BlackGoku03
Member
Why do they give you so much trouble if you hurt yourself at work?fallout said:
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Surgery-age: in two weeks I will be a cyborg
- Thread starter echoshifting
- Start date
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Subscribed as well. My mother can kind of relate to your issues - not the same, though. She used to be a corrections officer and got hurt at work when a shitty ass chair broke and she fell onto her back. 6 months later, with the pain getting worse and worse, she finally went to the doctor.
Turns out she had 3 crushed disks in her back and other stuff messed up. She had major back surgery, has two metal rods grafted to her spine, and spent almost a year in bed only moving to do the necessary stuff.
She's in a state where if she slips and falls she's paralyzed for life, yet despite this she does dance aerobics and still continues to live her life rather then dwelling on it. So, like you, she's not giving up and is fighting the good fight despite the odds.
I wish the best for you and hopefully this new set of doctors comes up with a solution that will allow you to function like a normal human being in the long-term.
Turns out she had 3 crushed disks in her back and other stuff messed up. She had major back surgery, has two metal rods grafted to her spine, and spent almost a year in bed only moving to do the necessary stuff.
She's in a state where if she slips and falls she's paralyzed for life, yet despite this she does dance aerobics and still continues to live her life rather then dwelling on it. So, like you, she's not giving up and is fighting the good fight despite the odds.
I wish the best for you and hopefully this new set of doctors comes up with a solution that will allow you to function like a normal human being in the long-term.
Dead Man said:
It's a time issue rather than a money issue. They don't want to have to deal with being subpoenaed for court, or having to go testify or anything like that.
I saw plenty of doctors that workmans comp SENT me too (who really don't have your best interest in mind), but since my case went to settlement, I have 2 years to reopen it. So finding a doctor outside of their system was a bit tricky
It's not that they really give you trouble, but it just generates more trouble because of all the potential legal issues and paperwork. It got worse when my boss only submitted part of the paperwork and they were threatening to fine him, so they were calling me about it and blah blah blah.BlackGoku03 said:
If I really needed it, I would appreciate it being there. Otherwise, it's just not worth it.
shanshan310
Member
hanging off every word, man. Keep it coming!
I started telling my mum about it actually, since she has a lot of back problems, so she's waiting to hear the update too :lol
I started telling my mum about it actually, since she has a lot of back problems, so she's waiting to hear the update too :lol
echoshifting
Banned
2 of 2
First of all I want to apologize for the delay. I thought I could get this out faster but its been kind of a shitty couple of weeks, pain-wise.
All right. Where was I? I had made the decision to kick the Pain & Wellness Center at OHSU to the curb, Dr. Stacey in tow, and find some new docs. It was clear that, whatever his motives may have been, Stacey was out of ideas. He started to make suggestions like try taking some Vitamin __, and when I came back a couple months later, he would make suggestions like well, keep taking those vitamins, start taking vitamin _____ too. The overdose, the medical marijuana, the busted stim these were all big issues we didnt see eye to eye on, and they were clearly obstructing the doctor/patient relationship. I didnt trust him, and he didnt trust me. Time to move on.
Now, at this juncture Im going to switch to identifying my doctors by their last initial, as they have all supported my decision to continue with medical marijuana; given the stigma that still exists I think anonymity is best. I have no problem identifying Dr. Stacey, as my accusations are relatively well-known in the Portland medical community. There isnt anything in that last post he or his superiors have not heard somewhere else before (and if they haven't, I don't mind sharing). Its a shame, because all of these doctors are amazing and deserve full credit, but it doesnt strike me as a good risk to take.
Well skip the long, dull process of finding a new primary care doctor and go straight to Dr. Bs office. 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, killer 80s 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 except that despite all this, he is at heart a good man who genuinely wants to help.
We went through the typical beginnings I described in part 1 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 couldnt fix me that my condition was for life, barring some miraculous invention down the road. We were never going to hit 100% recovery. I cant 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. Ill 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 chronic condition (that isn't life-threatening) 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, Dr. B 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.
At this point, I feel like I should explain how a chronic pain patient's addiction to opiates isn't at all like that of the recreational user. Imagine you burned your hand on a stovetop while cooking dinner. You rush across the room and turn on the cold water, then get a little ice for your injury. Its no big deal but you dont want to handle the pan on the stove again until the pain in your hand has quieted.
Later, you burn your hand again doing the same exact thing (you clumsy dolt). Once again, you head to the sink, turn on the cold water, then grab an ice pack for your hand. Your wife/SO/roommate glares at you. What are you doing? the say. You just did that two hours ago. But you dont care, and you say so. Your hand hurts. A lot. The only thing that can make it feel better is water and the ice pack; what reasonable person would deny you either of those things?
Its sort of like that. The chronic pain patient isnt addicted to narcotics in the traditional sense; it is just a small piece of the whole malfunctioning brain issue chronic pain conditions are associated with. Even if your pain never stops, and you know it will be just as bad if not worse tomorrow, your brain doesnt care; you instinctively go after whatever you need to feel better if water and ice helped your burned hand the first time, of course youll pursue the same strategy to treat your next burn.
People with chronic pain need to learn to overcome this instinct, because for most of us, it isnt possible to ever reach 100% relief. Unrestricted access to powerful narcotics, therefore, is a risky proposition. Lets say taking your prescribed dose of narcotics gives you 20% relief (about average). But you take another one, and now youre at 28% relief. Then you take a third and youve managed to get to 35%, and before you know it you are smoking fentanyl, dancing with Death at the 80% mark. The chronic pain sufferer isnt looking for a high. Hes just looking for a few minutes of peace. It's easy enough to fool yourself into minimizing the risk...even if it's just for a few minutes.
Aside: this is one of the main reasons medical marijuana is so awesome for chronic pain patients it wont kill you! I can take as much as I want as I need it.
And this is why, even if its a critical part of treatment strategy, chronic pain patients should not have complete control over narcotics prescriptions. Period, end of story. The temptation to take just one more for a little more relief is more than a person could reasonably be expected to bear, particularly a person who has climbed every rung of the opiate ladder in the space of a year. Even if it's incredibly, incredibly dangerous (like smoking fentanyl). I'm not a dumb guy, and I did it anyway, knowing full well the peril I had placed myself in. That primitive part of the brain tends to take over when you're in pain, and it doesn't always make good choices. ;p
This isn't limited to narcotics. It's very, very hard to conserve drugs and use them as intended. It takes a lot of willpower and in my case a supportive wife to pull it off. Holly had always been nervous about taking charge of this; she was worried (with good reason) that I would be able to con her out of extra meds whenever I felt like it. My near death by overdose changed her mind. She bought a hefty key-operated safe, and she keeps the one key with her at all times. She does an exceptional job keeping my stock safe from caveman brain.
Dr. B didnt 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, very bright, who specializes in stims. She also happens to be extremely anti-narcotic for treating neurological pain disorders, and pro-medical marijuana. Furthermore, she felt it was obvious that the device wasnt functioning properly, and she had some thoughts on why that might be, although she wasnt ready to draw any conclusions just yet. She had several ideas on how to proceed:
a) Dr. S meets with a brain trust of neurologists on a weekly basis, and she planned to present my case to them (!).
b) It sounded like the Medtronic reps Id been unable to convince had since moved on (except one), so she wanted me to meet with the new reps to see if they had any ideas.
c) She wanted to try out some new tech: peripheral leads (below).
d) She referred me to a neurological surgeon to see if he thought I was a viable candidate for surgery, in the event that the old leads had to be removed.
I left that day feeling completely recharged, and eager to start trying new strategies out again we had turned a corner.
I arranged to meet with Medtronic that week while I waited for Dr. S to get back to me regarding her meeting. I ended up getting an appointment with Andrew the one guy still left from the Dr. Stacey era. I was certain he would continue the same old song and dance from that office, and was surprised when he changed his tune almost immediately, agreeing with me without hesitation that it was obviously not working right. Wait, what? Hadnt he just told me a couple of months ago that it was fine? At this inquiry, he told me in the nicest possible way, that he was just a technician/programmer figuring out how to respond to those sorts of complaints would have been the doctors decision. He stuck a couple new programs in the remote but not too many; just enough modifications to give us a better idea of what I needed when they put the peripheral leads in, which he intended to recommend to Dr. S.
When I returned to Dr. Ss office, she told me about her meeting with this group of neurologists some of the best in the state and why they agreed that the stim was not functioning. Apparently there is something in the specific area where my leads had been placed (on my thoracic spine) that can cause problems. I wish I could remember what it was (I want to say a ligament?), but Im not sure. This area of the spine is particularly narrow and hard to work with, so this sort of problem isnt unheard of or even all that uncommon. If the leads are placed juuuust slightly outside the appropriate area, they can cause massive amounts of electrical discharge to build up in that area and release as soon as I change positions or perform certain tasks. They had all agreed that my symptoms were a textbook case.
Unfortunately, too much time had passed since the initial surgery to simply slice me back open and readjust them. Dr. S believed that significant scar tissue would have formed by now, and given the bizarre scar tissue found during my combo lap. appendectomy/cholecystectomy, she felt the risks would be much higher than the initial surgery. She sent me to a neurosurgeon she worked with who well call Dr. H, and he agreed; given my poor health and the scar tissue weirdness, he did not think I was a good candidate for more surgery on my back. Eventually, all three docs and the Medtronic tech agreed that the peripheral leads were the best course of action. While I was in Dr. Hs office though, I just so happened to spot a pamphlet for a brand new piece of tech that I found incredibly exciting. The minute I saw that pamphlet I knew thats what I wanted, and I focused all my efforts on acquiring it. To get the docs to play along, though, I needed to try the peripheral leads (and hey, you never know, maybe thats all I would need).
So, what are they?
As noted on the first page, the spinal cord stimulators leads are tethered to the spinal cord (note: if its a little foggy, this would be a good time to go back and review how this works). From here, the leads can send an obstructive signal to most places in the body. Unfortunately, they have a very difficult time hitting the abdomen where my pain first developed. Dr. S believed that, even if we could get it working properly, the stim would never be able to reach some of the worst areas on my abdomen.
A PNFS (peripheral nerve field stimulation) system works a bit differently. You have a generator installed somewhere which connects to two or more electrical leads. Instead of tethering the leads to the spine, however, the leads are threaded directly into the painful area. In this way, a PNFS system is much more like a TENS unit than a spinal cord stimulator is, as it is installed directly into the painful area and emits a pulsing electrical field. Think of the spine as the middle man PNFS is sort of the take out the middle man approach.
Unfortunately, I couldnt find a picture but it looks quite similar to the SCS image back on page 1. Its just installed differently.
Dr. S was pretty unhappy that the SCS test had been so brief; she believed the problem in the OR (when Dr. Stacey decided to switch up the lead placement) could have been avoided with the more rigorous test recommended by Medtronic (Medtronic recommends 2-3 days minimum, but Dr. Stacey removed the test unit after less than 24 hours). Since that hadnt turned out very well, she wanted to be very careful with the test unit, so I would have to wear the unit for a week. Im awfully glad she insisted, though, or Id have more useless metal junk in my body today.
Like the SCS, the PNFS test unit involves surgically installing the leads, but not the generator. You simply carry the generator with you cause its connected to you, so you sort of have to. ;p The remote itself is identical to my normal remote. From the users perspective, the only difference in function is the fact that its connected to wires jutting out of your stomach instead of your back.
The PNFS test did not go well. My abdomen is simply too tender for stimulation that direct. I couldnt keep it on for more than five minutes at a time, and I found that I was generally worse off afterwards than I was when I started. The sensation was completely different, and this is apparently mostly untrue for most folks who have this done (though, it is typically used for other sorts of injuries). Even at a fraction of the power, compared to the SCS, and in some of the same areas (whatever the SCS is able to get to), the sensation was horrible. I could not bear it past 0.8 on a 10-point intensity scale. Im used to anywhere from 2.0 to 5.8 on the SCS.
I honestly cant even explain to you why this was. Something about the pulse coming directly from those wires buried in my most painful areas was almost more than I could bear. I ended up spending the tail end of the testing period with the PNFS unit deactivated. It was obvious after the second day that this wasnt going to be the answer. But, Im glad I tried it.
Im also kind of glad it didnt work out, though. PNFS has a major disadvantage: it would require its own generator. I already charge the unit on my spine at least once a week, and it isnt the most pleasant experience in the world not to mention, it keeps my butt glued in one position for hours, sometimes an entire day. It needs to be in a very precise spot on my back to charge it, and it doesnt beep or anything if it falls off. I cant even imagine having to charge two units at different times.
Now, by this time I had been campaigning all of my docs HARD for that awesome new tech I happened to spot in Dr. Hs office at the very least it would give me the chance to finally be an early adopter! Very, very few people in the country have this tech at the time, only a couple hundred people had it put in (though Im sure that number is higher now).
Well ? What is this mysterious tech and did it work? Sorry, but youre going to have to wait for part 3 (of 2) to find out.
Next: still up shit creek...but they finally throw me a paddle...
Note: sorry if the last half is a bit sloppy, I'm on a train and about to lose internet for a couple of hours. Had this all ready to go so thought I'd slap it up anyway.
First of all I want to apologize for the delay. I thought I could get this out faster but its been kind of a shitty couple of weeks, pain-wise.
All right. Where was I? I had made the decision to kick the Pain & Wellness Center at OHSU to the curb, Dr. Stacey in tow, and find some new docs. It was clear that, whatever his motives may have been, Stacey was out of ideas. He started to make suggestions like try taking some Vitamin __, and when I came back a couple months later, he would make suggestions like well, keep taking those vitamins, start taking vitamin _____ too. The overdose, the medical marijuana, the busted stim these were all big issues we didnt see eye to eye on, and they were clearly obstructing the doctor/patient relationship. I didnt trust him, and he didnt trust me. Time to move on.
Now, at this juncture Im going to switch to identifying my doctors by their last initial, as they have all supported my decision to continue with medical marijuana; given the stigma that still exists I think anonymity is best. I have no problem identifying Dr. Stacey, as my accusations are relatively well-known in the Portland medical community. There isnt anything in that last post he or his superiors have not heard somewhere else before (and if they haven't, I don't mind sharing). Its a shame, because all of these doctors are amazing and deserve full credit, but it doesnt strike me as a good risk to take.
Well skip the long, dull process of finding a new primary care doctor and go straight to Dr. Bs office. 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, killer 80s 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 except that despite all this, he is at heart a good man who genuinely wants to help.
We went through the typical beginnings I described in part 1 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 couldnt fix me that my condition was for life, barring some miraculous invention down the road. We were never going to hit 100% recovery. I cant 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. Ill 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 chronic condition (that isn't life-threatening) 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, Dr. B 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.
At this point, I feel like I should explain how a chronic pain patient's addiction to opiates isn't at all like that of the recreational user. Imagine you burned your hand on a stovetop while cooking dinner. You rush across the room and turn on the cold water, then get a little ice for your injury. Its no big deal but you dont want to handle the pan on the stove again until the pain in your hand has quieted.
Later, you burn your hand again doing the same exact thing (you clumsy dolt). Once again, you head to the sink, turn on the cold water, then grab an ice pack for your hand. Your wife/SO/roommate glares at you. What are you doing? the say. You just did that two hours ago. But you dont care, and you say so. Your hand hurts. A lot. The only thing that can make it feel better is water and the ice pack; what reasonable person would deny you either of those things?
Its sort of like that. The chronic pain patient isnt addicted to narcotics in the traditional sense; it is just a small piece of the whole malfunctioning brain issue chronic pain conditions are associated with. Even if your pain never stops, and you know it will be just as bad if not worse tomorrow, your brain doesnt care; you instinctively go after whatever you need to feel better if water and ice helped your burned hand the first time, of course youll pursue the same strategy to treat your next burn.
People with chronic pain need to learn to overcome this instinct, because for most of us, it isnt possible to ever reach 100% relief. Unrestricted access to powerful narcotics, therefore, is a risky proposition. Lets say taking your prescribed dose of narcotics gives you 20% relief (about average). But you take another one, and now youre at 28% relief. Then you take a third and youve managed to get to 35%, and before you know it you are smoking fentanyl, dancing with Death at the 80% mark. The chronic pain sufferer isnt looking for a high. Hes just looking for a few minutes of peace. It's easy enough to fool yourself into minimizing the risk...even if it's just for a few minutes.
Aside: this is one of the main reasons medical marijuana is so awesome for chronic pain patients it wont kill you! I can take as much as I want as I need it.
And this is why, even if its a critical part of treatment strategy, chronic pain patients should not have complete control over narcotics prescriptions. Period, end of story. The temptation to take just one more for a little more relief is more than a person could reasonably be expected to bear, particularly a person who has climbed every rung of the opiate ladder in the space of a year. Even if it's incredibly, incredibly dangerous (like smoking fentanyl). I'm not a dumb guy, and I did it anyway, knowing full well the peril I had placed myself in. That primitive part of the brain tends to take over when you're in pain, and it doesn't always make good choices. ;p
This isn't limited to narcotics. It's very, very hard to conserve drugs and use them as intended. It takes a lot of willpower and in my case a supportive wife to pull it off. Holly had always been nervous about taking charge of this; she was worried (with good reason) that I would be able to con her out of extra meds whenever I felt like it. My near death by overdose changed her mind. She bought a hefty key-operated safe, and she keeps the one key with her at all times. She does an exceptional job keeping my stock safe from caveman brain.
Dr. B didnt 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, very bright, who specializes in stims. She also happens to be extremely anti-narcotic for treating neurological pain disorders, and pro-medical marijuana. Furthermore, she felt it was obvious that the device wasnt functioning properly, and she had some thoughts on why that might be, although she wasnt ready to draw any conclusions just yet. She had several ideas on how to proceed:
a) Dr. S meets with a brain trust of neurologists on a weekly basis, and she planned to present my case to them (!).
b) It sounded like the Medtronic reps Id been unable to convince had since moved on (except one), so she wanted me to meet with the new reps to see if they had any ideas.
c) She wanted to try out some new tech: peripheral leads (below).
d) She referred me to a neurological surgeon to see if he thought I was a viable candidate for surgery, in the event that the old leads had to be removed.
I left that day feeling completely recharged, and eager to start trying new strategies out again we had turned a corner.
I arranged to meet with Medtronic that week while I waited for Dr. S to get back to me regarding her meeting. I ended up getting an appointment with Andrew the one guy still left from the Dr. Stacey era. I was certain he would continue the same old song and dance from that office, and was surprised when he changed his tune almost immediately, agreeing with me without hesitation that it was obviously not working right. Wait, what? Hadnt he just told me a couple of months ago that it was fine? At this inquiry, he told me in the nicest possible way, that he was just a technician/programmer figuring out how to respond to those sorts of complaints would have been the doctors decision. He stuck a couple new programs in the remote but not too many; just enough modifications to give us a better idea of what I needed when they put the peripheral leads in, which he intended to recommend to Dr. S.
When I returned to Dr. Ss office, she told me about her meeting with this group of neurologists some of the best in the state and why they agreed that the stim was not functioning. Apparently there is something in the specific area where my leads had been placed (on my thoracic spine) that can cause problems. I wish I could remember what it was (I want to say a ligament?), but Im not sure. This area of the spine is particularly narrow and hard to work with, so this sort of problem isnt unheard of or even all that uncommon. If the leads are placed juuuust slightly outside the appropriate area, they can cause massive amounts of electrical discharge to build up in that area and release as soon as I change positions or perform certain tasks. They had all agreed that my symptoms were a textbook case.
Unfortunately, too much time had passed since the initial surgery to simply slice me back open and readjust them. Dr. S believed that significant scar tissue would have formed by now, and given the bizarre scar tissue found during my combo lap. appendectomy/cholecystectomy, she felt the risks would be much higher than the initial surgery. She sent me to a neurosurgeon she worked with who well call Dr. H, and he agreed; given my poor health and the scar tissue weirdness, he did not think I was a good candidate for more surgery on my back. Eventually, all three docs and the Medtronic tech agreed that the peripheral leads were the best course of action. While I was in Dr. Hs office though, I just so happened to spot a pamphlet for a brand new piece of tech that I found incredibly exciting. The minute I saw that pamphlet I knew thats what I wanted, and I focused all my efforts on acquiring it. To get the docs to play along, though, I needed to try the peripheral leads (and hey, you never know, maybe thats all I would need).
So, what are they?
As noted on the first page, the spinal cord stimulators leads are tethered to the spinal cord (note: if its a little foggy, this would be a good time to go back and review how this works). From here, the leads can send an obstructive signal to most places in the body. Unfortunately, they have a very difficult time hitting the abdomen where my pain first developed. Dr. S believed that, even if we could get it working properly, the stim would never be able to reach some of the worst areas on my abdomen.
A PNFS (peripheral nerve field stimulation) system works a bit differently. You have a generator installed somewhere which connects to two or more electrical leads. Instead of tethering the leads to the spine, however, the leads are threaded directly into the painful area. In this way, a PNFS system is much more like a TENS unit than a spinal cord stimulator is, as it is installed directly into the painful area and emits a pulsing electrical field. Think of the spine as the middle man PNFS is sort of the take out the middle man approach.
Unfortunately, I couldnt find a picture but it looks quite similar to the SCS image back on page 1. Its just installed differently.
Dr. S was pretty unhappy that the SCS test had been so brief; she believed the problem in the OR (when Dr. Stacey decided to switch up the lead placement) could have been avoided with the more rigorous test recommended by Medtronic (Medtronic recommends 2-3 days minimum, but Dr. Stacey removed the test unit after less than 24 hours). Since that hadnt turned out very well, she wanted to be very careful with the test unit, so I would have to wear the unit for a week. Im awfully glad she insisted, though, or Id have more useless metal junk in my body today.
Like the SCS, the PNFS test unit involves surgically installing the leads, but not the generator. You simply carry the generator with you cause its connected to you, so you sort of have to. ;p The remote itself is identical to my normal remote. From the users perspective, the only difference in function is the fact that its connected to wires jutting out of your stomach instead of your back.
The PNFS test did not go well. My abdomen is simply too tender for stimulation that direct. I couldnt keep it on for more than five minutes at a time, and I found that I was generally worse off afterwards than I was when I started. The sensation was completely different, and this is apparently mostly untrue for most folks who have this done (though, it is typically used for other sorts of injuries). Even at a fraction of the power, compared to the SCS, and in some of the same areas (whatever the SCS is able to get to), the sensation was horrible. I could not bear it past 0.8 on a 10-point intensity scale. Im used to anywhere from 2.0 to 5.8 on the SCS.
I honestly cant even explain to you why this was. Something about the pulse coming directly from those wires buried in my most painful areas was almost more than I could bear. I ended up spending the tail end of the testing period with the PNFS unit deactivated. It was obvious after the second day that this wasnt going to be the answer. But, Im glad I tried it.
Im also kind of glad it didnt work out, though. PNFS has a major disadvantage: it would require its own generator. I already charge the unit on my spine at least once a week, and it isnt the most pleasant experience in the world not to mention, it keeps my butt glued in one position for hours, sometimes an entire day. It needs to be in a very precise spot on my back to charge it, and it doesnt beep or anything if it falls off. I cant even imagine having to charge two units at different times.
Now, by this time I had been campaigning all of my docs HARD for that awesome new tech I happened to spot in Dr. Hs office at the very least it would give me the chance to finally be an early adopter! Very, very few people in the country have this tech at the time, only a couple hundred people had it put in (though Im sure that number is higher now).
Well ? What is this mysterious tech and did it work? Sorry, but youre going to have to wait for part 3 (of 2) to find out.
Next: still up shit creek...but they finally throw me a paddle...
Note: sorry if the last half is a bit sloppy, I'm on a train and about to lose internet for a couple of hours. Had this all ready to go so thought I'd slap it up anyway.
Snytbaggen
Member
You should write a book. Seriously. This is awesome stuff, both in writing and in content, and I really hope your symptoms have eased a bit since then.
AlphaSnake
...and that, kids, was the first time I sucked a dick for crack
Fuck. I'm on the edge of my seat, dammit!
echoshifting
Banned
Sklorenz said:So much fun to read this stuff
Not intended, I swear! Just taking a little longer to tell than I thought it would.
Thanks for the kind words, guys, once again. I am actually writing a book..but not this one. It's third in line at the moment. I dabble in it occasionally...like, say, drafting out massive summaries for gaf.
ShallNoiseUpon
Member
Augh. Just caught up on the entire story. Absolutely fascinating. Don't think I can wait until part 3 of 2!
echoshifting
Banned
It occurs to me that the thread title is sort of misleading now.
Just read your entire story in one sitting you are a really good writer, I'm still on the edge of my seat . I can relate to your situation, my mom has serious back pain she went through an operation not too long ago which helped slightly but she still has trouble sleeping and finds going to work extremely hard. That said, we're all in the right state of mind and staying optimistic about it which is important.
So I wish you and your family the very best of luck, nobody should ever have to put up with persistent pain it really is horrible.
. I can relate to your situation, my mom has serious back pain she went through an operation not too long ago which helped slightly but she still has trouble sleeping and finds going to work extremely hard. That said, we're all in the right state of mind and staying optimistic about it which is important.So I wish you and your family the very best of luck, nobody should ever have to put up with persistent pain it really is horrible.
fuckin' a, man! Pumped for more, hoping it gets better for you. It just doesn't seem fair for you to be in this much pain all the time.
I don't know if you've said this, I've read it all but it's been a long time... What does the pain feel like? like can you relate it to anything that maybe others have experienced? Sorry if this is inappropriate, just curious.
I don't know if you've said this, I've read it all but it's been a long time... What does the pain feel like? like can you relate it to anything that maybe others have experienced? Sorry if this is inappropriate, just curious.
echoshifting
Banned
t0mp said:
Heh, don't worry about it. You guys would have a tough time coming up with a question that really threw me. I feel like I've been asked it all at one point or another. I'm having trouble thinking of a question I would take offense to...even "are you sure it's not in your head you fucking nutter?" I've just been asked those types of questions so many times already. I don't even blink. If anything I appreciate the opportunity to put this out there and raise awareness for these conditions. I had never even heard of such a thing before it happened to me, but the more I talk about it the more I find there are others out there with similar conditions and no answers. It's been very motivating.
I actually have a little diagram I made for my doctors illustrating how the pain is different across different areas. In color and everything! Tomorrow I will scan it and throw it up in the thread. I'm sure gaf will take me to task for my artistic ability :lol but I can take it.
mysticwhip
Banned
This is exciting! I really hope you're back to normal thanks to this new tech.
One question though. How are you able to afford all of this? Between the surgeries, checkups, medicines, & new doctors, I can only imagine this is costing you tens of thousands of dollars unless your medical insurance is great.
Can't wait for part 3!
One question though. How are you able to afford all of this? Between the surgeries, checkups, medicines, & new doctors, I can only imagine this is costing you tens of thousands of dollars unless your medical insurance is great.
Can't wait for part 3!
echoshifting
Banned
mysticwhip said:
This is a good question, unfortunately the answer is kind of complicated, drawn out and probably even a little boring...? At least I think so, but I'll do my best. The short answer...my folks really pulled us out of the fire. We were circling the drain, headed for bankrupty...tens of thousands of dollars in debt and this was BEFORE any of the crazy-ass cyborg stuff. Frankly I think they were prepared to allow that to happen - at the time they still weren't really comprehending what had happened or what the gravity of the situation was. But as they came to terms with it - and as they became grandparents - they became very active in helping us stay afloat as much as possible. So, they help us as much as they can now. Between that and insurance, it works.
The way our insurance works is sort of really really bad and sort of really really good. It's a high-deductible plan; that's insurance-speak for "we don't pay a dime unless things really go to shit." Well, in my family, things have already gone to shit, so they tend to pay a few dimes.
The bad news is that the deductible resets at the beginning of every calendar year. So, "Happy New Year" for us is more "Whee, we get to pay all the doctor bills again for a few months." We just end up spreading those bills throughout the year, since by July the insurance is usually paying at least 75% and the past few years they're paying 100% by then (I think the maximum we can pay in a year for one person is $7500).Even with help from my folks, there is no way we could afford any of the major procedures I've had the past few years - that's all insurance, and struggling for approval has been just about the most aggravating thing I have had to deal with. Delays of several months were interspersed between a doctor deciding to move forward with any of these procedures and actually being able to perform them, as insurance companies require pre-approval for procedures such as these. I'm just relieved they're still approving them; I keep waiting for them to start rejecting me.
We have been fighting for SSD benefits for years, and it looks like we will finally have our day in court sometime in early 2011. My lawyer is ready to go and thinks we can win...if we do, I will start receiving a small monthly check from the feds (amount decided by the judge), and we will receive a large lump sum for the period during which I was disabled but not receiving benefits. I will be able to use that money to pay my parents back and the monthly check should more than cover my medical bills in the future...and that will feel really damn good to be honest. It sucks having to rely on my folks to get my monthly prescriptions and pay those doctor bills but the money simply isn't there, and when you don't have a terminal illness emergency rooms don't give a shit. They just turn you away.
tl;dr - Combination of help from my parents, insurance, and debt with fingers crossed that we actually win the SSD benefits we are certain I'm entitled to. More on that later, maybe. That's a whole 'nother chapter...
edit: Of course none of this takes into account my prescription medication, which in and of itself can run anywhere from $150-$300/mo (right now it's usually about $200/mo). If I end up having to buy pot for some reason (such as being out of town for three weeks, as I just was), you can tack a little more on there depending on how much I had to buy. It gets rough, and it's hard to accept that we will never come out from under it. We are lucky in that my folks are pretty comfortable, financially, and they're willing to wait it out as long as it takes until we are able to not only support ourselves but also keep up with all of these medical bills. It's an awfully steep hill, though.
echoshifting
Banned
Almost three years in the waiting...and what should I find in my mail from the time I was out of town than the notice that finally - FINALLY - my SSD hearing has been scheduled. January 31, 2011. This is a make-or-break moment; wish me luck.
Still working on part 3 and I'll let you know more about the forthcoming hearing as I am able; of course I need to talk to my lawyer first and determine where we stand.
Still working on part 3 and I'll let you know more about the forthcoming hearing as I am able; of course I need to talk to my lawyer first and determine where we stand.
BeautifulMemory
Member
dude...you are awesome. Keep us posted!
echoshifting
Banned
thespot84 said:
You know, the thought did occur to me ;p
FunkyPajamas
Member
Best of luck on your hearing! Looking forward to great news from you.
GroteSmurf
Member
Very Well written story mate. Wish you best of luck with installing the new tech upgrade
echoshifting said:
I hate that shit so much. At one point the doctors put me on Lyrica and it took 27 days before I finally got it (and had to fight with idiots for every time I was getting a refill)
I go for my doctor shit in ONE WEEK, and if they want another MRI (they won't accept MRIs taken more than 6 months ago), I know it'll be a fight to make insurance approve it since I've already had 2. (but I'll bring my films along anyway)
=/
echoshifting
Banned
atomsk said:
Lyrica seems to be one of the worst, due to its expense and many off-label uses. My insurance company required six-month trials of two different drugs - Neurontin and Cymbalta - before they would approve Lyrica. Fortunately I had already tried Neurontin but wow, Cymbalta was fucking awful, and I had withdrawal after-effects for over two years after discontinuing it.
Worth it, though. Lyrica is a fantastic drug. I still take it.
echoshifting
Banned
Not sure if I am going to be able to get part 3 up before my hearing but I will do my damnedest. Same goes for the diagram I'm gonna scan. I'll keep you all posted.
Fucking fuck fuck fucking brain zaps. Fuck them. Fucking FUCK them. FUCK. Fuck these are terrible. This is the withdrawal syndrome I had intermittently for years after dropping Cymbalta.
Protip: your doctor will NEVER think to mention it when getting off a drug is going to suck. I've gotten in the habit of doing plenty of my own research before I pop a new pill in my mouth, and I'd encourage all you healthy folks to do the same. I don't put much stock in the outlier horror stories that tend to pop up on the internet, but certain kinds of drugs really do have severe withdrawal effects on a large percentage of users.
atomsk said:
Fucking fuck fuck fucking brain zaps. Fuck them. Fucking FUCK them. FUCK. Fuck these are terrible. This is the withdrawal syndrome I had intermittently for years after dropping Cymbalta.
Protip: your doctor will NEVER think to mention it when getting off a drug is going to suck. I've gotten in the habit of doing plenty of my own research before I pop a new pill in my mouth, and I'd encourage all you healthy folks to do the same. I don't put much stock in the outlier horror stories that tend to pop up on the internet, but certain kinds of drugs really do have severe withdrawal effects on a large percentage of users.
Neuromancer
Member
Somehow I've never seen this thread before. Dude that's crazy. I really hope you get relief some day.
Peterthumpa
Member
Amazing story. I would buy your book in a heartbeat
.
Hope you the best!
if you write that GAF is your number one fan
Hope you the best!
echoshifting
Banned
felipepl said:
If/when any of this becomes a book, yes, the story's popularity in a "large online community" would be a nice selling point.
Not that I'm getting too far ahead of myself or anything but who knows, maybe the word "believe" would make its way into the dedication...
Good thing my avatar's head already inflates.
Peterthumpa
Member
That would make me douple dip. :lolechoshifting said:If/when any of this becomes a book, yes, the story's popularity in a "large online community" would be a nice selling point.
Not that I'm getting too far ahead of myself or anything but who knows, maybe the word "believe" would make its way into the dedication...
Good thing my avatar's head already inflates.
echoshifting
Banned
Hey guys,
I still can't talk about this much online, but I did want to give the briefest of updates since it's pretty much the only thing on my mind - the hearing is finally upon me. Six years, reams of paperwork, three appeals...coming down to two hours in front of a judge on Monday afternoon.
On the one hand, younger folks don't win disability cases that often, as a rule. On the other, I was pleasantly surprised to learn that I am going in with a bit more medical backing than I originally expected. I was crossing my fingers for a mediocre letter from my primary care doc...he has agreed to write a solid one, though I haven't seen it yet. My psychologist actually volunteered yesterday to fill out a form with a numerical scale measuring disability..and I received a similar report from an office dedicated to rehabilitation therapy. My PC doc sent me in to have them fill it out, and they came back with reasonably solid results.
Beyond those recommendations I have such a thick stack of paperwork, evidence, etc. that I feel my chances are better than the average 30 y/o. I guess we'll see.
Looking forward to finishing the tale and catching you guys up on all the craziness of the past month swirling around the hearing. Monday, Monday, Monday. Can't believe it is finally here. Portland has one of the slowest turnaround times on disability claims in the country; I have been waiting a lonnnnnnng time.
I still can't talk about this much online, but I did want to give the briefest of updates since it's pretty much the only thing on my mind - the hearing is finally upon me. Six years, reams of paperwork, three appeals...coming down to two hours in front of a judge on Monday afternoon.
On the one hand, younger folks don't win disability cases that often, as a rule. On the other, I was pleasantly surprised to learn that I am going in with a bit more medical backing than I originally expected. I was crossing my fingers for a mediocre letter from my primary care doc...he has agreed to write a solid one, though I haven't seen it yet. My psychologist actually volunteered yesterday to fill out a form with a numerical scale measuring disability..and I received a similar report from an office dedicated to rehabilitation therapy. My PC doc sent me in to have them fill it out, and they came back with reasonably solid results.
Beyond those recommendations I have such a thick stack of paperwork, evidence, etc. that I feel my chances are better than the average 30 y/o. I guess we'll see.
Looking forward to finishing the tale and catching you guys up on all the craziness of the past month swirling around the hearing. Monday, Monday, Monday. Can't believe it is finally here. Portland has one of the slowest turnaround times on disability claims in the country; I have been waiting a lonnnnnnng time.
I know gaf ain't exactly the most spiritual bunch but if you ARE and you feel up to offering a prayer on my behalf I would be grateful. Atheist-gaf, I am grateful for any well-wishes, crossed fingers, etc. as well.
AlphaSnake
...and that, kids, was the first time I sucked a dick for crack
echoshifting said:I know gaf ain't exactly the most spiritual bunch but if you ARE and you feel up to offering a prayer on my behalf I would be grateful. Atheist-gaf, I am grateful for any well-wishes, crossed fingers, etc. as well.
Hey man, you've got only my best wishes. Good luck, dude!
FunkyPajamas
Member
Best of luck to you, be strong!
Shalashaska
Member
Best of luck for Monday.
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