Does anyone know or have a INTRATHECAL PAIN PUMP?

Posted by jolenekellner53 @jolenekellner53, Mar 18, 2019

I've been offered it for unrelenting pain after two spinal fusions at L4L5 (2nd successful we think). Sounds too good to be true. ANY AND ALL COMMENTS APPRECIATED. Thanks so much.. I'm 65 and pain has taken over my life. Nerve pain not the issue.

My husband had a Medtronic pump implanted at Mayo in 2016 for late-stage cancer pain involving pathologically fractured ribs. The medicine they chose for him was morphine. The surgery was terribly hard on him and was to be a simple outpatient procedure, but he spent 4 days in the hospital, unable to recover from the general anesthesia. The morphine gave him little if any relief and finding a practitioner outside of the Mayo network to manage the dosage was nearly impossible. His health declined rapidly after the surgery and he lived for less than two months after that. I deeply regret putting him through that and have nothing positive to say about his experience with the pump. I hope others are having better results. The concept is good, though, but it's not for everyone.

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I had one implanted about 2 weeks ago.
For reference I also have 2 Stim units implanted (6 surgeries – due to doctor issues and one due to mechanical failure).

This surgery was outpatient and was the least painful recovery than any of the other ones.

In 2 weeks I already love the unit. They titrate up slowly but it has already given me more stable relfief than the pills, stimulators, or medical cannabis ever did. Plus I don’t have to carry pills around or worry if I forgot them at home.

I’d be glad to talk more if you want. I’ve been fighting chronic pain (as a result of Lyme disease) for more than 10 years now. Tried many different things.

So far this is the best hands down.
Carl

Liked by julrice1

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The patient ambassador I talked to has had a Medtronic Pump for about 25 years and still loved it.

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@lisakuehl

My husband had a Medtronic pump implanted at Mayo in 2016 for late-stage cancer pain involving pathologically fractured ribs. The medicine they chose for him was morphine. The surgery was terribly hard on him and was to be a simple outpatient procedure, but he spent 4 days in the hospital, unable to recover from the general anesthesia. The morphine gave him little if any relief and finding a practitioner outside of the Mayo network to manage the dosage was nearly impossible. His health declined rapidly after the surgery and he lived for less than two months after that. I deeply regret putting him through that and have nothing positive to say about his experience with the pump. I hope others are having better results. The concept is good, though, but it's not for everyone.

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Lisa, so sorry for your loss. Why did they suggest a pump vs. Oral morphine? I had stage 4 esophageal cancer and used an opiate spray that helped manage the pain. Again, so sorry for your loss.

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We were told that the pump could deliver more effective medicine in much, much smaller amounts than oral opioids for the same amount of pain relief, with far fewer side effects. For my husband, it was a very bad choice, with no meaningful pain relief benefit and side effects worse than before the surgery. Thank you for your kind words. I am sure pumps help many people, but sadly my husband was not one of them.

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@cbrackle

I had one implanted about 2 weeks ago.
For reference I also have 2 Stim units implanted (6 surgeries – due to doctor issues and one due to mechanical failure).

This surgery was outpatient and was the least painful recovery than any of the other ones.

In 2 weeks I already love the unit. They titrate up slowly but it has already given me more stable relfief than the pills, stimulators, or medical cannabis ever did. Plus I don’t have to carry pills around or worry if I forgot them at home.

I’d be glad to talk more if you want. I’ve been fighting chronic pain (as a result of Lyme disease) for more than 10 years now. Tried many different things.

So far this is the best hands down.
Carl

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Thank you for the information. My 24 year old daughter is considering. Would you be willing to share what it looks like? I have not been able to find pictures of someone who has had one implanted. She’s very tall and thin. Afraid it’s too big for her.

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@julrice1

Thank you for the information. My 24 year old daughter is considering. Would you be willing to share what it looks like? I have not been able to find pictures of someone who has had one implanted. She’s very tall and thin. Afraid it’s too big for her.

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@julrice1
Hi, and welcome to Connect. I am not sure what they look like either or how it would work for your daughter. I can tell you that there is a discussion you might want to read where many people discuss the ins and outs of pain pumps. Perhaps one of those folks can answer your question. Here is the link:
https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
Also, did you do a search? I just now did a Google Images search on pain pumps that shows a lot of pictures of what they look like when implanted, here:
https://www.google.com/search?newwindow=1&safe=active&hl=en&tbm=isch&source=hp&biw=1254&bih=565&ei=AV7LX42ODIXl5gKg-L6oAw&q=pain+pump&oq=pain+pump&gs_lcp=CgNpbWcQAzICCAAyAggAMgIIADICCAAyAggAMgIIADICCAAyAggAMgIIADICCAA6BQgAELEDOggIABCxAxCDAVCTB1jRGWDNHGgBcAB4AIABb4gB-QaSAQM1LjSYAQCgAQGqAQtnd3Mtd2l6LWltZ7ABAA&sclient=img&ved=0ahUKEwjNkpeZzrbtAhWFslkKHSC8DzUQ4dUDCAc&uact=5
Good luck on finding answers. Best, Hank

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@jesfactsmon

@julrice1
Hi, and welcome to Connect. I am not sure what they look like either or how it would work for your daughter. I can tell you that there is a discussion you might want to read where many people discuss the ins and outs of pain pumps. Perhaps one of those folks can answer your question. Here is the link:
https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
Also, did you do a search? I just now did a Google Images search on pain pumps that shows a lot of pictures of what they look like when implanted, here:
https://www.google.com/search?newwindow=1&safe=active&hl=en&tbm=isch&source=hp&biw=1254&bih=565&ei=AV7LX42ODIXl5gKg-L6oAw&q=pain+pump&oq=pain+pump&gs_lcp=CgNpbWcQAzICCAAyAggAMgIIADICCAAyAggAMgIIADICCAAyAggAMgIIADICCAA6BQgAELEDOggIABCxAxCDAVCTB1jRGWDNHGgBcAB4AIABb4gB-QaSAQM1LjSYAQCgAQGqAQtnd3Mtd2l6LWltZ7ABAA&sclient=img&ved=0ahUKEwjNkpeZzrbtAhWFslkKHSC8DzUQ4dUDCAc&uact=5
Good luck on finding answers. Best, Hank

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My husband had one implanted at Mayo. He was quite thin at the time, so it was hard to hide it. But it was about the size of a small hockey puck and you could easily see it under his abdominal skin. The implant team will place it in the best location for each individual. I do have a photo if you are still looking for one.

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Hi, my son had a pain pump installed a couple of years ago. I'm a Florida/Southern gal and don't know the size of a hockey puck! But, sounds the same. The doc implanted it in his back at his waist, for comfort and not to see. I can't see it at all, but don't think that should be a problem, as it helps him so much. Bending over would cause him a problem if it were in front. They'll put it where she thinks is best.It has to be changed out annually. And, the pain doc cks the amount/strength and adds what he needs at visits. It has changed his life! 18 years of horrible pain, no relief from all the opiods and heavy drugs. Now, with the pain pump, medical cannibis and a few other drugs, he's able to go out and get groceries, take care of himself and his condo and dog, live a better, if still horribly limited life and will some pain still. ANd, the most important treatment now is Botox shots every 3 months. Botox is a true life-saver!!!

Liked by Hank

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@ess77

Hi, my son had a pain pump installed a couple of years ago. I'm a Florida/Southern gal and don't know the size of a hockey puck! But, sounds the same. The doc implanted it in his back at his waist, for comfort and not to see. I can't see it at all, but don't think that should be a problem, as it helps him so much. Bending over would cause him a problem if it were in front. They'll put it where she thinks is best.It has to be changed out annually. And, the pain doc cks the amount/strength and adds what he needs at visits. It has changed his life! 18 years of horrible pain, no relief from all the opiods and heavy drugs. Now, with the pain pump, medical cannibis and a few other drugs, he's able to go out and get groceries, take care of himself and his condo and dog, live a better, if still horribly limited life and will some pain still. ANd, the most important treatment now is Botox shots every 3 months. Botox is a true life-saver!!!

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Here is an image (drawing) showing a typical pain pump, inserted perhaps similarly to how your son's is installed. Hank

intrathecal-pump-pain-management-300x178

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@jesfactsmon

Here is an image (drawing) showing a typical pain pump, inserted perhaps similarly to how your son's is installed. Hank

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Yes, think that's it. I was concerned that the tubing caring the dulatid to his neck/shoulder travels the entire length of his spine. Not a problem, of course. It really has changed his life totally. He's 53, immigration lawyer, totally disabled for 18 years. It's been horried, pure hell for him and for me. He has dystonia, pain all over his body, all his muscles are contracting all the time, a live nerve firing from his neck to shoulder and down his arm, 24/7 – lost most of the use of his arm. The pump and botox allow him to use the computer, some. He's just changed his insurance coverage so Mayo neurology can see him . He must get in to see the movement disorder specialist, get all the testing and the best/newest treatment for him. Please add him to your prayers!

Liked by bustrbrwn22

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@lisakuehl

My husband had one implanted at Mayo. He was quite thin at the time, so it was hard to hide it. But it was about the size of a small hockey puck and you could easily see it under his abdominal skin. The implant team will place it in the best location for each individual. I do have a photo if you are still looking for one.

Jump to this post

I am looking for one in a real human. There are lots of pictures on line, but we want to see what it looks like implanted. If you are willing to post, it is greatly appreciated.

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intrathecal pain pump

Does anyone know if this pump can be implanted if you are pretty overweight and have a large abdomen?

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@candysmommy Welcome to Mayo Clinic Connect, a place to give and get support.

You will notice that I moved your question to a previous discussion related to intrathecal pain pump. I did this so you could connect with members like @ess77 @julrice1 @lisakuehl @jesfactsmon in a central location.

In order to better connect you with members, may I ask where you are in the process of obtaining a intrathecal pain pump and what is your condition regarding why a pain pump is needed?

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I have had many ablations and have been on opioids for years for debilitating severe osteoarthritis in all joints and bones in my body,my pain doctor suggested this as there is no way to continue to do these ablations and procedures to so many different areas with any success as they have done little to give me any quality of life and the oral pain meds do almost nothing after all of the years of being on them.

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