echoshifting
Banned
I won't know the exact cost for quite awhile. The trial was $6000 but I doubt that includes anesthesiology, doctor's fees, etc. The permanent unit procedure is going to be a bit more than that.
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Surgery-age: in two weeks I will be a cyborg
- Thread starter echoshifting
- Start date
- Status
Lord Error
Insane For Sony
It was amazing and fascinating reading that. Really glad it worked out so well, and thanks for keeping us updated!
echoshifting
Banned
deadbeef said:
Bolded means nothing to me, sorry.
My only interface is the short-range remote I described. I will try to get a pic up eventually. It is pretty cool but so short range I will have to hold it up to my side when I make changes. The generator inside my back has an antenna to receive the signal.
Dahellisdat
Member
Have them graft you a pair of these while you're at it.
echoshifting
Banned
Tomorrow's the big day.
Last night I dreamed they cut me open all the way down my back, side to side and diagonally, left me on the table for five and a half hours and then decided they needed to reschedule.
Sucks I have to be awake for most of this.
AHHHHHHHHHHHHHHHHH
Last night I dreamed they cut me open all the way down my back, side to side and diagonally, left me on the table for five and a half hours and then decided they needed to reschedule.
Sucks I have to be awake for most of this.
echoshifting
Banned
So, it's been about three weeks since the surgery. I'm not sure if there is still interest in all this floating around on gaf, but I thought I would post an update anyway. This is a very long post.
The surgery itself was not as bad I was expecting. It is certainly no fun to be wide awake and completely aware as someone is slicing open your back and tying electrodes to your vertebra. I was told I wouldn't remember anything or what I remembered would make no sense, but I recall most of the procedure pretty clearly. You have to be awake while they are putting in the leads so they can be sure to get them in the right place, and then they knock you out while they put in the generator.
The incisions themselves are not so bad, and the way they healed was surprisingly high-tech. Rather than stitch them together, they used a newish medical adhesive that would keep the wounds closed. So, I didn't have to worry about changing bandages at all, I didn't have to get any sutures removed, and as a bonus the adhesive protected the incisions and made them a lot less painful. They bled a little bit and one got a little infected, but other than that they've healed fine. I'm not going to embed the image because I don't want to risk grossing anybody out but you can click here if you're curious.
The first week went well, but I mostly spent it on the couch recuperating so it wasn't a terribly good measure of success. The plan was to use the initial programming in the remote for a few weeks and then come back in and meet with a Medtronic rep for some "fine tuning." As I started to feel better and move around more, I found that the stimulator, while extremely helpful, doesn't quite hit my entire painful area (which is really quite large), and I would just hit a ceiling where the areas it does not hit were too painful or even the areas it is helpful for would become too painful. I would then pop a couple of painkillers I was given for incision pain so I could keep going or recuperate a bit. I've been on these sorts of painkillers for years and I don't even think too much about using them; it's just become a part of my life. I switched to long-acting painkillers awhile ago and haven't really been using the short-acting kind. I found that the combination of long-acting painkillers, the stimulator, and the short-acting painkillers was perfect. The long-acting painkillers helped keep the pain at a relatively low level while I was asleep or inactive, the stimulator helped me to really get off the couch and start doing things, and the short-acting painkillers were a lifeline of sorts so if things got out of control I wouldn't be writhing in pain. So, those first few days after I recovered from the surgery itself were pretty fantastic.
Unfortunately, when I went back in to get my incisions checked (I was in there often since, as I said, I had a minor infection, and staph infection concerns run high these days), I told the resident nurse that I was using the short-acting painkillers for my normal pain rather than the incision pain. The incisions were uncomfortable but next to my normal pain, it was pretty insignificant. She kinda freaked out (unreasonably, in my opinion), and insisted that I meet with the medtronic rep to make sure the stimulator was functioning properly and operating at maximum effectiveness. So, I met with him and my normal doctor (the same guy who performed the surgery) a few days later, and things went downhill from there.
So, that Thursday - I guess it was the 2nd - I met with my doctor and he insisted I drop the short-acting painkillers and try to see what the stimulator could do on its own, and the medtronic rep, we'll call him Bob, completely obliterated my stimulator's effectiveness. That was truly an awful experience. It's hard to describe what happened; I've struggled to find the words even with my wife. He would run a strong program sensation up and down my spine over and over. The way they are supposed to do that is to try a program in a particular spot, and if it doesn't work, reduce the power to 0 and try again from another spot. Instead of doing that he would keep the program at the same strength as he ran it up and down my spine. In some spots that strength would be fine, and in others, it would be far too strong, and essentially felt like being electrocuted. This went on for well over half an hour. He was worried that one of the leads had become damaged or been installed too low (he asked me over and over if he had done any bending, twisting or lifting that could have damaged them), and he wrote a bunch of new programs that didn't really use it, even though that lead was necessary for good programs that helped with my pain.
He seemed rushed to finish, and even when I told him that a particular combination of sensation and location was effective, he would brush that away, saying that he would give me the ability to create my own combinations when we were finished. The problem with this was that the control he gave me was way too complicated. I am not very tech-savvy, and all I ended up doing was making programs worse. It just didn't make a lot of sense to me to give a new user that level of customization, especially when there isn't any way to undo your mistakes; once you make a change you are stuck with it. The option he gave me to create my own combinations was too difficult to use, and I ended up ignoring programs in the remote that were associated with it. As you used that option, the charge in the generator would continue to build until you pressed a certain combination of buttons to make it stop. The amount of current that I can tolerate is very low compared to the maximum potential current, so I wasn't really comfortable making those kinds of changes on my own. Bob told me that he had never given that level of control to a patient before, and I can see why. He said he put it on there because I was a "young guy" and he thought I could figure it out, but honestly I think he just didn't want to spend the time to build good programs himself.
That experience really changed my perception of the stimulator and my relationship with it. It wasn't just a miracle cure anymore; it had very real limits, not to mention that there was now a voice in my head reminding me that there was a big chunk of metal fused to my spine that wasn't there before. I went from having it on all the time to only using it occasionally, and there was only one program I was comfortable using. I started having nightmares about the stimulator suddenly turning on at maximum strength and shocking me until I died, or the generator catching fire inside me while the leads kept me paralyzed on the floor, unable to act. I became depressed; I couldn't believe that things could go from being so good to being this bad so easily.
I was supposed to see my doctor two weeks after that, and have my programs adjusted again in a month, but I muscled my way in to see them both last Friday. I insisted on meeting with a different medtronic rep and went well out of my way to ensure I would not be meeting with Bob again. I had had good success during the trial with programs from another rep, we'll call him Jim (this is the guy who created the "sex legs" program, for those who have been following along), and he agreed to come out and try to get things working again. I wasn't expecting to see my doctor, just one of the residents, but he ended up popping in to try to get me back on my feet. They have an operating room in that office with a pretty fancy x-ray machine that didn't happen to be occupied when I was there, so we ended up doing an "off the record" x-ray to make sure the leads weren't damaged (they were all fine). Jim was also able to use that information - seeing exactly where they were - to improve the programming on the remote. He took off all of the customization options I didn't need, and started from scratch. We were able to build a batch of programs that work fine - still not perfect, but a vast improvement over the previous week.
Things have been a lot better since then; I've been gradually getting back into my life and just trying to take it slow. I'm not using the short-acting painkillers anymore, although I'm keeping them on the table for down the road. I see my doctor again in a month and I don't think he'd have a problem with me using them if I truly need them. I think he'd prefer it (heck, so would I), if I not only avoided them but also scrapped Fentanyl and even got off pregabalin, but the fact is I think I am going to need all of these things working in unison to resume a normal life. The stimulator has an important place in my treatment but it has very real limits. It doesn't cover the whole pain area and my pain often rises to a certain level where the stimulator simply doesn't cut it anymore.
So, overall, I'm very glad I got the stimulator and relieved that this inevitable chapter in my treatment is coming to a close. I'm working to integrate it into my normal life and find the best ways to use it for every kind of activity. I'm starting to take care of my daughter more on my own, and I hope to return to school and work by January. It's not a perfect solution, and it has the potential to be very bad, but it helps.
tl;dr version: surgery went fine, stimulator is helping a lot. Not perfect but things look good.
The surgery itself was not as bad I was expecting. It is certainly no fun to be wide awake and completely aware as someone is slicing open your back and tying electrodes to your vertebra. I was told I wouldn't remember anything or what I remembered would make no sense, but I recall most of the procedure pretty clearly. You have to be awake while they are putting in the leads so they can be sure to get them in the right place, and then they knock you out while they put in the generator.
The incisions themselves are not so bad, and the way they healed was surprisingly high-tech. Rather than stitch them together, they used a newish medical adhesive that would keep the wounds closed. So, I didn't have to worry about changing bandages at all, I didn't have to get any sutures removed, and as a bonus the adhesive protected the incisions and made them a lot less painful. They bled a little bit and one got a little infected, but other than that they've healed fine. I'm not going to embed the image because I don't want to risk grossing anybody out but you can click here if you're curious.
The first week went well, but I mostly spent it on the couch recuperating so it wasn't a terribly good measure of success. The plan was to use the initial programming in the remote for a few weeks and then come back in and meet with a Medtronic rep for some "fine tuning." As I started to feel better and move around more, I found that the stimulator, while extremely helpful, doesn't quite hit my entire painful area (which is really quite large), and I would just hit a ceiling where the areas it does not hit were too painful or even the areas it is helpful for would become too painful. I would then pop a couple of painkillers I was given for incision pain so I could keep going or recuperate a bit. I've been on these sorts of painkillers for years and I don't even think too much about using them; it's just become a part of my life. I switched to long-acting painkillers awhile ago and haven't really been using the short-acting kind. I found that the combination of long-acting painkillers, the stimulator, and the short-acting painkillers was perfect. The long-acting painkillers helped keep the pain at a relatively low level while I was asleep or inactive, the stimulator helped me to really get off the couch and start doing things, and the short-acting painkillers were a lifeline of sorts so if things got out of control I wouldn't be writhing in pain. So, those first few days after I recovered from the surgery itself were pretty fantastic.
Unfortunately, when I went back in to get my incisions checked (I was in there often since, as I said, I had a minor infection, and staph infection concerns run high these days), I told the resident nurse that I was using the short-acting painkillers for my normal pain rather than the incision pain. The incisions were uncomfortable but next to my normal pain, it was pretty insignificant. She kinda freaked out (unreasonably, in my opinion), and insisted that I meet with the medtronic rep to make sure the stimulator was functioning properly and operating at maximum effectiveness. So, I met with him and my normal doctor (the same guy who performed the surgery) a few days later, and things went downhill from there.
So, that Thursday - I guess it was the 2nd - I met with my doctor and he insisted I drop the short-acting painkillers and try to see what the stimulator could do on its own, and the medtronic rep, we'll call him Bob, completely obliterated my stimulator's effectiveness. That was truly an awful experience. It's hard to describe what happened; I've struggled to find the words even with my wife. He would run a strong program sensation up and down my spine over and over. The way they are supposed to do that is to try a program in a particular spot, and if it doesn't work, reduce the power to 0 and try again from another spot. Instead of doing that he would keep the program at the same strength as he ran it up and down my spine. In some spots that strength would be fine, and in others, it would be far too strong, and essentially felt like being electrocuted. This went on for well over half an hour. He was worried that one of the leads had become damaged or been installed too low (he asked me over and over if he had done any bending, twisting or lifting that could have damaged them), and he wrote a bunch of new programs that didn't really use it, even though that lead was necessary for good programs that helped with my pain.
He seemed rushed to finish, and even when I told him that a particular combination of sensation and location was effective, he would brush that away, saying that he would give me the ability to create my own combinations when we were finished. The problem with this was that the control he gave me was way too complicated. I am not very tech-savvy, and all I ended up doing was making programs worse. It just didn't make a lot of sense to me to give a new user that level of customization, especially when there isn't any way to undo your mistakes; once you make a change you are stuck with it. The option he gave me to create my own combinations was too difficult to use, and I ended up ignoring programs in the remote that were associated with it. As you used that option, the charge in the generator would continue to build until you pressed a certain combination of buttons to make it stop. The amount of current that I can tolerate is very low compared to the maximum potential current, so I wasn't really comfortable making those kinds of changes on my own. Bob told me that he had never given that level of control to a patient before, and I can see why. He said he put it on there because I was a "young guy" and he thought I could figure it out, but honestly I think he just didn't want to spend the time to build good programs himself.
That experience really changed my perception of the stimulator and my relationship with it. It wasn't just a miracle cure anymore; it had very real limits, not to mention that there was now a voice in my head reminding me that there was a big chunk of metal fused to my spine that wasn't there before. I went from having it on all the time to only using it occasionally, and there was only one program I was comfortable using. I started having nightmares about the stimulator suddenly turning on at maximum strength and shocking me until I died, or the generator catching fire inside me while the leads kept me paralyzed on the floor, unable to act. I became depressed; I couldn't believe that things could go from being so good to being this bad so easily.
I was supposed to see my doctor two weeks after that, and have my programs adjusted again in a month, but I muscled my way in to see them both last Friday. I insisted on meeting with a different medtronic rep and went well out of my way to ensure I would not be meeting with Bob again. I had had good success during the trial with programs from another rep, we'll call him Jim (this is the guy who created the "sex legs" program, for those who have been following along), and he agreed to come out and try to get things working again. I wasn't expecting to see my doctor, just one of the residents, but he ended up popping in to try to get me back on my feet. They have an operating room in that office with a pretty fancy x-ray machine that didn't happen to be occupied when I was there, so we ended up doing an "off the record" x-ray to make sure the leads weren't damaged (they were all fine). Jim was also able to use that information - seeing exactly where they were - to improve the programming on the remote. He took off all of the customization options I didn't need, and started from scratch. We were able to build a batch of programs that work fine - still not perfect, but a vast improvement over the previous week.
Things have been a lot better since then; I've been gradually getting back into my life and just trying to take it slow. I'm not using the short-acting painkillers anymore, although I'm keeping them on the table for down the road. I see my doctor again in a month and I don't think he'd have a problem with me using them if I truly need them. I think he'd prefer it (heck, so would I), if I not only avoided them but also scrapped Fentanyl and even got off pregabalin, but the fact is I think I am going to need all of these things working in unison to resume a normal life. The stimulator has an important place in my treatment but it has very real limits. It doesn't cover the whole pain area and my pain often rises to a certain level where the stimulator simply doesn't cut it anymore.
So, overall, I'm very glad I got the stimulator and relieved that this inevitable chapter in my treatment is coming to a close. I'm working to integrate it into my normal life and find the best ways to use it for every kind of activity. I'm starting to take care of my daughter more on my own, and I hope to return to school and work by January. It's not a perfect solution, and it has the potential to be very bad, but it helps.
tl;dr version: surgery went fine, stimulator is helping a lot. Not perfect but things look good.
lastendconductor
Put your snobby liquids into my mouth!
Holy shit, you scared me for a while there. I'm glad you feel better now.
echoshifting
Banned
Ventrue said:
Not at all, 28. I've been dealing with this for about three and a half years.
valparaiso
I had an Al Sharpton friend...Once! Well not a friend really, but we talked a few times. Well one time. Well I yelled out my window "GET OFF MY LAWN!"
awesome attitude, dude. and glad to hear it went ok!
WHOAguitarninja
Member
First time I've seen this thread, but I read almost the whole thing. Really interesting procedure and I'm glad to hear you're doing better.
echoshifting
Banned
notsol337 said:
ha ha, perhaps it is time to finally retire my old Bear av and find a T-100 or Robocop gif or something.
hint hint
Thanks for the well wishes guys.
BeautifulMemory
Member
OP's last activity was last night, so come tell us how you are now!
BlackGoku03
Member
Very interested to know how he's doing.
echoshifting
Banned
:lol I hardly ever even look at Off-Topic anymore and I happened to glance at it tonight for Walking Dead finale opinions and had to do a double-take..."wait a minute...that's my thread!"
It is late and I am tired, but I will provide an update for the curious in the very near future. There is, in fact, much to tell (suspense!). Thanks for checkin' in on me!
It is late and I am tired, but I will provide an update for the curious in the very near future. There is, in fact, much to tell (suspense!).
Thanks for checkin' in on me!BlackGoku03
Member
I was going to PM you because I really was that curious! :lolechoshifting said::lol I hardly ever even look at Off-Topic anymore and I happened to glance at it tonight for Walking Dead finale opinions and had to do a double-take..."wait a minute...that's my thread!"
It is late and I am tired, but I will provide an update for the curious in the very near future. There is, in fact, much to tell (suspense!).
SouthernDragon
Member
Have you turned into the local superhero/villain yet?
Bitmap Frogs
Mr. Community
Hey dude! Hope things are going well for ya.
That's hell you've bee going through.
Let us know how it's gone as of late =)
That's hell you've bee going through.
Let us know how it's gone as of late =)
Whew man, that's rough. I'm glad things are beginning to look up a little bit though despite you realizing that the stimulator may not be the end all be all. I'm sorry to hear that it hasn't completely fixed your problem and I know this is going to be very cliche but... just try to focus on what the positives are in your life. You are alive and you have a wife that probably cares a lot about you (or was it a girlfriend, I forgot).
It sucks when you're young and you learn that you having a chronic illness that you may live with for the rest of your life. I was diagnosed with Rheumatoid Arthritis when I was 21 (I'm now 23). Luckily I've been put on a regimen that has been working very well but the two years it took to get diagnosed (doctors couldn't figure it out) were probably some of the worst moments of my life. I probably spent the last 3 months before I had surgery on my feet with my feet elevated all night whilst downing 12-14 ibuprofen a day. My feet were practically rigid and the tendons and tissues had gotten so inflamed that it felt like walking on glass every step I took. Ugh, I don't even like to think about it.
Things are much better for me now and things seem to be on the up and up for you. Despite your frustration with the stimulator, at least it has made things somewhat better. I know it's probably been a hassle to get everything in order but perhaps as your consultations continue and maybe better programs are built, things will get better. They certainly won't go back to how bad they were pre-surgery I presume?
Best wishes and good luck!
It sucks when you're young and you learn that you having a chronic illness that you may live with for the rest of your life. I was diagnosed with Rheumatoid Arthritis when I was 21 (I'm now 23). Luckily I've been put on a regimen that has been working very well but the two years it took to get diagnosed (doctors couldn't figure it out) were probably some of the worst moments of my life. I probably spent the last 3 months before I had surgery on my feet with my feet elevated all night whilst downing 12-14 ibuprofen a day. My feet were practically rigid and the tendons and tissues had gotten so inflamed that it felt like walking on glass every step I took. Ugh, I don't even like to think about it.
Things are much better for me now and things seem to be on the up and up for you. Despite your frustration with the stimulator, at least it has made things somewhat better. I know it's probably been a hassle to get everything in order but perhaps as your consultations continue and maybe better programs are built, things will get better. They certainly won't go back to how bad they were pre-surgery I presume?
Best wishes and good luck!
echoshifting said::lol I hardly ever even look at Off-Topic anymore and I happened to glance at it tonight for Walking Dead finale opinions and had to do a double-take..."wait a minute...that's my thread!"
It is late and I am tired, but I will provide an update for the curious in the very near future. There is, in fact, much to tell (suspense!).
oh, the suspense!
echoshifting
Banned
Part 1 of 2
All right, my last update was October 08. This post assumes youve read that one (theres even foreshadowing). #109.
Anyway. So as Ive mentioned, there has been quite a lot of change since I wrote that. This is the *setup* to the post about all my cool new tech. In other words, theres more to come.
As I noted in my last update, I was not nearly as happy with the permanent unit as I was with the test. Everything just felt a little off. I never got past that initial desire to keep to one program because the others were too difficult to use without inflicting further pain. Each of these programs seemed to require sitting at a very precise angle to get the damn thing to work at all, and if I moved even the tiniest fraction of a degree, it would almost invariably send a massive jolt through my entire body. It didnt take me long to figure out that something had to be wrong but it took a hell of a long time to convince everyone else. Dr. Stacey, my pain doctor at that time (and the guy who put in the implant) refused to believe anything was wrong. We did x-ray after x-ray and everything LOOKS fine, so it must be working fine, right? Right
Heres something that has always bothered me, though. We had agreed on a very specific place to implant the leads via the test run. However, during surgery Dr. Stacey felt I was reacting to painful sensation more in another area. I was awake during the surgery but I mean not really, ya know? Im not sure it counts if they give you so many drugs you cant remember how many fingers you have. It has always bothered me that he did this, despite the fact that there really wasnt much of anything that could be done once it was in there. And I think that alteration *may* be what caused all of my problems with the device.
That one program still helped, though it had its own problems. For instance, it didnt hit the whole area it was supposed to affect and for another thing, its difficult to have one program running all the time. Its basically impossible, at least in my particular case, to restrict the sensation to the painful area; it will often run down my legs and make it very difficult to walk if I have it set too high. Not to mention, the muscles that are affected get tired of it, so Id have to turn it off for a couple days a week (I would have preferred to use it every day, practically all the time, as I do now).
This was all extremely hard for my wife and I to take. We gradually became more and more disappointed with the initial promise of the device. She agreed it was probably malfunctioning but it was a hell of a lot harder to convince that pain doc or the folks at Medtronic, each assuming that I either didnt have the right programs yet, or I wasnt trying hard enough to make them work. This, despite my jumping three feet up and yelping any time the experts were setting up a new program. They out-and-out *refused* to believe that anything could be wrong especially Dr. Stacey. They took several x-rays, but were unable to see anything wrong. Eventually I gave up.
At this point I started abusing my fentanyl patches not just using more at once than I should, but actually extracting the gel to smoke. In my defense, at this point we really felt like wed tried everything; even my wife didnt object too strongly to this behavior. I swore profusely that I knew what I was doing, and frankly smoking those little globs of fentanyl cleared my pain up better than ever, before or since. I cant even express how awesome it feels to turn at the waist without pain after years of not being able to do so. I quickly became addicted to the process, not so much for the high as for the pain relief. There is actual terminology for this among pain doctors, though I cant remember what it is.
You can probably see where this is going.
On a particularly bad night in November, I squeezed a little more gel out of a pack than I was used to, disregarding the fact that even the tiniest drop of fentanyl contains a massive amount of opiate; it is 80 times stronger than morphine. I knew, looking at it, that it was more than I usually did, but I didnt care. I wanted to be done with that particular attack.
Fifteen minutes later, I woke up on the floor of my living room, surrounded by the large silhouettes of six large men, who turned out to be EMTs. I could barely see, and my arm was drenched with blood. I was vaguely aware of my daughter screaming, somewhere. I had no idea what happened, and frankly the story is so horrible that I am reluctant to re-tell it. My daughter, Mia (at the time, a year and a half old) had been in the tub, and had wandered out in the living room ahead of me. My wife heard her saying my name, louder and louder, as she cleaned up the bath mess. She thought I was playing a game with her, but as the urgency in her voice grew, she knew something was wrong. She found me slumped over my chair, my little fentanyl bong still in my lap, blue from head to toe.
Dont play with fentayl kids. It WILL kill you. The guy who taught me how to do it died mere weeks after my own overdose. Unfortunately for him, he lived alone.
I insisted I was fine (theres a shot they can give you that counteracts all opiates), but THEY insisted I go to the ER, and I didnt appear to have any say in the matter. They wheeled me outside, my wife clinging to my still-naked daughter, both in tears. Our driveway was filled with flashing lights; the fire department had arrived first. I tried to keep a brave face on for my family as they wheeled me away, but completely collapsed in the ambulance. I could not believe what I had put my family through. I will carry the memory of that night for the rest of my life. I take complete responsibility.
The next day, I called my pain docs office to let them know what had happened. I knew they would find out eventually, and I felt it best that I come clean before they heard it elsewhere. They insisted I come in immediately to discuss it. The situation was pretty grim: even though they nearly took my life, I still needed some sort of painkiller. Its not as though my pain had gone away overnight! Dr. Stacey disagreed; recall that I never convinced him that my stimulator was malfunctioning. He reminded me that we had implanted the stim with the intent of getting off narcotic painkillers in the first place, so we might as well stop their use immediately. In an instant, I went from .75/hr fentanyl patches and 180 short-acting percocets per month to nothing whatsoever. Suffice to say, the withdrawal was unpleasant.
I believe that Dr. Staceys decision here was based entirely on protecting his practice. In many cases, pain patients who abuse drugs (80% of us do to some degree) can be taught to use them properly; switching to a different long-acting painkiller and allowing my wife to manage them or even requiring that I switch to a weekly or daily prescription are great alternatives many pain doctors use frequently. Despite the fact that I did not fit the profile of a true addict (something I had researched extensively before the appointment), I was completely stripped of the only painkilling tool that was truly effective. I did not believe Dr. Staceys reasons were just, and the fact that he still insisted that my stim was working fine and was therefore a suitable replacement for such a massive quantity of powerful painkillers was infuriating. Our relationship began to fracture. Something had to change, and fast.
I never really smoked pot as a kid twice, and on one of those occasions I didnt even inhale properly. While Oregon has a great medical marijuana program, there are no dispensaries, which can create problems for those who go into the program in a state of complete ignorance, as I did. Lucky for me that a friend of a friend knew a grower, someone who would be willing to grow for me if I could get him a card to keep it legal. In the meantime, I had a connection who I could buy from while I waited and I did.
I knew so little about marijuana that my friend had to teach me how to pack a bowl and how to use a glass pipe. I know this, though: it rocks for pain. It is just as powerful as fentanyl, just a different sort of sensation. Its superiority lies in the fact that you cant die from an overdose! I could take as much painkiller as I needed to whenever I wanted to. It is the perfect drug for chronic pain patients. It was, potentially, a dream come true.
I educated myself as much as I could, reading everything I could find about it, and I cannot believe how much blatantly false information about pot the government is putting out there. I went from being mostly apathetic towards marijuana to a huge supporter of not just medical marijuana, but decriminalization as well. It isnt nearly as bad as alcohol (I can attest to this, as I spent much of the first year of pain guzzling as much liquor as I could afford), and it presents virtually no risk to the health of the occasional smoker. It is about time the federal government approved medical marijuana across the board, at the very least; not everyone is quite as lucky as I am.
I started using pot as a painkiller the day after Dr. Stacey completely revoked my opiate license. Initially, I used it because I knew I was in for one hell of a withdrawal, but as the week went on it became clear that I now had a safer, equally potent painkiller. I started the long process of getting a card, and contacted Mothers Against Misuse & Abuse (MAMA), a pro-medical marijuana program complete with doctors willing to sign off on cards. It was months before I actually got an appointment; in the meantime I continued to buy. Once all of my medical records had been gathered, MAMA granted me an appointment again, months away. I dont think anything teaches you patience quite as well as chronic pain does; your condition is not terminal. Sometimes, it feels like being on the bottom of a massive totem pole.
It is a poorly kept secret that medical marijuana cards are usually easy to acquire, even if you dont have a legitimate condition. So, you can imagine how easy it was in my case, given the six-inch thick file I came in with. He took one look at that thing, one look at my best pain face (the long wait to see him hadnt exactly been comfortable), and immediately signed off on my card. We exchanged few words.
At this time, Dr. Stacey had become my primary care doctor, despite the fact that he was a specialist. I had recently parted ways with my normal doctor, and I was reluctant to pursue another, as it can take weeks to convince him/her that my condition is authentic, which is usually followed by brief, ego-driven passion: These other doctors may not have been able to fix it, but I can! Trust me, Im the one you were looking for. This is followed by a period of odd resentment and then we can finally start building a good relationship. It takes a big chunk of my daily energy budget to do something like that, so I tend to put them off for as long as possible.
As he was now handling all of my prescriptions, I thought Dr. Stacey should know that I was a medical marijuana user. He became visibly upset; he still felt the stim should be sufficient for pain, and he didnt like how cannabis interacts with people who have painful conditions like mine. He warned me that I would completely lose all motivation to do anything, that I would not be able to get better while I was using pot (this, despite having gone through about four physical therapists who had let me go, typically after the first session, fearing they were doing more harm than good). No, he would much rather I continue to spend days at a time in a horizontal position while he continued not offering any solutions beyond willing the stimulator to start working properly.
I was furious. Here was the man who had not only ramped me up from vicodin to fentanyl in the space of less than a year, something I now know is incredibly dangerous and stupid (more on that in my next post). Here was the man who had installed my stimulator differently than what I had originally agreed to, while I was under heavy anesthesia , unable to stop him. Here was the man who still believed my stim was working perfectly fine, despite the fact that I was now practically begging for additional surgery to reposition the leads. He had taken away my primary pain relief, refused to fix my only other major pain relief, and now he was standing in front of me, bitching about my decision to turn to alternative medicine.
I wanted to punch him in the face but I didnt. I stood up, walked out, and never came back. I needed to put together a new team of doctors who would support my choices and maybe, hopefully, LISTEN to me, something Dr. Stacey did less and less as time went on. But I needed them fast; with Dr. Stacey out of the picture I had no one to turn to. More than anything, I needed a primary care doctor. I needed a damn good one, too.
NEXT: New doctors, new tech.
All right, my last update was October 08. This post assumes youve read that one (theres even foreshadowing). #109.
Anyway. So as Ive mentioned, there has been quite a lot of change since I wrote that. This is the *setup* to the post about all my cool new tech. In other words, theres more to come.
As I noted in my last update, I was not nearly as happy with the permanent unit as I was with the test. Everything just felt a little off. I never got past that initial desire to keep to one program because the others were too difficult to use without inflicting further pain. Each of these programs seemed to require sitting at a very precise angle to get the damn thing to work at all, and if I moved even the tiniest fraction of a degree, it would almost invariably send a massive jolt through my entire body. It didnt take me long to figure out that something had to be wrong but it took a hell of a long time to convince everyone else. Dr. Stacey, my pain doctor at that time (and the guy who put in the implant) refused to believe anything was wrong. We did x-ray after x-ray and everything LOOKS fine, so it must be working fine, right? Right
Heres something that has always bothered me, though. We had agreed on a very specific place to implant the leads via the test run. However, during surgery Dr. Stacey felt I was reacting to painful sensation more in another area. I was awake during the surgery but I mean not really, ya know? Im not sure it counts if they give you so many drugs you cant remember how many fingers you have. It has always bothered me that he did this, despite the fact that there really wasnt much of anything that could be done once it was in there. And I think that alteration *may* be what caused all of my problems with the device.
That one program still helped, though it had its own problems. For instance, it didnt hit the whole area it was supposed to affect and for another thing, its difficult to have one program running all the time. Its basically impossible, at least in my particular case, to restrict the sensation to the painful area; it will often run down my legs and make it very difficult to walk if I have it set too high. Not to mention, the muscles that are affected get tired of it, so Id have to turn it off for a couple days a week (I would have preferred to use it every day, practically all the time, as I do now).
This was all extremely hard for my wife and I to take. We gradually became more and more disappointed with the initial promise of the device. She agreed it was probably malfunctioning but it was a hell of a lot harder to convince that pain doc or the folks at Medtronic, each assuming that I either didnt have the right programs yet, or I wasnt trying hard enough to make them work. This, despite my jumping three feet up and yelping any time the experts were setting up a new program. They out-and-out *refused* to believe that anything could be wrong especially Dr. Stacey. They took several x-rays, but were unable to see anything wrong. Eventually I gave up.
At this point I started abusing my fentanyl patches not just using more at once than I should, but actually extracting the gel to smoke. In my defense, at this point we really felt like wed tried everything; even my wife didnt object too strongly to this behavior. I swore profusely that I knew what I was doing, and frankly smoking those little globs of fentanyl cleared my pain up better than ever, before or since. I cant even express how awesome it feels to turn at the waist without pain after years of not being able to do so. I quickly became addicted to the process, not so much for the high as for the pain relief. There is actual terminology for this among pain doctors, though I cant remember what it is.
You can probably see where this is going.
On a particularly bad night in November, I squeezed a little more gel out of a pack than I was used to, disregarding the fact that even the tiniest drop of fentanyl contains a massive amount of opiate; it is 80 times stronger than morphine. I knew, looking at it, that it was more than I usually did, but I didnt care. I wanted to be done with that particular attack.
Fifteen minutes later, I woke up on the floor of my living room, surrounded by the large silhouettes of six large men, who turned out to be EMTs. I could barely see, and my arm was drenched with blood. I was vaguely aware of my daughter screaming, somewhere. I had no idea what happened, and frankly the story is so horrible that I am reluctant to re-tell it. My daughter, Mia (at the time, a year and a half old) had been in the tub, and had wandered out in the living room ahead of me. My wife heard her saying my name, louder and louder, as she cleaned up the bath mess. She thought I was playing a game with her, but as the urgency in her voice grew, she knew something was wrong. She found me slumped over my chair, my little fentanyl bong still in my lap, blue from head to toe.
Dont play with fentayl kids. It WILL kill you. The guy who taught me how to do it died mere weeks after my own overdose. Unfortunately for him, he lived alone.
I insisted I was fine (theres a shot they can give you that counteracts all opiates), but THEY insisted I go to the ER, and I didnt appear to have any say in the matter. They wheeled me outside, my wife clinging to my still-naked daughter, both in tears. Our driveway was filled with flashing lights; the fire department had arrived first. I tried to keep a brave face on for my family as they wheeled me away, but completely collapsed in the ambulance. I could not believe what I had put my family through. I will carry the memory of that night for the rest of my life. I take complete responsibility.
The next day, I called my pain docs office to let them know what had happened. I knew they would find out eventually, and I felt it best that I come clean before they heard it elsewhere. They insisted I come in immediately to discuss it. The situation was pretty grim: even though they nearly took my life, I still needed some sort of painkiller. Its not as though my pain had gone away overnight! Dr. Stacey disagreed; recall that I never convinced him that my stimulator was malfunctioning. He reminded me that we had implanted the stim with the intent of getting off narcotic painkillers in the first place, so we might as well stop their use immediately. In an instant, I went from .75/hr fentanyl patches and 180 short-acting percocets per month to nothing whatsoever. Suffice to say, the withdrawal was unpleasant.
I believe that Dr. Staceys decision here was based entirely on protecting his practice. In many cases, pain patients who abuse drugs (80% of us do to some degree) can be taught to use them properly; switching to a different long-acting painkiller and allowing my wife to manage them or even requiring that I switch to a weekly or daily prescription are great alternatives many pain doctors use frequently. Despite the fact that I did not fit the profile of a true addict (something I had researched extensively before the appointment), I was completely stripped of the only painkilling tool that was truly effective. I did not believe Dr. Staceys reasons were just, and the fact that he still insisted that my stim was working fine and was therefore a suitable replacement for such a massive quantity of powerful painkillers was infuriating. Our relationship began to fracture. Something had to change, and fast.
I never really smoked pot as a kid twice, and on one of those occasions I didnt even inhale properly. While Oregon has a great medical marijuana program, there are no dispensaries, which can create problems for those who go into the program in a state of complete ignorance, as I did. Lucky for me that a friend of a friend knew a grower, someone who would be willing to grow for me if I could get him a card to keep it legal. In the meantime, I had a connection who I could buy from while I waited and I did.
I knew so little about marijuana that my friend had to teach me how to pack a bowl and how to use a glass pipe. I know this, though: it rocks for pain. It is just as powerful as fentanyl, just a different sort of sensation. Its superiority lies in the fact that you cant die from an overdose! I could take as much painkiller as I needed to whenever I wanted to. It is the perfect drug for chronic pain patients. It was, potentially, a dream come true.
I educated myself as much as I could, reading everything I could find about it, and I cannot believe how much blatantly false information about pot the government is putting out there. I went from being mostly apathetic towards marijuana to a huge supporter of not just medical marijuana, but decriminalization as well. It isnt nearly as bad as alcohol (I can attest to this, as I spent much of the first year of pain guzzling as much liquor as I could afford), and it presents virtually no risk to the health of the occasional smoker. It is about time the federal government approved medical marijuana across the board, at the very least; not everyone is quite as lucky as I am.
I started using pot as a painkiller the day after Dr. Stacey completely revoked my opiate license. Initially, I used it because I knew I was in for one hell of a withdrawal, but as the week went on it became clear that I now had a safer, equally potent painkiller. I started the long process of getting a card, and contacted Mothers Against Misuse & Abuse (MAMA), a pro-medical marijuana program complete with doctors willing to sign off on cards. It was months before I actually got an appointment; in the meantime I continued to buy. Once all of my medical records had been gathered, MAMA granted me an appointment again, months away. I dont think anything teaches you patience quite as well as chronic pain does; your condition is not terminal. Sometimes, it feels like being on the bottom of a massive totem pole.
It is a poorly kept secret that medical marijuana cards are usually easy to acquire, even if you dont have a legitimate condition. So, you can imagine how easy it was in my case, given the six-inch thick file I came in with. He took one look at that thing, one look at my best pain face (the long wait to see him hadnt exactly been comfortable), and immediately signed off on my card. We exchanged few words.
At this time, Dr. Stacey had become my primary care doctor, despite the fact that he was a specialist. I had recently parted ways with my normal doctor, and I was reluctant to pursue another, as it can take weeks to convince him/her that my condition is authentic, which is usually followed by brief, ego-driven passion: These other doctors may not have been able to fix it, but I can! Trust me, Im the one you were looking for. This is followed by a period of odd resentment and then we can finally start building a good relationship. It takes a big chunk of my daily energy budget to do something like that, so I tend to put them off for as long as possible.
As he was now handling all of my prescriptions, I thought Dr. Stacey should know that I was a medical marijuana user. He became visibly upset; he still felt the stim should be sufficient for pain, and he didnt like how cannabis interacts with people who have painful conditions like mine. He warned me that I would completely lose all motivation to do anything, that I would not be able to get better while I was using pot (this, despite having gone through about four physical therapists who had let me go, typically after the first session, fearing they were doing more harm than good). No, he would much rather I continue to spend days at a time in a horizontal position while he continued not offering any solutions beyond willing the stimulator to start working properly.
I was furious. Here was the man who had not only ramped me up from vicodin to fentanyl in the space of less than a year, something I now know is incredibly dangerous and stupid (more on that in my next post). Here was the man who had installed my stimulator differently than what I had originally agreed to, while I was under heavy anesthesia , unable to stop him. Here was the man who still believed my stim was working perfectly fine, despite the fact that I was now practically begging for additional surgery to reposition the leads. He had taken away my primary pain relief, refused to fix my only other major pain relief, and now he was standing in front of me, bitching about my decision to turn to alternative medicine.
I wanted to punch him in the face but I didnt. I stood up, walked out, and never came back. I needed to put together a new team of doctors who would support my choices and maybe, hopefully, LISTEN to me, something Dr. Stacey did less and less as time went on. But I needed them fast; with Dr. Stacey out of the picture I had no one to turn to. More than anything, I needed a primary care doctor. I needed a damn good one, too.
NEXT: New doctors, new tech.
perryfarrell
Member
Holy bejeebus dude! I'm glad things didn't end worse than they did.... I also didn't know weed is that powerful a painkiller. Good luck w/ everything
Ultimatum said:
Well, I think that a lot of the stuff he does in the story seems reasonable from an outside perspective.
He may have installed the leads in a different place, but he did it based on the best evidence he had at the time of the surgery.
He may have refused to move the leads, but based on multiple x-rays, it didn't look like there was anything wrong with the current configuration. He may have felt that operating again would put the OP at risk with no reason to expect improvement.
He may have taken the OP off pain-killers cold turkey, but the OP was abusing them and OD'd.
That may be true, but at some point he needs to listen to what his patient is telling him. The OP wasn't abusing the drugs until he had become so frustrated with his Dr that wasn't listening to a thing the patient was telling him. Not really good behavior on part of the Dr although OP probably should have sought out a 2nd opinion at some point. But, given his description of new Drs I could see why why he might be reluctant to do so.
Kilgore Trout
Member
This is really quite interesting. I mean, you hear about medial marijuana being used by cancer patients, but I didn't know that it could provide relief to such a great extent. Good thing you're in Oregon.
shanshan310
Member
smurfx said:
I know! I was like "oooh 2008! I don't have to wait to see what happens!" and now I do
I hope everything worked out in the end for you OP!
echoshifting
Banned
tokkun said:
Make sure to come back for part 2 dude.
shanshan310
Member
echoshifting said:
then hurry and tell us!
echoshifting
Banned
: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!"
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.
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!"
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.
MWS Natural
Member
Good writing, looking forward to Part 2.
Seraphis Cain
bad gameplay lol
Oh man. Can't WAIT for part 2.
This is like waiting for the season premiere of your favorite show or something. :lol Must know what happens after the cliffhanger!
This is like waiting for the season premiere of your favorite show or something. :lol Must know what happens after the cliffhanger!
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