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Thread: before you decde to suffer in silence

  1. #11
    remissiom my ass , this is 2 nights in a row, woken up by neuro pain
    oh well, just tried some reefer, see if that works

    [This message was edited by metronycguy on 04-24-04 at 02:44 AM.]

  2. #12
    Senior Member Aquitaine's Avatar
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    Dejerine, You understood exactly what I described, and it is MOST embarassing at work during meetings, I'll start to say something and suddenly it hits, and I have to put up a hand and look down so they won't see my face, somehow mumble "excuse me for a sec", wait for it to subside a little, grit my teeth and start over saying, "I'm sorry, where were we?". It sucks, I get so angry at myself, its a very dangerous state of mind to get into, as the worst anger I have I reserve for myself. An unfortunate personal trait, inherited, as I also watched my father self destruct via ulcers and heart attacks from it. Right now I'm consulting for my company, working 2-3 days a week, as they know what I'm going through (its not just that they're being nice, their scared to death because I'm the only person that understands their video compression codecs ). Insteresting what you say about shooting pain versus burning pain. My cramping pain just restarted after I increased the neurontin to 900mg/3 times/day. Thats really weird, I get these cramping spasms about every other day now.

    Alan, Metro, GABITRIL, thanks for mentioning it, sorry I misspelled it. I'm glad to hear you guys have had some experience with it, I was told its a pretty new drug and shouldn't put me to sleep as much as neurontin. However I'm a little put off by what it claims as its primary use: Anxiety Disorder. I don't think my pain involves anxiety at all. I'm going to see my doctor next week and ask him about this, and also Ultram as a breakthrough med for these new spasm pains. Sorry to hear your neuro pain is returning metro, hope you find some relief (from where-ever ). How has your back been Alan, found any relief for that at all?

    Sporto, your quote by Dr. McHenry must have struck a nerve, haven't vented like that in a while . Felt good, anyway, thanks for your words on respect <sigh> yeah, guess I'm an old timer alright. I'll tell you the worst part about being one though. Back when I was in rehab, you are absolutely right about how much worse EVERYTHING was, meds, equipment, etc. I was in rehab for 14 months, a long time when the average was 3 months. This was due to the extensive operations I needed to rebuild my spinal cord, and during all that time I had the privledge of making close friends with 4 guys, 2 were hi-level complete quads, 2 were incomplete. We were all under 20, and drove the docs and nurses nuts, but we made up our own support group, we would have gurney races on the surgical wards (we would lie down on them and use canes like we were skiing) around 3am, then have bets to see who could keep a wheelie on one wheel the longest (the incompletes of course). And the worst part? Within 4 years, they had all died from one reason or another. Part of that was the treatment available then, another part was monetary, they were all lower middle class and didn't have the resources or insurance to get the treatment they should have had, and of course, one was a suicide. That was before the internet etc., so I assumed quads just had a short life expectancy. Now I know better, but that still seems like a heavy toll.

    So did you ever get your dog back? I had a companion dog (german sheperd) for 10+ years that saved my life once, so he was a pretty important friend to me, in his later years, he became just a family dog, as I didn't need his services so much. To say he was spoiled would be a severe understatement . I've done some biking, no skiing (yet), but I did get a glider license. Haven't heard of scalp acupuncture, what does that affect? I think its great that you're going back to school, digging into computer/web stuff. Most of us that were injured on bikes or cars usually turned wrenches as well, and seem to have a strong aptitude for computer work. At first I hated the idea of working on nerdy computers, gawd how boring , now I don't wanna do anything else. I'll bet its tough going back, competing with the younger set . I can't imagine what its like, but I have a lot of respect for your efforts, and I'd be willing to bet you'll make it just fine.

    [This message was edited by Aquitaine on 04-24-04 at 11:02 AM.]

  3. #13
    The only pain I felt during rehab was having to leave JT(my dog)my friend and companion for 15 years in Houston. He was old and ailing and I really couldn't ask my friends or family to care for him while I adjusted. I got to see him one more time.
    Originally posted by Aquitaine:

    Dejerine, You understood exactly what I described, and it is MOST embarassing at work during meetings, I'll start to say something and suddenly it hits, and I have to put up a hand and look down so they won't see my face, somehow mumble "excuse me for a sec", wait for it to subside a little, grit my teeth and start over saying, "I'm sorry, where were we?". It sucks, I get so angry at myself, its a very dangerous state of mind to get into, as the worst anger I have I reserve for myself. An unfortunate personal trait, inherited, as I also watched my father self destruct via ulcers and heart attacks from it. Right now I'm consulting for my company, working 2-3 days a week, as they know what I'm going through (its not just that they're being nice, their scared to death because I'm the only person that understands their video compression codecs ). Insteresting what you say about shooting pain versus burning pain. My cramping pain just restarted after I increased the neurontin to 900mg/3 times/day. Thats really weird, I get these cramping spasms about every other day now.

    Alan, Metro, GABITRIL, thanks for mentioning it, sorry I misspelled it. I'm glad to hear you guys have had some experience with it, I was told its a pretty new drug and shouldn't put me to sleep as much as neurontin. However I'm a little put off by what it claims as its primary use: Anxiety Disorder. I don't think my pain involves anxiety at all. I'm going to see my doctor next week and ask him about this, and also Ultram as a breakthrough med for these new spasm pains. Sorry to hear your neuro pain is returning metro, hope you find some relief (from where-ever ). How has your back been Alan, found any relief for that at all?

    Sporto, your quote by Dr. McHenry must have struck a nerve, haven't vented like that in a while . Felt good, anyway, thanks for your words on respect <sigh> yeah, guess I'm an old timer alright. I'll tell you the worst part about being one though. Back when I was in rehab, you are absolutely right about how much worse EVEYTHING was, meds, equipment, etc. I was in rehab for 14 months, a long time when the average was 3 months. This was due to the extensive operations I needed to rebuild my spinal cord, and during all that time I had the privledge of making close friends with 4 guys, 2 were hi-level complete quads, 2 were incomplete. We were all under 20, and drove the docs and nurses nuts, but we made up our own support group, we would have gurney races on the surgical wards (we would lie down on them and use canes like we were skiing) around 3am, then have bets to see who could keep a wheelie on one wheel the longest (the incompletes of course). And the worst part? Within 4 years, they had all died from one reason or another. Part of that was the treatment available then, another part was monetary, they were all lower middle class and didn't have the resources or insurance to get the treatment they should have had, and of course, one was a suicide. That was before the internet etc., so I assumed quads just had a short life expectancy. Now I know better, but that still seems like a heavy toll.

    So did you ever get your dog back? I had a companion dog (german sheperd) for 10+ years that saved my life once, so he was a pretty important friend to me, in his later years, he became just a family dog, as I didn't need his services so much. To say he was spoiled would be a severe understatement . I've done some biking, no skiing (yet), but I did get a glider license. Haven't heard of scalp acupuncture, what does that affect? I think its great that you're going back to school, digging into computer/web stuff. Most of us that were injured on bikes or cars usually turned wrenches as well, and seem to have a strong aptitude for computer work. At first I hated the idea of working on nerdy computers, gawd how boring , now I don't wanna do anything else. I'll bet its tough going back, competing with the younger set . I can't imagine what its like, but I have a lot of respect for your efforts, and I'd be willing to bet you'll make it just fine.

    [This message was edited by Aquitaine on 04-24-04 at 10:39 AM.]
    With all of our running and all of our cunning
    If we couldn't laugh we would all go insane

  4. #14
    Senior Member Aquitaine's Avatar
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    Really sorry to hear that, dogs become a very important part of our lives, don't they. Have you tried getting another one yet? I trained my german sheperd to open the door of a lower cupboard, get his food can out, shut the cupboard door, and put it up on the counter next to the opener for me. Took a few weeks , but it came in really useful sometimes when I wasn't up to doing it. It was terrible when he died, but after about a year, we got another one. He's a little furball that I take for walks, and he gets my mind off things.

  5. #15
    Nah there are times I would really like another one but there are too many things to get in order first. The main one before getting another dog is buying another house. Right now I live in an apt. behind my folks house that workmans comp built for me. Luckily I'm collecting workmans comp from a pretty good insurance company but contrary to what a lot of people think I'm not getting rich. They haven't even talked about my mmi yet which is pretty good usually that comes up at 2 years. I get enough from that to get another place but I figure I'll stay here until I'm about done with school. There are days though I don't think I can make it that long family is good but not all the time. I was glad I was hurt 1500 miles from home I could concentrate on rehab and not have to deal with family daily. If you can't tell I've always been fiercly independent so this initally put a crimp in my lifestyle. School is a good social interface but I'm surrounded by kids that are just out of high school talk about your generation gap. they still know how to study I need to relearn study habits, it sure isn't the same as when I went decades ago. The first Algebra test I had all the others in class whipped out thir calculators and flew through it while I worked everything out by hand I didn't realize you could use them on tests. Back in my day we never would have considered using calculators of coarse they hadn't been invented yet!

    With all of our running and all of our cunning
    If we couldn't laugh we would all go insane

  6. #16
    Senior Member Aquitaine's Avatar
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    Yeah, an apartment would make it hard to have a dog. I can't imagine what its like going back to school now, it was hard enough for me to go back to college after 2 years in hospitals and rehab. The social interaction sounds good though, with all the pain I'm in, I've been more of a shut-in lately. I just got a new wheelchair though, titanium and very lightweight. I've started getting out, but I gotta get my butt up and out more than I have, somehow I have to get past this pain and start doing things again, I'm a roamer by nature.

  7. #17
    You asked about scalp acupuncture and I spaced it off sorry! Scalp acupuncture is very new 30-40 years old. It was developed and mostly used for MS victims but is succsessful with other nerological disorders. For SCI it's best used as soon as possible after injury but has had success used later on. Its usually used along with breathing exercises and visulazation. Instead of being stuck straight in they are inserted at a 15 degree angle and then manipulated. sessions can last up to 72 hours. It's a technique I belive they are using with sucsess at project walk.http://www.projectwalk.org/
    this is a good source for alternative therapies
    http://www.healingtherapies.info/scalp_acupuncture.htm
    Titaniums are nice i was able to try a tylite, the quickie lite, & the top end titanium. I opted for the top end terminator ss mainly because I liked the ride and I didn't need to worry about the few extra pounds because I don't have to pull it in a car. Wouldn't ya know it they discontinued it the year I bought it and started offering suspension on their titanium chair. I figured shocks would help with a smooth ride a not trigger my spasms as much.
    Hey its been good talking with ya! I'm t-11 what level are you


    Originally posted by Aquitaine:

    Yeah, an apartment would make it hard to have a dog. I can't imagine what its like going back to school now, it was hard enough for me to go back to college after 2 years in hospitals and rehab. The social interaction sounds good though, with all the pain I'm in, I've been more of a shut-in lately. I just got a new wheelchair though, titanium and very lightweight. I've started getting out, but I gotta get my butt up and out more than I have, somehow I have to get past this pain and start doing things again, I'm a roamer by nature.
    With all of our running and all of our cunning
    If we couldn't laugh we would all go insane

  8. #18
    Senior Member Aquitaine's Avatar
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    I'm an L4 "incomplete", my L4 was smashed during the accident, and my cord was badly buised but intact, leaving me without any vertebre for about a month until they found someone willing to try and rebuild it. They took two pieces of bone from my hip and fashioned a vertebre out of them, then pinned it all together, back then it was the very first time this kind of lamenectomy had ever been done, thats why I was in the hospital so long.

  9. #19
    Now that's a story you can be proud of!!!!!!!

    With all of our running and all of our cunning
    If we couldn't laugh we would all go insane

  10. #20
    Senior Member Aquitaine's Avatar
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    It was done at Thomas Jefferson University Hospital, I remember being in this "operating theater", with students watching, and I had to sign a release so the surgeon could put pictures of my back in the text book he was writing. I owe a lot to that doctor, to this day, I haven't had ANY back pain. Obviously, since my L3, the resurrected L4 and L5 are all pinned together, my back is a little "stiff" . Other than that, I've been able to do anything anybody else can do, like a couple years after starting to work, I bought an old chevy nova SS and built a 9 sec. e/gas dragster out of it. The guys that helped me build it, let me put hand controls in it and I did several runs one sunday. Nowhere near 9 sec. runs , but it was such a rush to get back into a race car, and even with those kind of G's my back felt great. I'm proud, proud of that surgeon, he's one of those docs that make up for all the quacks that I've had to deal with over the years. We should all be proud that we have a medical system that produces such people, we could wish that it would produce more than it does, but I count myself fortunate that I was operated on by such a doctor.

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