Surgery-age: in two weeks I will be a cyborg

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Really interesting story, well written too. Being in pain all the time is no way to live. I'm recovering from having a large peptic ulcer for years (and I'm only 18), which I know is small peanuts compared to your condition, but it fucking sucked. Now that I'm on proper meds life is much better, and I hope you can feel as good as I'm feeling these days.
 
echoshifting said:
:lol I'm working on it, I'm working on it!

The first part took awhile because I was prepping for a trip; I wrote it from the train. Now that I'm here it should be easier to find the time.

Anyway, thanks for all the positive feedback; I was expecting less "WOW" and more "get to the good part!" :D

edit: One little tidbit I forgot: Dr. Stacey actually upped my fentanyl dose after installing the stim...less than a month before deciding I didn't need any at all. Should have mentioned that, as it was one of the main factors that led me to the conclusion he was not looking out for my best interests.
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You should write a book, your posts have been incredibly interesting and informative. While I have no experience with medical issues anywhere near yours, dealing with psychological issues I can sympathize with your opinions on doctors and specialists. I hope the doctors you've switched to are actually helpful.

Can't wait to read Part 2 D:
 
I don't know why - maybe it's the length of the story or the way it was written/described - but this would make a great graphic novel. And I don't even read comics.

Waiting for part deux...
 
OP, I wanted to let you know that I enjoy your writing a lot, I can only hope that your current condition is a lot better than what it was months ago.

Also, hurry up and post part two! :D:lol
 
Great read. I'm subscribing too. Looking forward to the next update. Not that I can add anything new, but I hope things work out as best they possibly can for you.
 
Great story. I have much appreciation for people who go through this kind of stuff, I can't imagine going through myself.
 
God, this is a sick story. I am not at all surprised at how the doctors treated you. Sickened, but not surprised. I completely relate to wanting to avoid dealing with the bullshit, because of the huge waste of energy just to get a doctor to listen to you.

Also ya, doctors don't understand opiates or how to prescribe them. That's extremely dangerous to just cut you off (or to increase it to that level so quickly). I had a similar--but much less extreme--experience with my ruptured disc. Went from 25 vicoden a week, which just got me through the pain of sitting in my car to drive to work. I'd pop 2-3 just for a one-way drive, and then suffer the rest of the time since I knew I didn't have enough to keep me pain-free all the time.

When I finally convinced my doctor that I wasn't faking, it wasn't a muscle strain, and I wasn't a drug addict, he increased me to unlimited oxycodone. As much as I asked for, I got; the only stipulation was I had to come once a week in person to request it (that's another peeve--going anywhere when you are in extreme acute pain just sucks).

Of course, when you're in more pain than you've ever experienced for longer than you've ever experienced, and suddenly have an unlimited supply of something that will get rid of that pain...well, I was using a lot of it by the time I finally got surgery to fix the problem.

After surgery, I got percocets for the surgery incision, and they did nothing. It probably 1/2 of what I had been using pre-surgery, so the withdrawal symptoms started as I recovered.

The surgeon reduced me to vicoden and then codeine. He was actually super cool and gave me more than he normally would for pain. I told him how much I'd been taking pre-surgery, and I wrote out a schedule for slow reduction. But it still sucked. There's no easy way to reduce off opiates when you've been taking them for a while. I can't imagine the hell it would have been had he been a dick and just cut me off cold turkey.

The withdrawal was the worst thing about recovery. The surgery itself was easy, and after 3 years of slowly building back strength and flexibility, I feel about 80-90% back to normal.

Oops, I didn't intend for this post to end up about me. Your situation is way more extreme. I can understand the system you're dealing with, but can only imagine what you're going through. Good luck, hope this story turns out well soon!
 
echo, you are an extremely gifted storyteller, and i look forward to keeping up with how things have turned out. i read all of this and i was rapt.
 
Mr. Blonde said:
what exactly is this condition you have that causes all the pain?
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He already mentioned. Legally/for documentation purposes, it is classified as chronic peripheral neuropathy, although his case is more severe and affects a larger area of his body than the condition describes.
 
Very exciting story, so to say, though I'm sure there's nothing exciting about it to you. The part where with your OD and your little girl finding you was heartwrenching. I have a 3-year old so I can relate a little bit to how something like that feels, when you just want to protect your kids against the world.

Much respect to ya for being so outright with your doctors. It's a tough situation to be in, since they pretty much has all the leverage of being on the expert-side, so good on you to take control over your own situation!

Looking forward to the update.
 
I am humbled by your praise, guys. Thanks so much for the kind words. Posting this is cathartic enough, but to get this kind of support from the gaf community means a lot. I know I promised to get p2 out a lot sooner, so I thought I'd post an update.

I'm about halfway through with the writing, but my energy has just been diverted elsewhere. Some of that is normal stuff...holiday business and bad attacks (which can have an impact on my ability to concentrate). But there's another cool reason this has been delayed that I wanted to share with you guys...

Shortly after I posted pt 1, I was pm'd by a gaffer (who will remain anonymous). His spouse is going through a lot of the same stuff I went through my first couple of years. Since he first contacted me a couple weeks ago we - his spouse and I - have exchanged a MASSIVE volume of mail. It feels good to know that I can refer back to my own experiences to hopefully make it a little easier for someone else, ya know? It has led to some delays here, as the hours and hours I've spent corresponding with her have been eating up my writing time. Feels like my priorities are in the right place though, and I think you'll all agree.

I know everyone is going to see my name in their subs and say "yay part 2!" So...sorry for that as well. Will you accept a teaser...? A teaser...geez...this is going to my head. :P

---excerpt below----

We’ll skip the long, dull process of finding a new primary care doctor and go straight to Dr. B’s door. Doctor B is a student of the old school; not quite old enough to be edging retirement, but experienced enough to see through a lot of the bullshit the younger doctors tend to miss. Cantankerous, castigating, 80’s mustache, with a tendency to deviate into conversations on politics, sex, “this idiotic generation,” etc. mid-appointment without warning, only to grumble later about running late (or bite my head off when I bring up an unexpected question as he gathers his things). Now you know everything you need to know about Dr. B. We went through the typical beginnings I described in my last post – until it came time for his messiah complex. At this point he had fiddled with my meds a bit, he had a specialist he wanted me to see, but that was it. He came to understand my condition fairly quickly, he supported my decision to use medical marijuana, and he had no “master plan” bullshit. Here was the first guy I had seen in five years who told me, point blank, that he couldn’t fix me – that my condition was for life, barring some miraculous invention down the road. We were never going to hit 100% recovery. I can’t tell you what a relief it was to have a doctor level with me like that. This was the guy.

This was also the guy who helped educate me a bit on opiates, and the different levels of addiction. He was seriously disturbed by the rapidity with which Dr. Stacey had amped up my narcotics. “You have 20% relief with vicodin…you have 20% relief with Percocet, 20% with hydromorphone, 20% with oxycontin, 20% with morphine…the answer is not to go to fentanyl. The answer is to go back to vicodin.” I’ll never forget what he told me, reviewing my drug history: “these are drugs for dying people, Matt. This is how you would treat someone who is dying.” He had never seen someone with a non-malignant, chronic condition move from vicodin to fentanyl so quickly, especially such a high dose of fentanyl. While he was hesitant to criticize Dr. Stacey directly, it was clear he felt the end result should have been obvious to any professional, given the speed with which potency had been amped up. Eventually, he would prescribe a much milder regiment of methadone and vicodin, and the dose has not changed all that much since he first started me on it.

Dr. B didn’t have much experience with spinal cord stimulators, so he sent me off to a neurologist at nearby Meridian Park Hospital. Dr. S is a young doctor, highly intelligent, funny, and specializes in stims. She felt it was fairly obvious that the device wasn’t functioning properly, and she had some thoughts on why that might be, but she wasn’t ready to draw any conclusions just yet. She had several ideas on how to proceed...

dun dun dun! I'll be back with the whole post soon. :D
 
I also just discovered this thread. That's some really great news echoshifting, especially with what you've been through. The kind of doctor you described in your last post is basically the kind of guy I'd want looking after me.
 
It's good to hear things are looking a bit better and also that you've got the chance to share your experiences with -and help- people in similar circumstances.

Thanks for the update, enjoy your holidays! :D
 
this was a great update on the thing in there. So well written too. I like. I am actually fascinated by this bad doctor who treated you unfairly and prescribed wrong way the drugs. I don't know whether I am getting typical television feelings but to me that guy sounded like he makes people die, like a serial killer or for the insurance company.

I know I might be thinking too far out of reach, but I find it really hard to believe that there are doctors with that kind of bullshit with mission to help and save people.
 
I can completely sympathize with these kinds of back problems.

I got hurt at work about 3 years ago, and while my condition is not nearly as severe as yours is, I'm still in pain all the time (not working) and simply DOING ANYTHING makes it worse.

Been through a number of doctors before workmans comp gave up and threw money at me in a settlement.

Going to see a new doctor at an NYU spine center in a few weeks, super nervous.
 
raphier said:
this was a great update on the thing in there. So well written too. I like. I am actually fascinated by this bad doctor who treated you unfairly and prescribed wrong way the drugs. I don't know whether I am getting typical television feelings but to me that guy sounded like he makes people die, like a serial killer or for the insurance company.

I know I might be thinking too far out of reach, but I find it really hard to believe that there are doctors with that kind of bullshit with mission to help and save people.
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In the interest of fairness to Dr. Stacey, he is the head of the Pain Management program at OHSU. He sees more patients than anyone else in that office and he has a tremendous burden of responsibility most doctors don't have to deal with. So while I don't think he is a serial killer, I do believe that his position has led to a level of detachment that does not serve his patients well. I don't think it's all his fault, but rather that the system in place at OHSU has led to his promotion to a position he shouldn't necessarily have...or, at best, a position which should really be filled by two people. It's obvious just walking into the office that the guy is terribly overworked, and that's problem number one. Individual pain patients require a lot of attention and individual care which Dr. Stacey's patients do not receive.

Here's how an appt. with Dr. Stacey works - when you get back into the "little white room," you wait for a bit, you talk to a nurse just as you always would, and you proceed to wait for the doctor. Pretty normal, right? However, because this is a teaching hospital and Dr. Stacey is the head of the program, he always has one or two interns working under him. So, instead of seeing Dr. Stacey next, you see the intern. This is almost always a different person, and they're students, so I would then spend fifteen minutes explaining every minute detail of my condition to the new person. Then the intern tracks down Dr. Stacey and interprets. Dr. Stacey utilizes the communication of the nurse and the intern - not the patient - to assess what's going on and how to proceed (despite the fact that the intern has little or no prior experience with the patient). When the good doctor finally bursts into the room, he's in a big hurry, he's already heard everything and he's half an hour behind so he's ready to move on to the next patient before you even open your mouth. Every...damn...time. You have to fight just to get the bare minimum fifteen minutes you paid for.

I can't know what was going through Dr. Stacey's head for sure but it seemed to me that, when he heard about my OD, he panicked. He went from increasing my fentanyl because my device wasn't living up to expectations to completely stripping me of any narcotics in less than a month, and offered nothing to fill the void. That's some hefty cognitive dissonance, and he's a bright guy so there's something else going on. It seemed to me that he realized he could get in trouble for the manner in which he had been treating me with narcotics, did a risk assessment, and that was that. He claimed that any doctor would get in trouble for putting a patient back on narcotics in my circumstances...at the time I believed him, but now I know this to be false. I can sort of get where he was coming from in a "greater good" sense: if Dr. Stacey is treating a lot of patients with a level of narcotic painkillers that might raise eyebrows (or cost him his practice), he has no choice but to clip the problem patients.

I get that. What's upsetting to me are the incidents in which he clearly intentionally deceived me, treatment methodologies which I now feel put my life at risk, and his decision to completely cut off my opiates rather than attempt to work out a system with my wife to distribute them in a safe fashion, or at the very least safely titrate me off of them (opiate withdrawal ain't fun for normal people, let alone freaks like me). He treated me like a junkie, not a desperate bastard in pain. And that, to me, says a lot about his understanding of chronic pain, or complete lack thereof.

I think when it comes to a big teaching hospital like OHSU, people who are good teachers/managers end up in lofty positions regardless of their merits as doctors. It was overwhelmingly obvious by the time I left Dr. Stacey that he had no understanding of my condition at all, and that he thought he'd be better off if I left. I honestly believe that by the time I told him about my marijuana use, he was trying to drive me away. This isn't provable by any means, but the problems with my stim, as you'll see in my next update, were glaringly obvious to other doctors...and he offered no further solutions beyond the implant after I OD'd on Fentanyl. I'll let you draw your own conclusions.

I feel like I started out trying to defend the guy, reading back over this it certainly doesn't come across that way. :lol
 
well, that's not making me feel much better about spending $450 out of pocket to go to NYU :lol

but since mine was previously workmans comp case (which will be reopened if they make a diagnosis), no doctor in the area will even see me
 
Yeah, man that drives me nuts. It's always the first question on their lips: was this a work-related injury? What the fuck do you care? What the hell does that have to do with anything? Well, it basically means that if it is, they're about to tell you to piss off. I am lucky in that nobody really knows how mine started, but even then they will eye me warily and ask if maybe...hypothetically speaking...it *might* have been on-the-job? Sigh.

Anyway, I wish you the best of luck and if you ever want to talk about it shoot me a PM. Perhaps I'll start a little club.
 
Yeah, I once made the mistake of absent-mindedly saying that I hurt myself on the job for a fairly minor injury (needed stitches, but that was about it). It was my own damn fault, but they asked and I just stupidly told the truth without even thinking about it. So much paperwork and hassle because of that.
 
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