scotty12
12-29-2003, 04:08 PM
hi all,
for the past year+ i have been on oxycodone 7.5 / 4-5 per day.
for most of the year even w/meds i was not getting enough pain relief to function.but, after numerous esi's,weight loss and pt.my pain has gone from a 9 to a 3-5 daily.it has only been about 3 months since ive "got my life back".im getting good relief from the meds and can work and more importantly spend quality time with my kids after work.but constantly get pressured from family to get off pain meds.i tapered down to just 2 a day for 2 weeks and i just couldnt do much but lay down by the time i got home from work.no problems with w/d's
just enough pain to make me miserable.i had originally planned to taper down and stop taking pain meds, just vioxx,but it didnt happen.after a couple of weeks i decided there was no point in suffering and went back to 4 per day and my wife has her husband back as do my children have a father.
my pain dr has told me that there is no problem being on meds for long term and that i could always have surgery but cant undo surgery.he is comfortable with where im at and doesnt push me for esi's as ive had 3 in the past 9 months.
a few months ago (when i was in constant agony)i had decided to find a surgeon to do the fusion L5-S1.it took months to get an appt w/ a very highly regarded ny surgeon and my consultation is coming up in a few weeks.i have decided not to have the surgery as im feeling ok w/pain meds.ive seen 2 sureons already and they all agree that if i cant take the pain (that was before esi's helped) i should go ahead and have the surgery. anyway i was just looking for advice.i dont see any reason to go and have another dr tell me what i already know and if i do go its just to make my family happy.
1)does anybody else get pressured to get off meds?
2)should i go see this surgeon althogh i have decided against surgery for now?
3)how long shoul i expect the relief from esi to last?
i would appreciate any responses..................scott
for the past year+ i have been on oxycodone 7.5 / 4-5 per day.
for most of the year even w/meds i was not getting enough pain relief to function.but, after numerous esi's,weight loss and pt.my pain has gone from a 9 to a 3-5 daily.it has only been about 3 months since ive "got my life back".im getting good relief from the meds and can work and more importantly spend quality time with my kids after work.but constantly get pressured from family to get off pain meds.i tapered down to just 2 a day for 2 weeks and i just couldnt do much but lay down by the time i got home from work.no problems with w/d's
just enough pain to make me miserable.i had originally planned to taper down and stop taking pain meds, just vioxx,but it didnt happen.after a couple of weeks i decided there was no point in suffering and went back to 4 per day and my wife has her husband back as do my children have a father.
my pain dr has told me that there is no problem being on meds for long term and that i could always have surgery but cant undo surgery.he is comfortable with where im at and doesnt push me for esi's as ive had 3 in the past 9 months.
a few months ago (when i was in constant agony)i had decided to find a surgeon to do the fusion L5-S1.it took months to get an appt w/ a very highly regarded ny surgeon and my consultation is coming up in a few weeks.i have decided not to have the surgery as im feeling ok w/pain meds.ive seen 2 sureons already and they all agree that if i cant take the pain (that was before esi's helped) i should go ahead and have the surgery. anyway i was just looking for advice.i dont see any reason to go and have another dr tell me what i already know and if i do go its just to make my family happy.
1)does anybody else get pressured to get off meds?
2)should i go see this surgeon althogh i have decided against surgery for now?
3)how long shoul i expect the relief from esi to last?
i would appreciate any responses..................scott
Sponsor
Starzz
12-30-2003, 03:40 AM
My reply to my family is "its my body and I decide what to do to it". Why suffer when you can have your life back with a few meds, its stupid. You might want too read an article in a popular magazine that just came out about "the promise of life without pain" read it first them give it too them. Hope it helps. Starzz *
*** Not sure I can name the magazine here but am sure you'll see it on a rack somewhere soon*****
*** Not sure I can name the magazine here but am sure you'll see it on a rack somewhere soon*****
Shoreline
12-30-2003, 01:39 PM
Hi Scott, It sounds like you already have this figured out. It makes no sense to have a fusion if your pain level is manageable and you don't have any neuropothy. Meaning you haven't lost reflexes, you don't have foot drop, and you haven't mentioned any leg pain. So there is no nerve to decompress to call a surgery a success.
Fusing to S1 has it's own set of ramifications. It changes the axis from your hips which were designed to bear your entire upper body weight to the disc above your fusion. So the disc at L4-5 will bear the brunt of all your weight which will eventually cause that disc to go. It can also play havoc on your SI joints.
It changes the way you sit, the way you walk and creates problems with balance.
Plus there is no guarantee you won't end up with more pain than you have now. You are already at a lower level of pain than most PM docs will even shoot for. I haven't seen anything lower than a 6 in the past 10 years. I've had 3 surgeries, 2 fusion's and the decompressions were all a success but not a single fusion grew and stabilized my spine. I broke the first set of hardware from the fusion of L3-4-5, the stress it put on the discs above and below ruptured 3 more discs. I went in to have my hardware replaced and woke 11 hours later fused from L1-S1.
I haven't been able to work since the last surgery and broke one of the new screws last summer. So that fusion has obviously failed or there wouldn't be stress on the hardware. Hardware is designed to hold things in place while the bone fuses and eventually becomes stronger than the hardware.
There is no concessus on the right way to do fusion. Posterior approach, posterior and anterior "global fusion," rods and screws, or BAK cages. Bone growth stimulators or not. Donor cadaver bone or harvested bone, Artificial disc replacement, I met one guy from FLA where they used coral. Although fusion's have been done for 30 years there is no concessus on the right way to do a fusion. Docs do it the way they learned and keep doing it the same way. Some like to try every new piece of hardware that hits the market although I doubt any of the hardware is FDA approved for the spine.
Both sets I have had implanted didn't have FDA approval for the spine. Pedicle screws are approved for use in the Femur, not the spine, so you sign a release to use hardware for off label purposes, making you a guinea pig. Or you become one of the people taking part in the clinical trials of whatever type of hardware the doc likes.
I take 150 mgs of meth a day plus another 90 to 120 mgs of instant release morphine. IF your not aware of the potency of meth my dose would equate to about 600mgs of long acting morphine per day plus the instant release. I was bedridden for 10 months and wasn't able to move the hospital bed out of my den until I reached a level of pain meds that most non CP patients would consider absurd.But the meds allow me to care for my daughter and home and do all the cooking, cleaning and shopping, I just have to rest every 10 minutes
My own Neuro surgeon calls my surgery a success, because the last flexion and extension X-rays he took things seemed in tact. They basically look for movement of hardware. So even though I couldn't walk, couldn't stand without support in the shower my doc called the last surgery a success. He doesn't even know his hardware has broken because of our disagreement about my condition. I say I'm in pain, and based on an Xray that doesn't tell you if the Donor bone is alive or growing or just dead and sitting there until it's reabsorbed he calls it a success.
I crunch and squeak with every step and can only stand for 15 minutes, sitting is a little better, I can sit for almost a half hour before sweat starts dripping from my nose. I have no feeling from my waist to my knees and have no other choice now, Besides medication for pain. Nobody would even try to redo a fusion for the 3rd time that stretches from L1-S1 unless a rod popped through my skin.
SO IMO, If your pain level is in the 3-4 range with a a couple percs a day and you can still work, you have no business in an OR or even considering a fusion.
Sure, some people benefit from fusion's and their fusion's grow and stabilize their spine. I'm what happens when it doesn't. Is it worth risking all this to please someone else about the number of pills you take?
I've never even met a surgeon that would operate without a neuropathic component to the problem that they can absolutely fix, they can relieve nerve compression but spine surgery to reduce back pain is crazy and anyone willing to operate promising relief of back pain is lying and looking to buy a new boat. My last surgeons bill was 34k and he wanted his hourly surgical rate to give a deposition to my attorney for Social security disability at the age of 34. It only took 2 years to win my case, we lost our home,I had a heart attack, lost a car, my marriage is wreck. How many years can you pay your mortgage without an income?
No doc is going to paint this picture, and you will have problems with friends and family about the meds. What came to your mind when I said I Take methadone?
The only thing lay people know about meth is that it's for heroin addicts and the only thing the know about morphine is that it's for cancer patients.
When it comes to pain management, there are aggressive docs out there but a 50% reduction in pain is considered a success. A 50% reduction puts me at about a 6, and I have experienced pain that others can't even imagine. No amount of morphine or Methadone or Fentanyl will give me back my life.
When you go under the knife you roll the dice and hope for the best. If it's your wife worried about 4 percs a day have her read this post and ask her if it's worth this kind of risk to try to live without meds.That choice was never offered to me until I was already a surgical mess that nobody would touch.
Welcome and good luck, Shore
Fusing to S1 has it's own set of ramifications. It changes the axis from your hips which were designed to bear your entire upper body weight to the disc above your fusion. So the disc at L4-5 will bear the brunt of all your weight which will eventually cause that disc to go. It can also play havoc on your SI joints.
It changes the way you sit, the way you walk and creates problems with balance.
Plus there is no guarantee you won't end up with more pain than you have now. You are already at a lower level of pain than most PM docs will even shoot for. I haven't seen anything lower than a 6 in the past 10 years. I've had 3 surgeries, 2 fusion's and the decompressions were all a success but not a single fusion grew and stabilized my spine. I broke the first set of hardware from the fusion of L3-4-5, the stress it put on the discs above and below ruptured 3 more discs. I went in to have my hardware replaced and woke 11 hours later fused from L1-S1.
I haven't been able to work since the last surgery and broke one of the new screws last summer. So that fusion has obviously failed or there wouldn't be stress on the hardware. Hardware is designed to hold things in place while the bone fuses and eventually becomes stronger than the hardware.
There is no concessus on the right way to do fusion. Posterior approach, posterior and anterior "global fusion," rods and screws, or BAK cages. Bone growth stimulators or not. Donor cadaver bone or harvested bone, Artificial disc replacement, I met one guy from FLA where they used coral. Although fusion's have been done for 30 years there is no concessus on the right way to do a fusion. Docs do it the way they learned and keep doing it the same way. Some like to try every new piece of hardware that hits the market although I doubt any of the hardware is FDA approved for the spine.
Both sets I have had implanted didn't have FDA approval for the spine. Pedicle screws are approved for use in the Femur, not the spine, so you sign a release to use hardware for off label purposes, making you a guinea pig. Or you become one of the people taking part in the clinical trials of whatever type of hardware the doc likes.
I take 150 mgs of meth a day plus another 90 to 120 mgs of instant release morphine. IF your not aware of the potency of meth my dose would equate to about 600mgs of long acting morphine per day plus the instant release. I was bedridden for 10 months and wasn't able to move the hospital bed out of my den until I reached a level of pain meds that most non CP patients would consider absurd.But the meds allow me to care for my daughter and home and do all the cooking, cleaning and shopping, I just have to rest every 10 minutes
My own Neuro surgeon calls my surgery a success, because the last flexion and extension X-rays he took things seemed in tact. They basically look for movement of hardware. So even though I couldn't walk, couldn't stand without support in the shower my doc called the last surgery a success. He doesn't even know his hardware has broken because of our disagreement about my condition. I say I'm in pain, and based on an Xray that doesn't tell you if the Donor bone is alive or growing or just dead and sitting there until it's reabsorbed he calls it a success.
I crunch and squeak with every step and can only stand for 15 minutes, sitting is a little better, I can sit for almost a half hour before sweat starts dripping from my nose. I have no feeling from my waist to my knees and have no other choice now, Besides medication for pain. Nobody would even try to redo a fusion for the 3rd time that stretches from L1-S1 unless a rod popped through my skin.
SO IMO, If your pain level is in the 3-4 range with a a couple percs a day and you can still work, you have no business in an OR or even considering a fusion.
Sure, some people benefit from fusion's and their fusion's grow and stabilize their spine. I'm what happens when it doesn't. Is it worth risking all this to please someone else about the number of pills you take?
I've never even met a surgeon that would operate without a neuropathic component to the problem that they can absolutely fix, they can relieve nerve compression but spine surgery to reduce back pain is crazy and anyone willing to operate promising relief of back pain is lying and looking to buy a new boat. My last surgeons bill was 34k and he wanted his hourly surgical rate to give a deposition to my attorney for Social security disability at the age of 34. It only took 2 years to win my case, we lost our home,I had a heart attack, lost a car, my marriage is wreck. How many years can you pay your mortgage without an income?
No doc is going to paint this picture, and you will have problems with friends and family about the meds. What came to your mind when I said I Take methadone?
The only thing lay people know about meth is that it's for heroin addicts and the only thing the know about morphine is that it's for cancer patients.
When it comes to pain management, there are aggressive docs out there but a 50% reduction in pain is considered a success. A 50% reduction puts me at about a 6, and I have experienced pain that others can't even imagine. No amount of morphine or Methadone or Fentanyl will give me back my life.
When you go under the knife you roll the dice and hope for the best. If it's your wife worried about 4 percs a day have her read this post and ask her if it's worth this kind of risk to try to live without meds.That choice was never offered to me until I was already a surgical mess that nobody would touch.
Welcome and good luck, Shore
carol632
12-30-2003, 02:33 PM
I agree with what has already been said. You should not have surgery or go off your pain meds just to please other people. If your doctor is comfortable with the pills you take, and they are working well for you, then I would tell my family they need to learn to deal with it, period! This is our bodies and we have the right to monitor ourselves in reguard to that. It is not unusual for people to be pressured about their meds...most people don't have the slightest understand of what CP is like. Maybe you could educate your wife by showing her some web sites that talk about chronic pain and how it effects you.
Good luck.
Carol
Good luck.
Carol
LIND
01-07-2004, 09:02 AM
hi all,
for the past year+ i have been on oxycodone 7.5 / 4-5 per day.
for most of the year even w/meds i was not getting enough pain relief to function.but, after numerous esi's,weight loss and pt.my pain has gone from a 9 to a 3-5 daily.it has only been about 3 months since ive "got my life back".im getting good relief from the meds and can work and more importantly spend quality time with my kids after work.but constantly get pressured from family to get off pain meds.i tapered down to just 2 a day for 2 weeks and i just couldnt do much but lay down by the time i got home from work.no problems with w/d's
just enough pain to make me miserable.i had originally planned to taper down and stop taking pain meds, just vioxx,but it didnt happen.after a couple of weeks i decided there was no point in suffering and went back to 4 per day and my wife has her husband back as do my children have a father.
my pain dr has told me that there is no problem being on meds for long term and that i could always have surgery but cant undo surgery.he is comfortable with where im at and doesnt push me for esi's as ive had 3 in the past 9 months.
a few months ago (when i was in constant agony)i had decided to find a surgeon to do the fusion L5-S1.it took months to get an appt w/ a very highly regarded ny surgeon and my consultation is coming up in a few weeks.i have decided not to have the surgery as im feeling ok w/pain meds.ive seen 2 sureons already and they all agree that if i cant take the pain (that was before
si's helped) i should go ahead and have the surgery. anyway i was just looking for advice.i dont see any reason to go and have another dr tell me what i already know and if i do go its just to make my family happy.
1)does anybody else get pressured to get off meds?
2)should i go see this surgeon althogh i have decided against surgery for now?
3)how long shoul i expect the relief from esi to last?
i would appreciate any responses..................scott
Scott,
I take vicodin 2 x a day. My husband is always on my case. I can't stand it...Obviously we take med's to help our pain. As long as you are not abusing the med's I don't see a problem with it especially if it helps you. If people only understood..They are lucky that they can lead a normal life . For some of us our med's have increased the quality of our life and allows to do our daily routines. It's okay for some people to have "their cocktails" everyday but we take our med's for our pain and hear comments. You know your body better than anyone. You taking med's is between your doctor and yourself. Like we don't have enough stress already...Good Luck... (sorry but I needed to vent)
LIND
for the past year+ i have been on oxycodone 7.5 / 4-5 per day.
for most of the year even w/meds i was not getting enough pain relief to function.but, after numerous esi's,weight loss and pt.my pain has gone from a 9 to a 3-5 daily.it has only been about 3 months since ive "got my life back".im getting good relief from the meds and can work and more importantly spend quality time with my kids after work.but constantly get pressured from family to get off pain meds.i tapered down to just 2 a day for 2 weeks and i just couldnt do much but lay down by the time i got home from work.no problems with w/d's
just enough pain to make me miserable.i had originally planned to taper down and stop taking pain meds, just vioxx,but it didnt happen.after a couple of weeks i decided there was no point in suffering and went back to 4 per day and my wife has her husband back as do my children have a father.
my pain dr has told me that there is no problem being on meds for long term and that i could always have surgery but cant undo surgery.he is comfortable with where im at and doesnt push me for esi's as ive had 3 in the past 9 months.
a few months ago (when i was in constant agony)i had decided to find a surgeon to do the fusion L5-S1.it took months to get an appt w/ a very highly regarded ny surgeon and my consultation is coming up in a few weeks.i have decided not to have the surgery as im feeling ok w/pain meds.ive seen 2 sureons already and they all agree that if i cant take the pain (that was before
si's helped) i should go ahead and have the surgery. anyway i was just looking for advice.i dont see any reason to go and have another dr tell me what i already know and if i do go its just to make my family happy.
1)does anybody else get pressured to get off meds?
2)should i go see this surgeon althogh i have decided against surgery for now?
3)how long shoul i expect the relief from esi to last?
i would appreciate any responses..................scott
Scott,
I take vicodin 2 x a day. My husband is always on my case. I can't stand it...Obviously we take med's to help our pain. As long as you are not abusing the med's I don't see a problem with it especially if it helps you. If people only understood..They are lucky that they can lead a normal life . For some of us our med's have increased the quality of our life and allows to do our daily routines. It's okay for some people to have "their cocktails" everyday but we take our med's for our pain and hear comments. You know your body better than anyone. You taking med's is between your doctor and yourself. Like we don't have enough stress already...Good Luck... (sorry but I needed to vent)
LIND
scotty12
01-07-2004, 09:51 AM
Scott,
I take vicodin 2 x a day. My husband is always on my case. I can't stand it...Obviously we take med's to help our pain. As long as you are not abusing the med's I don't see a problem with it especially if it helps you. If people only understood..They are lucky that they can lead a normal life . For some of us our med's have increased the quality of our life and allows to do our daily routines. It's okay for some people to have "their cocktails" everyday but we take our med's for our pain and hear comments. You know your body better than anyone. You taking med's is between your doctor and yourself. Like we don't have enough stress already...Good Luck... (sorry but I needed to vent)
LIND
Lind,
exactly.....some people act as though we asked for our pain.someone who has never lived with pain could not possibly understand that the meds give us the ability to lead a somewhat normal life............scott
I take vicodin 2 x a day. My husband is always on my case. I can't stand it...Obviously we take med's to help our pain. As long as you are not abusing the med's I don't see a problem with it especially if it helps you. If people only understood..They are lucky that they can lead a normal life . For some of us our med's have increased the quality of our life and allows to do our daily routines. It's okay for some people to have "their cocktails" everyday but we take our med's for our pain and hear comments. You know your body better than anyone. You taking med's is between your doctor and yourself. Like we don't have enough stress already...Good Luck... (sorry but I needed to vent)
LIND
Lind,
exactly.....some people act as though we asked for our pain.someone who has never lived with pain could not possibly understand that the meds give us the ability to lead a somewhat normal life............scott
StillWater
01-11-2004, 01:57 PM
I'm struggling with this. I've been seeing an orthped surgeon for about 3 years, had ESI's, pain meds, and finally he insisted a fusion was the only thing I could do. I got a second opinion which basically agreed, then got a 3rd opinion. The 3rd dr, NS, said that in my situation, a fusion will only make things worse, cause more instability in my spine and most likely not fuse. His opinion is that I need a laminectomy and facetectomy, if it as a point where the pain is greater than the risk. I don't know how to measure this. I really hate taking meds. I take 3000 mg Neurontin, and have vicodin and percodet, but almost never take them because i can't stand the side effects. I take nortriptilin at bedtime and darvocet, which does little, but helps a small amount. I take ambien at night. In the mornings, the pain is about a 9. As the day goes on, most days it is only 4 - 6 , and I just try to put up with it. By late afternoon it starts increasing and is worse again at night. Lying in hot water helps, but how long can you stay in the tub??? One foot is numb, and at the same time very painful. Sciatica in both legs. But, I really don't want surgery unless it's absolutely necessary , and I'm the only one who can say if the pain is too bad..... and I don't know how to judge that. The NS said the surgery would likely not help pain in the back, but hopefully would help pain in legs. He also warned me about (slight) possibilites of paralysis, etc. So, where does that leave me?
twisten
01-11-2004, 04:42 PM
I really can't say I've had any negative comments about being on pain killers. My husband and family have been very supportive. We just moved so I really don't have any friends here yet. When I was first placed on them I was very worried about my father's reaction. He doesn't like doctors at all and thinks even less of medications, especially pain killers. I don't think he has even taken a tylenol his whole life. But he seen the agony I was in before them and how much they have helped so he has been great. In fact I just spoke with him yesterday and he asked how I've been feeling. I told him I was pretty sore again and he said "Well, did you take your pills? They will help you." I was just floored, never thought I'd hear my dad say that. Anyway, just wanted to throw this in didn't mean to write a book!! Take care and hope to see more of your posts here.
pixiepoodle
01-12-2004, 03:38 PM
The only thing I can add to what has already been said is that to help others understand why you take such strong meds is to ask them to remember back to when they had a migraine headache, a severe tooth ache or some other injury or situation that cause them excruiating pain and then try to imagine living with that pain 24/7 for the rest of their lives. I tell them it gets old real quick and that it makes me wish I could die. Therefore, when I take my meds, I get relief which helps me get through each day.