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Stephen
@wsh66

Posts: 195
Joined: Jan 31, 2018

Pain pump, I have one, how about one for you?

Posted by @wsh66, Fri, Nov 9 12:40pm

I have had an implanted pain pump in my abdomen for about 18 months. It is a miracle. I get a total of 4.764 mgs. of Dilaudid, If I administer all of the 10 extra micro does I can have in 24 hours. If I don't use those extra doses I get 2.74 mgs. over 24 hours. The effect is 300 times more effective than if I took the same dose orally. I go to my doctors office every 3 months to have the pump refilled. I'm there for about 15 minutes. The actual process of refilling the pump takes no more than 5 minutes and is painless. No prescriptions to worry about, no one wondering if I'm misusing or selling my pain meds, no one making me feel like a drug addict or a criminal. In our current climate this is even more important than it was two years ago. Many Doctors want nothing to do with pain patients or writing scripts for pain meds. I know many of you have been there. This method is especially good for back issues as the drug is delivered via a catheter which runs up my spin. Yes, I still have pain but it's pain I can live with. If your Doctor doesn't know about this or doesn't want to do it contact a pain clinic. The Doctor who put mine in is a Neurosurgeon. If you have any questions please respond.

Liked by jleem, lioness, Parus

REPLY

…hello, I suffer from chronic back and leg pain from sciatica and deg. discs and did not want to go the opiad route but what you sàid is interesting but has many questions.
How do you know if medication will help before putting in the pump and
You still face long term side effects from the meds and
How does the problem of needing to increase doses overtime than
Faced with an addiction …
Would you say this method is a last resort when all else fails?

You would have to test the meds orally before knowing how they will work. Dilaudid is powerful stuff, much more so than Morphine or Oxycontin. I'm not sure what long term side effects you're talking about. The dose is tiny. I have no problem with constipation. The does would never be enough to get you high so I wouldn't worry about addiction although my Doctor say if my pump failed, I would know it had failed because I would experience withdrawal. I not sure that I would. I gone off meds and had big big decreases in med overnight and never experienced withdrawal. Increased dose level. We turned my pump up several times to get the right dose but are not increasing it anymore. One thing you don't need to be concerned with is the fog that comes with high doses of opioids. Is this the last resort? If you have back issues that a surgeon cannot fix, if you are going to be in pain for the rest of your life, I would say this is the first choice. It was the last resort for me because I had done Thousands of hours of PT, I had taken many different drugs, narcotic and non narcotic and my back was too bad for surgery. I was taking the equivalent of 320 mgs. of oxycontin a day and getting little relief, my life was not really worth living. I was tested for the electrical stimulator and that was ruled out so the pump was the next step. I am not experiencing any side effects that I am aware of. My pump will have to be replaced approximately every 5 years. Who knows by the time I get the one it may be one that lasts forever. More questions? Just ask.

Thank you for sharing…your honesty means a great deal in learning the facts…

I got mine at MHealth, Mpls., Mn.

Awesome..thanks for the info. Do you have to fail the stimulator prior to getting the pump? Thanks:)

@jleem

Awesome..thanks for the info. Do you have to fail the stimulator prior to getting the pump? Thanks:)

Jump to this post

I guess it would depend on the doctor involved whether or not you need to fail with the pain stimulator prior to getting a pump. I was never tested for the kind of stimulators that you was now but I had used a TENS unit for a number of years a long time ago and had found it to not be very effective. I had also had a very bad skin reaction to the connectors which made it impossible for me to continue to use it. My back and the condition it was in made it pretty obvious that they weren't dealing with one compressed nerve, there were problems all over the place. I just had to be infection free for one year after having cancer and nearly dying from the treatment before they would let me have surgery to have the pump put in. I think there was also concerned about any open wounds with a stimulator and the possibility of infection. I hope this information helps. Love and blessings.

How did you come to finally have a pain pump? Can you tell me a little bit more about your pain, what kind it is, what caused it, what you tried before the pain pump. That sounds like a dream come true to me! I have really bad bone pain post to stem cell transplants and I am struggling to manage it on opiates.

I have had several back issues for many years. I suppose there is one diagnosis that would explain it all but that hasn't come my way. I had a disk removed 14 years ago after 10 years of pain. Not successful. The operation was to take 45 minutes. It took over 3 hours due to large amounts of scar tissue around my spin. No explanation for the scaring. In 2011 I had 3 vertebrae fused in my neck. Same situation. A 45 minute operation that took more than 3 hours because of scar tissue. That was successful. I also had carpel tunnel surgery, partially successful. I had a lot of pain in my hands and arms caused by repeated motions in my work as a glass artist. (See stephenhodder.com). Both of my feet are deformed and have also been a source of pain. I've had shoulder and knee surgery, both to relieve pain, both unsuccessful. My ability to walk is greatly limited by sciatica. I use a cane and/or a walker. Before the pump I also used a wheel chair. I also have arthritis.

I was treated with various opioids starting with 5 mg. Hydrocodon. I went off them and back on them etc. I was given Tramadol when it first hit the market. I tried nsaids, I use Celebrex, Tylenol, and lidocaine patches. I kept getting worse until I had to retire from most of my work in 2007 and then retire completely in 2011 from anything to do with glass. I was given morphine which was not effective. I was given larger and larger doses of Oxycontin and then Dilaudid was added along with Valium for cramping. It would work for awhile and then my deterioration would out pace the drugs. I had also tried Fentanyl patches which hadn't worked well for me. I was never given enough medication to completely end my pain and that is important. If you take enough to actually end your pain you run the risk of having some left in your system after your pain is gone. That's when the brain says. "Party time", and you get high. You get high, you get addicted. I also want to add at this point, no one over prescribed for me. Getting meds was like pulling teeth. I don't really believe everyone who says the Doctor got me addicted. I believe many of those who got a habit got it by misusing the drug they were given.

Throughout this time I was accused of being an addict. I was made to feel like a criminal. At one point one of the only Docs that would treat pain patients at my clinic was told they could no longer write for pain med. Most patients were left high and dry. I refused to accept that and said fine, get me another Doctor who will continue my treatment. Reluctantly they did. When that Doctor retired they got me another. On one hand there were doctors who tried their best to help me, on the other hand there was a system being put into play to make my treatment impossible.

Then came the cancer. A very rare and not well understood sarcoma. Driving was one of the hardest things for me to do and now I had to do a 2 hour round trip for radiation everyday for a month. My adult son just about carried me in to my last treatment. While being treated for sarcoma at the U of MN I learned about the Pain Management clinic and got started there. I met with a Psychiatrist and a Neurologist. We discussed the neurostimulator and the pain pump. Meanwhile they took over my meds. It was great. No one distrusted me, I was treated with respect, not that other doctors hadn't treated me well but none possessed their level of understanding. They raised my drug levels significantly and recognized that I would need treatment for the rest of my life. I should note that this clinic also makes determination that some patients can do without narcotics and helps them achieve that goal. My doctors decided the pain pump would be right for me but I couldn't get it right away. My cancer treatment nearly killed me and I kept ending up in the hospital with no immune system. I had already had radiation, surgery and some chemo. I had very large chemo doses but could never finish the course of treatment that was prescribed. I had to wait one year after my last infection to have the pain pump surgery. Part of the surgery involves running a catheter up your spine to leak the drug directly where the problem is and if an infection got into that catheter it would have been curtains for me.

I had my surgery in early 2016. By that time I was taking 200 mgs. of oxycontin and 32 mgs. of Dilaudid and 20 mgs. of valium daily and was still have severe pain. (32 mgs. of Dilaudid equals about another 100 mgs. of Oxycontin.) Over the 72 hours following surgery my oral meds were cut to 60 mgs. of Oxycontin and 16 mgs. of dilaudid and no valium. Shortly after that the oxycontin was reduced to 30 mgs. Recently I stopped taking the oxycontin on a regular basis. I still have the 16 mgs. of Dilaudid if I need it. My Doctor believe these small amounts of oral drugs have a very beneficial placebo effect and I am inclined to agree. I plan to give them up this year at least long enough to determine if they are still useful but they are in truth, miniscule doses compared to what the pump delivers.

In the months following my operation I saw my Surgeon regularly. The pump he placed in my abdomen was controlled by a remote that he had. It also recorded every dose I got. With each visit he turned it up a little more until it would not be prudent to turn it any higher. At too high a level you run the risk of flooding the sensors in your spin and rendering the meds useless. So now I have the pump inside my abdomen and the catheter running up my spine. I'm getting about 2.74 mgs. of Dilaudid every 24 hours plus I can give my self 10 "bumps" of about .01 mgs in 24 hours by holding a remote control over the pump and pressing a button. The pump records all these doses and when you took them which helps the Doctor know if he needs to turn the pump up more. Unless I'm up and walking or standing I don't experience much back pain. I sleep through the night most nights. My cancer treatment which appears to have been successful left me with severe neuropathy in my hands and feet. I take Amitriptyline and Lyrica for that as well as for leg pain caused by the compression garment I wear on my right let 23 hours per day. Part of my sarcoma treatment was the removal of 20 Lymph nods in my abdomen which now requires the compression along with daily massage to maintain good health. I've been back in the gym for over a year using a Nu-step machine which is a seated cross trainer. No load on the back. I also did a fairly aggressive course to PT after getting my pump. I did many courses of PT over the years along with anything else anyone could think of. Electro Sonograms, Rolfing, Craniosacral release, which by the way is just fantastic if you get someone who is properly trained in how to do it, trigger point release etc. etc. I did it all. You had to jump through all those hoops in order to get any meds at all which may or may not be a good thing. PT did help me, Cranial sacral release was a Godsend, other things, not so much.

Before the pain pump my life was not really worth living. I couldn't do any of the things I done for years like walking, dancing, bow hunting, fishing, blowing glass and gardening. I still don't do many of those things but I do still cook and play the guitar and sing. I was just starting to get professional work when I got cancer. After cancer I had to relearn everything about music and I don't know if I'll ever work again but I haven't given up. The neuropathy took the feeling in the ends of my fingers so I had to start over with the guitar. Exertion is hard as I lost a lung to the chemo treatments and the chronic pneumonia that came with the chemo.

Looking back at what I've written here it sounds like it's been one hell of a ride. But let's get real. At this moment I have no pain anywhere in my body. That will change as the day goes on but that's not in this moment. The fog that came with the high doses of oral meds is gone, I'm clear as a bell, an old bell but a bell none the less. I have more quality of life than I had in the 10 years before the pump. I go to my Doctor every 3 months for a pump refill. It takes all of 15 minutes in his office, the actual procedure is almost painless and take about 3 minutes. Every five years I will get a new pump but who knows, the next one might be good for the rest of my life. This is new technology and it's getting better everyday. My max dose is now about 4.674 mgs. per day if I take all 10 bumps which I never do. Meds taken with the pump are about 300 time more effective than taken orally. That the equivalent of 1400 mgs. of Dilaudid with non of the side effects. No drowsiness, no constipation that a little fiber and a good diet won't handle. If the pump fails, its default is to shut down in which case I would according to my doctor experience withdrawal and need to get to an emergency room. Big deal. Nothing is risk free. We choose to go on and live or we lay down and die. Clearly, I have made my choice.

I believe the pump is a good choice for anyone who will be in pain for the rest of their lives. Try everything else first if you must. If you can be fixed get fixed. If you can't, and other treatments don't work, consider the pump.

@wsh66

I have had several back issues for many years. I suppose there is one diagnosis that would explain it all but that hasn't come my way. I had a disk removed 14 years ago after 10 years of pain. Not successful. The operation was to take 45 minutes. It took over 3 hours due to large amounts of scar tissue around my spin. No explanation for the scaring. In 2011 I had 3 vertebrae fused in my neck. Same situation. A 45 minute operation that took more than 3 hours because of scar tissue. That was successful. I also had carpel tunnel surgery, partially successful. I had a lot of pain in my hands and arms caused by repeated motions in my work as a glass artist. (See stephenhodder.com). Both of my feet are deformed and have also been a source of pain. I've had shoulder and knee surgery, both to relieve pain, both unsuccessful. My ability to walk is greatly limited by sciatica. I use a cane and/or a walker. Before the pump I also used a wheel chair. I also have arthritis.

I was treated with various opioids starting with 5 mg. Hydrocodon. I went off them and back on them etc. I was given Tramadol when it first hit the market. I tried nsaids, I use Celebrex, Tylenol, and lidocaine patches. I kept getting worse until I had to retire from most of my work in 2007 and then retire completely in 2011 from anything to do with glass. I was given morphine which was not effective. I was given larger and larger doses of Oxycontin and then Dilaudid was added along with Valium for cramping. It would work for awhile and then my deterioration would out pace the drugs. I had also tried Fentanyl patches which hadn't worked well for me. I was never given enough medication to completely end my pain and that is important. If you take enough to actually end your pain you run the risk of having some left in your system after your pain is gone. That's when the brain says. "Party time", and you get high. You get high, you get addicted. I also want to add at this point, no one over prescribed for me. Getting meds was like pulling teeth. I don't really believe everyone who says the Doctor got me addicted. I believe many of those who got a habit got it by misusing the drug they were given.

Throughout this time I was accused of being an addict. I was made to feel like a criminal. At one point one of the only Docs that would treat pain patients at my clinic was told they could no longer write for pain med. Most patients were left high and dry. I refused to accept that and said fine, get me another Doctor who will continue my treatment. Reluctantly they did. When that Doctor retired they got me another. On one hand there were doctors who tried their best to help me, on the other hand there was a system being put into play to make my treatment impossible.

Then came the cancer. A very rare and not well understood sarcoma. Driving was one of the hardest things for me to do and now I had to do a 2 hour round trip for radiation everyday for a month. My adult son just about carried me in to my last treatment. While being treated for sarcoma at the U of MN I learned about the Pain Management clinic and got started there. I met with a Psychiatrist and a Neurologist. We discussed the neurostimulator and the pain pump. Meanwhile they took over my meds. It was great. No one distrusted me, I was treated with respect, not that other doctors hadn't treated me well but none possessed their level of understanding. They raised my drug levels significantly and recognized that I would need treatment for the rest of my life. I should note that this clinic also makes determination that some patients can do without narcotics and helps them achieve that goal. My doctors decided the pain pump would be right for me but I couldn't get it right away. My cancer treatment nearly killed me and I kept ending up in the hospital with no immune system. I had already had radiation, surgery and some chemo. I had very large chemo doses but could never finish the course of treatment that was prescribed. I had to wait one year after my last infection to have the pain pump surgery. Part of the surgery involves running a catheter up your spine to leak the drug directly where the problem is and if an infection got into that catheter it would have been curtains for me.

I had my surgery in early 2016. By that time I was taking 200 mgs. of oxycontin and 32 mgs. of Dilaudid and 20 mgs. of valium daily and was still have severe pain. (32 mgs. of Dilaudid equals about another 100 mgs. of Oxycontin.) Over the 72 hours following surgery my oral meds were cut to 60 mgs. of Oxycontin and 16 mgs. of dilaudid and no valium. Shortly after that the oxycontin was reduced to 30 mgs. Recently I stopped taking the oxycontin on a regular basis. I still have the 16 mgs. of Dilaudid if I need it. My Doctor believe these small amounts of oral drugs have a very beneficial placebo effect and I am inclined to agree. I plan to give them up this year at least long enough to determine if they are still useful but they are in truth, miniscule doses compared to what the pump delivers.

In the months following my operation I saw my Surgeon regularly. The pump he placed in my abdomen was controlled by a remote that he had. It also recorded every dose I got. With each visit he turned it up a little more until it would not be prudent to turn it any higher. At too high a level you run the risk of flooding the sensors in your spin and rendering the meds useless. So now I have the pump inside my abdomen and the catheter running up my spine. I'm getting about 2.74 mgs. of Dilaudid every 24 hours plus I can give my self 10 "bumps" of about .01 mgs in 24 hours by holding a remote control over the pump and pressing a button. The pump records all these doses and when you took them which helps the Doctor know if he needs to turn the pump up more. Unless I'm up and walking or standing I don't experience much back pain. I sleep through the night most nights. My cancer treatment which appears to have been successful left me with severe neuropathy in my hands and feet. I take Amitriptyline and Lyrica for that as well as for leg pain caused by the compression garment I wear on my right let 23 hours per day. Part of my sarcoma treatment was the removal of 20 Lymph nods in my abdomen which now requires the compression along with daily massage to maintain good health. I've been back in the gym for over a year using a Nu-step machine which is a seated cross trainer. No load on the back. I also did a fairly aggressive course to PT after getting my pump. I did many courses of PT over the years along with anything else anyone could think of. Electro Sonograms, Rolfing, Craniosacral release, which by the way is just fantastic if you get someone who is properly trained in how to do it, trigger point release etc. etc. I did it all. You had to jump through all those hoops in order to get any meds at all which may or may not be a good thing. PT did help me, Cranial sacral release was a Godsend, other things, not so much.

Before the pain pump my life was not really worth living. I couldn't do any of the things I done for years like walking, dancing, bow hunting, fishing, blowing glass and gardening. I still don't do many of those things but I do still cook and play the guitar and sing. I was just starting to get professional work when I got cancer. After cancer I had to relearn everything about music and I don't know if I'll ever work again but I haven't given up. The neuropathy took the feeling in the ends of my fingers so I had to start over with the guitar. Exertion is hard as I lost a lung to the chemo treatments and the chronic pneumonia that came with the chemo.

Looking back at what I've written here it sounds like it's been one hell of a ride. But let's get real. At this moment I have no pain anywhere in my body. That will change as the day goes on but that's not in this moment. The fog that came with the high doses of oral meds is gone, I'm clear as a bell, an old bell but a bell none the less. I have more quality of life than I had in the 10 years before the pump. I go to my Doctor every 3 months for a pump refill. It takes all of 15 minutes in his office, the actual procedure is almost painless and take about 3 minutes. Every five years I will get a new pump but who knows, the next one might be good for the rest of my life. This is new technology and it's getting better everyday. My max dose is now about 4.674 mgs. per day if I take all 10 bumps which I never do. Meds taken with the pump are about 300 time more effective than taken orally. That the equivalent of 1400 mgs. of Dilaudid with non of the side effects. No drowsiness, no constipation that a little fiber and a good diet won't handle. If the pump fails, its default is to shut down in which case I would according to my doctor experience withdrawal and need to get to an emergency room. Big deal. Nothing is risk free. We choose to go on and live or we lay down and die. Clearly, I have made my choice.

I believe the pump is a good choice for anyone who will be in pain for the rest of their lives. Try everything else first if you must. If you can be fixed get fixed. If you can't, and other treatments don't work, consider the pump.

Jump to this post

@wsh66
You have certainly been through the ringer!
I admire your strength and determination.
I pray for your good health.
Ronnie (GRANDMAr)

@wsh66

I have had several back issues for many years. I suppose there is one diagnosis that would explain it all but that hasn't come my way. I had a disk removed 14 years ago after 10 years of pain. Not successful. The operation was to take 45 minutes. It took over 3 hours due to large amounts of scar tissue around my spin. No explanation for the scaring. In 2011 I had 3 vertebrae fused in my neck. Same situation. A 45 minute operation that took more than 3 hours because of scar tissue. That was successful. I also had carpel tunnel surgery, partially successful. I had a lot of pain in my hands and arms caused by repeated motions in my work as a glass artist. (See stephenhodder.com). Both of my feet are deformed and have also been a source of pain. I've had shoulder and knee surgery, both to relieve pain, both unsuccessful. My ability to walk is greatly limited by sciatica. I use a cane and/or a walker. Before the pump I also used a wheel chair. I also have arthritis.

I was treated with various opioids starting with 5 mg. Hydrocodon. I went off them and back on them etc. I was given Tramadol when it first hit the market. I tried nsaids, I use Celebrex, Tylenol, and lidocaine patches. I kept getting worse until I had to retire from most of my work in 2007 and then retire completely in 2011 from anything to do with glass. I was given morphine which was not effective. I was given larger and larger doses of Oxycontin and then Dilaudid was added along with Valium for cramping. It would work for awhile and then my deterioration would out pace the drugs. I had also tried Fentanyl patches which hadn't worked well for me. I was never given enough medication to completely end my pain and that is important. If you take enough to actually end your pain you run the risk of having some left in your system after your pain is gone. That's when the brain says. "Party time", and you get high. You get high, you get addicted. I also want to add at this point, no one over prescribed for me. Getting meds was like pulling teeth. I don't really believe everyone who says the Doctor got me addicted. I believe many of those who got a habit got it by misusing the drug they were given.

Throughout this time I was accused of being an addict. I was made to feel like a criminal. At one point one of the only Docs that would treat pain patients at my clinic was told they could no longer write for pain med. Most patients were left high and dry. I refused to accept that and said fine, get me another Doctor who will continue my treatment. Reluctantly they did. When that Doctor retired they got me another. On one hand there were doctors who tried their best to help me, on the other hand there was a system being put into play to make my treatment impossible.

Then came the cancer. A very rare and not well understood sarcoma. Driving was one of the hardest things for me to do and now I had to do a 2 hour round trip for radiation everyday for a month. My adult son just about carried me in to my last treatment. While being treated for sarcoma at the U of MN I learned about the Pain Management clinic and got started there. I met with a Psychiatrist and a Neurologist. We discussed the neurostimulator and the pain pump. Meanwhile they took over my meds. It was great. No one distrusted me, I was treated with respect, not that other doctors hadn't treated me well but none possessed their level of understanding. They raised my drug levels significantly and recognized that I would need treatment for the rest of my life. I should note that this clinic also makes determination that some patients can do without narcotics and helps them achieve that goal. My doctors decided the pain pump would be right for me but I couldn't get it right away. My cancer treatment nearly killed me and I kept ending up in the hospital with no immune system. I had already had radiation, surgery and some chemo. I had very large chemo doses but could never finish the course of treatment that was prescribed. I had to wait one year after my last infection to have the pain pump surgery. Part of the surgery involves running a catheter up your spine to leak the drug directly where the problem is and if an infection got into that catheter it would have been curtains for me.

I had my surgery in early 2016. By that time I was taking 200 mgs. of oxycontin and 32 mgs. of Dilaudid and 20 mgs. of valium daily and was still have severe pain. (32 mgs. of Dilaudid equals about another 100 mgs. of Oxycontin.) Over the 72 hours following surgery my oral meds were cut to 60 mgs. of Oxycontin and 16 mgs. of dilaudid and no valium. Shortly after that the oxycontin was reduced to 30 mgs. Recently I stopped taking the oxycontin on a regular basis. I still have the 16 mgs. of Dilaudid if I need it. My Doctor believe these small amounts of oral drugs have a very beneficial placebo effect and I am inclined to agree. I plan to give them up this year at least long enough to determine if they are still useful but they are in truth, miniscule doses compared to what the pump delivers.

In the months following my operation I saw my Surgeon regularly. The pump he placed in my abdomen was controlled by a remote that he had. It also recorded every dose I got. With each visit he turned it up a little more until it would not be prudent to turn it any higher. At too high a level you run the risk of flooding the sensors in your spin and rendering the meds useless. So now I have the pump inside my abdomen and the catheter running up my spine. I'm getting about 2.74 mgs. of Dilaudid every 24 hours plus I can give my self 10 "bumps" of about .01 mgs in 24 hours by holding a remote control over the pump and pressing a button. The pump records all these doses and when you took them which helps the Doctor know if he needs to turn the pump up more. Unless I'm up and walking or standing I don't experience much back pain. I sleep through the night most nights. My cancer treatment which appears to have been successful left me with severe neuropathy in my hands and feet. I take Amitriptyline and Lyrica for that as well as for leg pain caused by the compression garment I wear on my right let 23 hours per day. Part of my sarcoma treatment was the removal of 20 Lymph nods in my abdomen which now requires the compression along with daily massage to maintain good health. I've been back in the gym for over a year using a Nu-step machine which is a seated cross trainer. No load on the back. I also did a fairly aggressive course to PT after getting my pump. I did many courses of PT over the years along with anything else anyone could think of. Electro Sonograms, Rolfing, Craniosacral release, which by the way is just fantastic if you get someone who is properly trained in how to do it, trigger point release etc. etc. I did it all. You had to jump through all those hoops in order to get any meds at all which may or may not be a good thing. PT did help me, Cranial sacral release was a Godsend, other things, not so much.

Before the pain pump my life was not really worth living. I couldn't do any of the things I done for years like walking, dancing, bow hunting, fishing, blowing glass and gardening. I still don't do many of those things but I do still cook and play the guitar and sing. I was just starting to get professional work when I got cancer. After cancer I had to relearn everything about music and I don't know if I'll ever work again but I haven't given up. The neuropathy took the feeling in the ends of my fingers so I had to start over with the guitar. Exertion is hard as I lost a lung to the chemo treatments and the chronic pneumonia that came with the chemo.

Looking back at what I've written here it sounds like it's been one hell of a ride. But let's get real. At this moment I have no pain anywhere in my body. That will change as the day goes on but that's not in this moment. The fog that came with the high doses of oral meds is gone, I'm clear as a bell, an old bell but a bell none the less. I have more quality of life than I had in the 10 years before the pump. I go to my Doctor every 3 months for a pump refill. It takes all of 15 minutes in his office, the actual procedure is almost painless and take about 3 minutes. Every five years I will get a new pump but who knows, the next one might be good for the rest of my life. This is new technology and it's getting better everyday. My max dose is now about 4.674 mgs. per day if I take all 10 bumps which I never do. Meds taken with the pump are about 300 time more effective than taken orally. That the equivalent of 1400 mgs. of Dilaudid with non of the side effects. No drowsiness, no constipation that a little fiber and a good diet won't handle. If the pump fails, its default is to shut down in which case I would according to my doctor experience withdrawal and need to get to an emergency room. Big deal. Nothing is risk free. We choose to go on and live or we lay down and die. Clearly, I have made my choice.

I believe the pump is a good choice for anyone who will be in pain for the rest of their lives. Try everything else first if you must. If you can be fixed get fixed. If you can't, and other treatments don't work, consider the pump.

Jump to this post

What a journey. Thank you for taking the time to share all of the details. So happy you found a solution. It’s encouraging! In trying to understand how the pain pump works, you mentioned that it goes in your spine. Is that because that is where your pain is or is that because you’re it’s is where the nerve is all originate? I expect to be a chronic pain patient for the rest of my life, this sounds like a Incredible solution.

Liked by rsnowflake

The pump is on the left side of my abdomen just above my belt. The catheter runs up along my spin so the meds can get to the nerve without having to pass through my digestive system. It covers all sources of pain associated with the nerves that originate from the spinal cord. It is considered to be a systemic solution to all sources of pain. However I still have to deal with the pain from neuropathy and pain caused by my compression garments as well as the stiffness caused by arthritis. Another long term solution to pain may be Lyrica and Amitriptyline. I spoke with a Doctor recently who thought the combination of those two drugs might be a solution for some pain patients. The pump is an incredible solution. It is alo surgery. They open you up from the front and run a catheter up your spine. I would exhaust all the fix your back solutions before going to the pump. If you are going to use narcotics the pump is the way to take them. You can't abuse the drugs you get that way. You can't overdose. You can't sell them. All the things that scare Doctors about prescribing these drugs go away. Where are you located?

@grandmar

@wsh66
You have certainly been through the ringer!
I admire your strength and determination.
I pray for your good health.
Ronnie (GRANDMAr)

Jump to this post

Thank you.

@grandmar

@wsh66
You have certainly been through the ringer!
I admire your strength and determination.
I pray for your good health.
Ronnie (GRANDMAr)

Jump to this post

Thanks you for encouragement and prayers!

@ckeys

What a journey. Thank you for taking the time to share all of the details. So happy you found a solution. It’s encouraging! In trying to understand how the pain pump works, you mentioned that it goes in your spine. Is that because that is where your pain is or is that because you’re it’s is where the nerve is all originate? I expect to be a chronic pain patient for the rest of my life, this sounds like a Incredible solution.

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I actually got a spinal implant. I have a rare disorder where my brain sends pain throughout my body part is broken. I started with medication and nerve blockers, you need to get these first steps to show they don't work then they'll do a implant. 2 titanium s were put on my c2 vertabre. Then the put a small electromagnetic implant in my behind….lol.
Then I have an ipod then I control the pain with the ipod. It connects to they what looks like a pace maker. It is easy 2 use and it's nice to know that I control my pain.
I hope this helps even if one thing works…BUY THE BOOK!!! HOPE something helps. Feel free to write back…even if it's just for support!

I apologize for the length of my post, but I have had a lot of problems after having a L5-S1 laminectomy, in 2012. I still don't know everything that the doctor did wrong, but he put a screw in the nerve root and moved it to another place during surgery. I felt like someone had put a golf ball coated in broken glass and left it in in my rectum. Every movement exacerbated the pain, but doctors in my area acted like I had the plague. I went to Baylor in TX, because an ER nurse at the local hospital said they had good neurosurgeons. I saw Dr. Daniel Kim, who looked at the MRI disc and said I had the "wrong kind" of surgery. He left the room and did not return. The physician assistant came in to tell me I needed to have an EMG test and spinal cord stimulator trial. I left and did not return. I went to Vanderbilt, which was a waste of time. I went to Mayo in FL, which is where I learned about the screw being put in the nerve root. Another screw was close to the S1 nerve, but the neurosurgeon would not remove it. They set me up with a neurologist, but the appointment was six months away, even though I live eight hours away. I went to other neurologists, which was a waste of time. I had been sent to pain management, by my primary care doctor. The opioid medication made it possible for me to barely function, but I still had a lot of uncontrolled pain. I went there until the facility stopped prescribing pain medication, to any of the patients, and started giving injections, only. A neurosurgeon told me I needed a tethered cord surgery before he could do an ALIF surgery to stabilize my spine. I did not believe him, because he would not answer my questions, but my family (and I) were afraid no one else would operate. (I had been to four or five neurosurgeons that did not want anything to do with me). After the surgeries I was no better. My pelvis tilted because of the surgeries and I had to have hip replacement. It was done incorrectly, but again no one wanted to help. It took two years to find a doctor that told me the truth, which was that the implant had been put in too steep. By this time, I was having to sleep in a recliner, because my hip would slide out of place, in bed, and I would wake up in so much pain that I could hardly get out of bed, which was necessary for me to work my hip around so it would stop hurting. The ortho. surgeon did a revision surgery and fixed my hip. I had been going to Comprehensive Pain Specialists, in Oak Ridge, TN for pain mgmt. The doctor did a trial injection, at L5-S1 I think, for a pain pump. He used Fentanyl, which took away all my pain, within minutes. I was sent to a surgeon to discuss pump implantation, but he acted really strange and said the pump would show through my clothing (like I cared). I went back to the pain facility, where the doctor acted strange and started talking about a spinal cord stimulator, for some unknown reason. Within a month he was gone and by the way everyone was acting, he had gotten fired. (I recently learned that he paralyzed two women, while doing some procedure). I was told to go to another CPS location, in Knoxville, if I wanted a pain pump. I went and was not able to see the doctor. The nurse practitioner was hateful and acted like I had done something wrong, but I was taking my medication as prescribed and had passed all the drug tests. It was strange that the other location, in Oak Ridge, had done urine drug screens almost every month, but the one in Knoxville did not do any. I finally asked for my records, but they were not sent. I was told that I had to get them from the corporate office in Gallatin, TN. It took them almost three months to send the records. I knew something had to be going on, by this time. Sure enough the nurse practitioner had put in the records that I was short of pills one month. (An unidentified person always counted the pills across the room. I knew I had the right amount and assumed that they agreed since they did not say anything). There were statements making me sound like a complete moron and drug seeker. I think this was because a doctor that is a friend of the first back surgeon had started working at CPS. (The records from the first pain management facility were honest and had nothing bad). The nurse practitioner kept telling me that she was doing everything possible to make my insurance company approve the pain pump. I called them and learned that she had not even sent my paperwork, or a request, for a pain pump. All the CPS offices are now closed in TN and there are lawsuits against the CEO. Thankfully my PCP sent me to a new pain management doctor, but they would not increase my medication. They did a myelogram that showed clumping of nerve roots. I had asked for this test after the L5-S1 surgery, but I had gone to the back surgeon's friend that went to CPS (I live in a small town with unethical doctors) and I was told that it would be dangerous for me to have the test. He did not want me to find out that I had lacerated nerves. I was not referred back to the interventional pain doctor that had ordered the myelogram, but to a nurse practitioner. He was extremely nice and went over the myelogram, but he did not tell me that clumping meant arachnoiditis. I had severe stenosis at L3-L4 and he wanted to send me to another neurosurgeon in the group. He said this one operated on people with previous surgeries. In order for me to be able to see the neurosurgeon, I had to sign a release for them to have the records from CPS. I should not have done this, because the nice NP returned to his former job and I was treated like complete crap after they saw the records. There were a few places that the lies contradicted themselves, such as when the NP had said she told "them and they" that "they" were short of pills, but after I had read the records and confronted the nurse practitioner, she documented that she went back and looked at the office visit and "the husband was not with her". My husband always went with me and this was clear because she had originally documented that she told "they and them". I pointed the errors out to the doctor and he said he had never seen anything like it before. I made sure that he noticed that they had not done any drug screens, during the year that I had gone to the CPS location, in Knoxville. This would never happen under normal circumstances at a pain mgmt. clinic in TN. The doctor still treated me terribly, although he knew I was telling the truth. I went to Emory and saw a neurosurgeon about having surgery for L3-L4 stenosis. He said he would put in a SCS at the same time of surgery, when I made an extra trip to ask more questions about the rectal pain that is still so bad. I do not want a SCS, because my first pain mgmt. doctor told me a pain pump would be a better option for someone with nerve root clumping, however, it is difficult to find someone near my home that maintains them. I went to Charlotte, to see a neurosurgeon, but I had to delay surgery after riding an exercise bicycle and inflaming the sacral nerve roots. The neurosurgeon told me that I had not had a tethered cord, meaning the surgery was bogus. The pain mgmt. nurse practitioner put comments in my records, making it sound like I was trying to avoid surgery to take pain pills. This was not true. The surgery was for stenosis and was not supposed to help the rectal pain. The nice nurse practitioner had changed my medication from oxycodone to fifty microgram fentanyl patches and they had never worked as well as the oxycodone. The neurosurgeon at Carolina Neurosurgery and a pain management doctor that I saw in Charlotte (just to see what he would say—it is a four hour drive from my house to Charlotte) said I should ask for something for breakthrough pain. I mentioned this to the NP, but she said she did not prescribe both short and long acting medications at the same time, which was a lie. She suggested that I take morphine and said it might work better. Although she said she would write a prescription for the same morphine equivalents, she wrote the prescription for ninety morphine equivalents, which was thirty milligrams less than what I was taking. She had not given the script to me, as she had done in the past, she gave it to the lady at the check out desk. She had sent me to wait in another office that was setting up a new MRI. When I got the order, which was for a MRI of my pelvis, it was without contrast. My previous imaging had been done with and without contrast. This was especially weird because she had ordered a cervical MRI with and without contrast. It seemed that she did not want any problems with my sacral nerves to show up. My older imaging reports said there is abnormal edema and atrophy in the sacral ala, and that this could mean denervation or a muscle tear. It is denervation, because I have severe atrophy and weakness in my lower extremities (something that the many doctors I have seen always want to overlook and not talk about). I did not have the MRI, after I saw that she had lowered my dose of medication. The Walgreens pharmacy that I use did not stock the type of morphine (Arymo) that the NP had wrote the script for. I took the script to a pharmacy near the pain mgmt. facility. The pharmacist said it was dangerous to lower my dose that much, after I told him what my problems were and how much pain I have. He offered to call the NP, which was concerning, but I said OK. The phone nurse called and let me have it. She said the pharmacist was not the pain management doctor. I was really scared and asked my PCP to send me to another pain management doctor. There was another reason for me to be scared. I had gotten a ganglion impar injection by the pain mgmt. doctor and it had caused my pain to worsen. I had called the doctor, but was told that he was on vacation and I would have to go to the ER, in a very hateful threatening tone. I went and was given a dilaudid injection and steroids. I was afraid they could dismiss me because of the dilaudid injection. Fortunately, I received a call from the new pain management office and did not have to send records from this place. The new doctor spent over two hours with me and said he did not know who had been prescribing my pain medication, but they must not have read my records. He doubled my pain medication. (My pain had gotten so bad that I could not do anything and I was crying all the time). I went back to Carolina Neurosurgery, but the neurosurgeon was on a three week vacation. I was told that I could suffer motor nerve loss and have worse bowel and bladder problems if I waited that long to have surgery, and that they would have someone else do the surgery. I only saw the new neurosurgeon for a few minutes, lying on a stretcher in the hospital, but he disagreed with his colleague and said it was possible for the surgery to help the rectal pain. I had the surgery and it miraculously got rid of the rectal pain. It caused my right leg to be weaker and the symptoms of drop foot to be worse, however, and I fell three weeks after the surgery was done, after my toes drug on the floor. By the next day the rectal pain was back. The neurosurgeon told me that he did not know why the pain was gone, which was a complete turnaround from what he had first said. I figured it had something to do with scarred nerves from the first back surgery and he did not want to discuss this. A neurologist told me that something had to fall on a nerve for the pain to return. He was going to order a pelvic MRI with protocols to show the nerves, but my insurance company wanted X Rays first. I had them done, but have not heard anything back from the neurologist. I had another trial injection for a pain pump by the new doctor. He used hydromorphone, but he did the injection at L3-4. It did not help, even though the nurse said the medication would gravitate down to the L5-S1 nerves. I had a consultation with a new neurosurgeon because I wanted to ask about arachnoiditis and cauda equina syndrome. I had read in the records from Carolina that I have progressive chronic cauda equina syndrome, and the neurosurgeon had said that nerve root clumping meant arachnoiditis, at the last appointment. The new neurosurgeon said that because of the arachnoiditis the medication would not gravitate down, which was why the trial did not work. He also said that the tethered cord surgery caused the arachnoiditis. I am having another trial next week and the doctor is going to use fentanyl, because I told them about the first trial. If he does it at the same place it will not work. I think he may have said he did not want to do it at L5-S1 because of the nerves, but the rep was saying something and I did not hear everything the doctor said. I will be so upset if he doesn't do the trial at L5-S1. I have read an article about opioid intolerance and I am afraid this could be why my pain medication is not working. I fell again on concrete and landed hard on my pelvis. The pain medication stopped controlling the rectal pain after the fall. The area constantly aches and burns. I use jar after jar of biofreeze cream, because of the menthol effect, but it doesn't stop the pain. I am very frightened for my future. Have you heard of anyone else that has rectal pain from nerve injury at L5-S1?

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