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.

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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I have had one for over twenty one years with a few problems that go with having one, but let me say that it was the only thing that helped me I have tried shots a spinal cord stimulator and that didn’t work so they did trial injections too see if that would work and it did, but let me worn anyone getting this it comes with it’s own problems first and most is constipation it’s been a problem from the beginning also for men you will probably need testosterone I have been on shots for over twenty years, but the worst is yet to come after 21 years I have a problem with my pump in February I woke up thinking my back had gone out after a few hours I called the nurse who did my pump for the last 10 years she had me come right in check my pump bye bye the way it was just replaced just before the pandemic started for the fifth time will come back to that a little later she checked it and said that it was okay and increased 10 per cent it helped but I was not where I had been so I keep telling them something was wrong so in late April they finally did a study to see what the problem was these pump have two ports one to fill but the second one they should be able to get fluid from they can use dye in it but I am allergic to it so they didn’t do that part so I go to the surgeon to get it done it took until May 26 before he did it in the meantime he wanted my cardiologist okay so now I have a stress test and failed so they want a heart catheterization they found that I had five arteries four were 100 percent blocked that my arthritis but that a story for a different time the doctor who did the procedure wanted to do something right then but talk with my cardiologist and they said fixing the pump and getting my pain under control was more important so they let me have the surgery but what none of knew was what the doctor who controls what goes in and how much planed to change it from what I have been on for 21 years it went from 15 mg pre milliliter Dialaudid set at 7.559 per day to 1mg per milliliter set at .0002 so it goes that is what I am dealing right now I have gone through drug withdrawals I got so sick I told my wife to put my gun away because I new what was coming and it was worse than I thought 7 days of vomiting and well you can guess what else you would think that would be the worst part but its not after making through all of that the pain has come back at first it wasn’t that bad but now I have not been able to sleep more than a hour the pain is so bad and my pain doctor is on vacation until the 5 of July so please make sure that you talk with the doctors who will be taking care of you and that you stay informed at all times because I did have one that the catheter had broken and when the surgeon was replacing the pump because it was time he found that the pump pocket was filled with something so he sent some to the lab clean up the rest put the new pump in and set me home so I am now looking for a new doctor to take care of me just ask a lot of questions and don’t take anything from them you are the only person that know what you are dealing and living with be you on advocate make some noise when they don’t listen.

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@candysmommy

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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Yes they can a little known thing is that that would probably help you because they make two different ones a 20ml and a 40 ml the batteries have come a long way from my first the pump is almost half the size it was when I got my first one so yes you should be able with out anymore problems the only thing is the girdle they put on you after surgery it’s only two weeks and if the pump is working you should be feeling better before you leave the hospital good luck

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Just saw your comment. Hopefully someone will benefit from what I write. I have had an intrathecal pain pump since 2005 and currently on my 5th pump. Four of the pumps have been Medtronic and one was a Flonic intrathecal pain pump. Sadly the Flonic pump malfunctioned after 4 weeks and had to quickly be removed. The Dr that implanted the flonic pump said that programming each month was a nightmare requiring much time. I get my pump filled 1 time a month and has a mixture of 4 different pain meds, i.e., fentanyl, morphine, baclifin, colonidine and puvicane. Sorry about the mistakes in spelling of the meds. Before you make a decision about a pump know this, it WILL NOT take away all your pain, it will help you to deal with it better. You have to change your lifestyle by eating better, losing weight, exercise, boy I sound like a dr here, I'm not. Yes I have had the catheter block twice and be replaced. I overdosed twice because of the pumps but think of this, your not taking any oral pain meds anymore. I also have a medtronic pain stimulator as well and on my second device. Nothing is going to completely take away all of your pain. Would I do it again, yes I would because the two devices give me tools to get me through the day, everyday. One comment I do have to say is that all intrathecal device reps need to educate er rooms on what you have implemented in your body because the 2 times I overdosed the er departments treated me as if I was a drug addict even after they were made aware of the device.

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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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Get a 20 ml device not a 40.

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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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I have an intrathecal pump with dilauded for intractable trigeminal neuralgia
I had two brain surgeries and radiation in the brain that lasted only eight months. The pump is giving me relief and I can speak ( I had lost the ability to speak due to the severe facial spasms
The pain is now what I call livable, I mean I can live with it.
My neurosurgeon and neurologist are doctors at Baylor College of Medicine in Houston. You probably need to research first and find the best doctors where you live
The pump is not super easy
It has cause my abdomen to be enlarged and I have to wear bigger pants or just dresses but who cares when I am not feeling I want to rip my face off right?
Good luck with all my heart!

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@bob57

Just saw your comment. Hopefully someone will benefit from what I write. I have had an intrathecal pain pump since 2005 and currently on my 5th pump. Four of the pumps have been Medtronic and one was a Flonic intrathecal pain pump. Sadly the Flonic pump malfunctioned after 4 weeks and had to quickly be removed. The Dr that implanted the flonic pump said that programming each month was a nightmare requiring much time. I get my pump filled 1 time a month and has a mixture of 4 different pain meds, i.e., fentanyl, morphine, baclifin, colonidine and puvicane. Sorry about the mistakes in spelling of the meds. Before you make a decision about a pump know this, it WILL NOT take away all your pain, it will help you to deal with it better. You have to change your lifestyle by eating better, losing weight, exercise, boy I sound like a dr here, I'm not. Yes I have had the catheter block twice and be replaced. I overdosed twice because of the pumps but think of this, your not taking any oral pain meds anymore. I also have a medtronic pain stimulator as well and on my second device. Nothing is going to completely take away all of your pain. Would I do it again, yes I would because the two devices give me tools to get me through the day, everyday. One comment I do have to say is that all intrathecal device reps need to educate er rooms on what you have implemented in your body because the 2 times I overdosed the er departments treated me as if I was a drug addict even after they were made aware of the device.

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Hello Bob
Was the doctor who overdosed you I guess since we can’t manage the pump right?
I trust my doctors now that they w not over dose me
I had it one time with another doctor and put me in the hospital
I have mine refilled every three and a half months
Only one med: dilaudid
I cannot tolerate morphine
I also take oral Dilantin and Baclofen

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Please don't be afraid of the pumps. What happened to me was a fluke. My doctor was not at fault at all. I have 5 different. Meds in my pump all the time and have benefit from them. The fentanyl and morphing can cause crystals to form at the tip which causes the meds to stop. When the blockage broke with me I received the med all at once. Noone was at fault and the hospital was on top of the situation quickly. Most people will never have a problem with their intrathecal pain pump at all.

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