushed… “if it helps even one person” yada, yada.
So yeah. Maybe so.
So I’ve gone back, and pulled together some stuff I wrote months ago - about my consult with the original surgeon, and how that went, and my current pain doctor… even wove in a little about the ketamine therapy, too, somebody might find that mildly interesting.
And where that leaves us now.
Again, I hope it’s not too boring, and I do hope it helps somebody. We lean on each other, right?
Last I left it (I think), I’d just done a new round of RFA’s1 with Dr. Spicer just before Christmas, with no relief, and he’d recommended me back to the original surgeon, see if he could spot anything, or had something else up his sleeve…
We pick it up from there.
Without further a due… a recap of my Spring, 2026, in a nutshell. (Again, written mostly months ago. If you haven’t read my “Context” post, go read it first, it helps put things into perspective. 😊)
Chapter 2: Content
So, I walk into my doctor’s office a couple months ago, right? [~May]
I say “doctor”, like he’s one of the others - no, he’s the man! This is the original surgeon, the one that did both the disc replacement and tumor surgeries - one of the top neurologists in all of Dallas (the one that gets negative reviews on Social because he’s sometimes late for an appointment, because he’s doing emergency surgery somewhere, because he’s on so many hospital’s “call lists”!)
But Dr. Sal and I have always hit it off. You can tell he’s a smart man, with a bit of an ego to match, but I’ve never been intimidated by smart people, and he’s always taken an interest in my case. I think that it helps that I’ve always tried to be friendly (I hear some sick people can be quite bitchy!), and ask pertinent questions, and try and take an active part in my own recovery. Also, I think he see’s me as a challenge, too, not your run-of-the-mill neuropathy or diabetes patient. Somebody that needs fixing, something he was born to do.
So anyway, I go back and have my consult with the surgeon, and we schedule a fresh round of full imagining - CT scan, X-rays, MRI, cervical, thoracic, lumbar, with and without contrast - the works. (MRI’s… god, that was a horrible day!)
We get that done, and I go back a week later for a review…
Dr. Sal doesn’t find anything structurally wrong, none of the hardware has slipped, there’s nothing new or obvious causing my problems… that’s good, right? I mean, we don’t want to see anything getting worse!
Dr. Sal has got all my medical records by now, he can see what all the other pain doctors have tried - all the ablations, and trigger point injections, and ligament stretches, etc. The only thing new he can offer is trying a Spinal Cord Stimulator again (something I’ve already tried twice before!), this time running the leads up higher, closer to where the tumor was…
Folks, we give it a try - a SCS trail - for the third time...
With a full blown SCS, they implant the controller under your skin, on your side, or around your stomach somewhere, I’m not exactly sure. But they do a “trail” first, to make sure it works before they do the implant - they run the leads into your spinal cord as usual, but they tape the controller to your back, and you walk around for a week, giving it a good “test drive”. It comes with a modified iPhone and an app, you can turn the setting up or down, find what works for you…
The original surgeon is doing it this time, one of the best doctors around…
My friends, once again we do the trial and it doesn’t even move the needle. Not even a little bit.
They’ll tell you “it won’t completely take all your pain away”, but the goal is “at least 50% better”. (I find out, too, you’ve got to report at least 50% improvement for insurance to cover it! Fuck insurance, you money grabbing vultures.)
We tried, folks, and I wanted it soooo bad. I experimented with all the settings, turned it up way past the “comfortable” threshold, tried everything.
But nada. In my mind, using a little imagination, I could optimistically say it helped maybe 10%. (But if I’m being honest, it was really more like 1%. Maybe.)
After a week, I go back and one of the nurses and a very disappointed Boston Scientific rep (he was not a happy camper - I think those guys get paid on commission; how fucked up is that!) un-tape the controller (finally! I can take a shower again!) and remove the leads, and I schedule the next followup with the surgeon, hoping he’s got something else up his sleeve, ‘cause that didn’t work…
Folks, I really did think the good doctor had something else in his bag of tricks. That didn’t work, we’ll take it to another level, let’s give “this” a try"… I mean, he’s not just a doctor, he’s the surgeon…
So I go back and see the doc, a followup from the SCS trial.
I’ll never forget, he asks me, with a perplexed look on his face, “So that didn’t help at least a little?”
I just shake my head. I tell him I jacked with all the different settings, turned it up, turned it down, tried turning if off for a while, everything. “No, I can’t say that it did.”
He pauses, and slowly crosses his arms, and looks at me and painfully says six words I’ll never forget:
“Mr. Barnes, I think you’re stuck.”
That wasn’t exactly what I was expecting to hear, and in my mind, I immediately re-play it, except I’m substituting the word “stuck” with something else that rhymes with that…
And it wasn’t “duck” or “truck”.
“Mr. Barnes, I think you’re fucked.” is what replayed in my head.
Coming from the surgeon, probably the smartest man I’ve interacted with…
That hit hard.
The only thing he could suggest was “you might try a pain pump”.
I’ve looked at those before, it’s another implant, this one pumps micro-doses of some type of painkiller (usually morphine), directly to the nerves in question. I’ve looked into it before - there’s pros and cons, it’s definitely something I filed in my “bucket of last resorts”.
Is that where we’re at now?
I asked him about an ESI (epidural steroid injection), it was something Dr. Spicer was pondering when he referred me back to him.
He scoffed. “Might help temporarily” was his reply, shaking his head.
Shortly after that, I circle back with Dr. Spicer and fill him in - “here’s all the new imaging, a SCS trial didn’t work, you might try a pain pump, he was less than enthusiastic about an ESI”, blah blah.
I gotta hand it to Dr. Spicer, he’s willing to at least try. We do indeed schedule an ESI (hell, I’ll take even temporary relief!)
So a week later, and I’m back on the table, wrapped in my surgical gown for the up-teenth time… (seriously, I should just buy my own by now. Something floral, lol.)
I get the ESI, and it did indeed seem to help. For a little while. Like, for a couple hours, maybe…
A week later, I’m back in Spicer’s office for a followup, in as much pain as ever.
I remember, he had this pained expression on his face, as I tell him “nope, that didn’t help a bit”, like he possesses a small sliver of that rare quality some call “empathy”.
I remember, too, he shook my hand, in earnest, like 3 different times. Kinda like the way you’d shake someone’s hand and wish someone well, before they head into battle. One they weren’t likely to return from.
It was obvious that he, too had exhausted his options.
Good man, I liked Dr. Spicer.
So, where the fuck does that leave me now?
The way I see it, here’s my options:
I might give the pain pump a try. Dr. Sal did refer me to two different specialists that do pain pumps - one of which wouldn’t even see me, because they noticed I’d already seen a pain doctor that did pain pumps before (PD #2) and didn’t do it then, I guess that raised red flags? (Fuck them.)
I did get a call from specialist #2, and went in for a consult. Nice guy, he answered all my questions, we talked about the different painkillers they can use, and why I didn’t do it before - marine snail venom - a big no thank you. Even that doctor agreed, the correct dosage window with that stuff is so small, and if you get it wrong… that shit can fuck with your head. That’s all I’ve got left, we’re not doing snail venom…
I’ve still got questions, but they can do a “trail” (with morphine), just like with the SCS, to see how much it might help. Right now, they’re setting things up with insurance (always gotta deal with the MF’ing insurance!), and I’m waiting on a call back, but we will probably do the trail…
But permanent? I don’t know, I’ve still got questions. I’m leaning against it, the trail better show close to 90% improvement for me to put myself through that (the implant is not a trivial surgery!).I could always get back on the ol’ opioids, they don’t kill the pain but they do help numb it... Maybe the gastroparesis won’t be quiet as bad this time, would throwing up only twice a month (as opposed to weekly) be that bad? But oh, I really don’t want to go back down that road again…
Ketamine, I could keep exploring that. I haven’t mentioned yet, I did follow through (successfully this time) with my previous attempts to try ketamine infusion therapy - just before the SCS trial - I did 6 infusion treatments, spread over 3 weeks. That was… interesting. 👽🚀🎇
My first impression, as someone with a little previous experience with psychedelics, was I couldn’t believe how smooth the experience was.Oh, you trip balls, for sure! I mean, you’re out there, floatin’ through space, you got your eye shades on, and your headphones, playing chill “space music”, and you’re trippin’ big time!
The Best Ketamine Playlist (Spotify) But no edginess at all, no “grit your teeth” over-stimulation that some “other” drugs sometimes cause.
I told one of the nurses, as I was coming down the first time, that “I just floated on a thousand clouds, went over a thousand waterfalls, and played with a thousand bunnies”. She smiled and laughed.
I described it to the nurse anther time as “riding rollercoasters with Jesus”, lol.
Oh, Ienjoyeddidn’t mind the experience, for sure. And medically speaking, I honestly do think it did help, a little.I mean, there’s all this research about “neural regeneration”, and “forging new pathways” with psychedelics, and shit about “neuroplasticity”, I do think maybe there’s something to that. I will say, without question, the ketamine treatments did help as much or more that all the other procedures we tried before. Put together! (I mean, anything is greater than zero, if I remember my schooling correctly!)
Thing is, it’s not covered by insurance, and it’s expensive. If I knew for sure it could lead to significant, meaningful improvements, it’d be a no-brainer. But is it worth it, if the benefits are only slight, or just imaginary… ?I don’t know, keeping my options open.
Or I could learn to just fucking deal with it (the pain).
I mean, I do have blessings to count - I can stand, and I can walk! I can drive myself, I don’t need a caddy. I’ve still got my mind, even if so much mental energy is burned combating the pain signals. My fingers work fine (even if too many other body parts don’t!), I’ve still got some kind of life ahead of me, right?
I mean, I’ve got almost 6 years of experience in learning how to “carry on”. I can get even better at learning to just “block it out”, the pain, right? It’s not going away, so you learn it ignore it? Right?
Acceptance. Adaptations. And carry on.
I’m struggling with this one. (My therapist suggests I’m suffering from “grief”. I guess, once again, she’s not wrong!)
(Now I can think of another option or two, but we’re not going there. Yet.)
[Present day, July 14, ‘26.]
Ok, 99% of all that was written months ago, much closer to the time that it happened. I’ve had some time to process it some more, and I’ve got some minor updates, stuff I can throw into another post.
I do want to add one last “chapter” I’ll call “Consequences” - expand around “where do we go from here”, and “how the hell do we get through this shit”.
Might be a little more philosophical, but I do have a few more things to say.
And then that’s it, no more about me, I promise. I do have some other hot topics I want to get to - a deeper profile about my dad, and another about my HS sweetheart… they tie together, and lead up to another post I really want to get to before “I can’t anymore”.
Another story I feel obligated to tell, my feelings about Religion! (Yeah, baby, that’s right, we’re going there, oh yeah, oh yeah! 🤣😁)
And then back to some fun stories about anacondas, and sports, and maybe some other people I’ve had the pleasure of knowing. We’ll see where it takes us…
Till next time, rainbows and sunshine, y’all! Cheers!
Radio Frequency Ablations, aka a “nerve burn”. I’ve lost count…