Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 06-09-2007, 01:58 PM #1
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Crazy Intrathecal pump placement

A long time ago I slightly remember a thread that asked members who had Intrathecal pumps to speak about them. If anyone knows where that thread may be stored online, please let me know. If this is just something that never happened, I blame it on my pain meds! Ha Ha Ha

I have read online information but really hope for "people" information.
  • If you currently have a pump, how is it going?
  • If you had a pump and had it removed, what problems/issues came up regarding the pump.
I may be faced with making a decision and I am scared, I admit it. Getting more information reduces the tension so I thank anyone answering this in advance - THANKS!

Nancy-H
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Old 06-11-2007, 10:33 PM #2
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Default Well, since nobody answered -

Let me rephrase the question:

Has anyone tried an Intrathecal Pump and what was the outcome? Did it take the pain away completely? If not, why?

Thanks,
Nancy-H
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Old 12-28-2007, 07:48 AM #3
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Default Intrathecal Pain Pump Placement

Hi Nancy-h,
I'm sorry, I haven't been on this site in quite some time, but I did want to respond to your inquiry regarding Intrathecal Pain Pumps. I had one implanted in March 2003 and it has truly given me my life back. Prior to that, I was taking astronomical amounts of morphine every day and also bed-ridden; not a fun time for someone who was 44 years old! I had an L5/S1 fusion with graft in June of 2001, which I've been told has fused, but ended up with failed back syndrome. Nothing that was tried did any good for me, so as the last resort, my pain doc suggested the pump. At that time, I was ready to do anything to reduce my pain and get me out of bed. The trial went very well, and the pump was implanted. I have had several of the "rare" effects that can happen, but I would still do it all over again without hesitating for an instant. The issues have all been resolved, and I now have dilaudid, clonidine & bupivacaine in the pump. I do have the older model, so my refills are only 3 weeks apart, but once I get the newer implant, I'm told the reservoir can hold around double the drug as the one I currently have, so I'll be able to go longer between refills. Thank God for insurance, though, as the implant and maintenance is not cheap! I have to say that most days, I don't even remember that I have the pump; I'm working 40 plus hours per week, and my lower back does well as long as I don't over-do it. Once the lower back pain was worked out, my neck started giving me all kinds of trouble. I now have a spinal cord stimulator for the severe neck and right arm pain, which is also doing a fine job. Unfortunately, now the pain has also moved to the left side, so I'm stuck with lots of injections and nerve blocks for that horrendous pain. Overall, though, I'm SO happy I have the pump and the stimulator. I don't know what you've done since your post was back in June 2007, but I hope you're doing well at this point. Take care, and if you have anymore questions, I'll try to tell you whatever I can (I'm definitely not a medical expert, but I can speak about my experiences). Good luck to you!
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Old 08-02-2015, 11:22 PM #4
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Quote:
Originally Posted by Chlobert View Post
Hi Nancy-h,
I'm sorry, I haven't been on this site in quite some time, but I did want to respond to your inquiry regarding Intrathecal Pain Pumps. I had one implanted in March 2003 and it has truly given me my life back. Prior to that, I was taking astronomical amounts of morphine every day and also bed-ridden; not a fun time for someone who was 44 years old! I had an L5/S1 fusion with graft in June of 2001, which I've been told has fused, but ended up with failed back syndrome. Nothing that was tried did any good for me, so as the last resort, my pain doc suggested the pump. At that time, I was ready to do anything to reduce my pain and get me out of bed. The trial went very well, and the pump was implanted. I have had several of the "rare" effects that can happen, but I would still do it all over again without hesitating for an instant. The issues have all been resolved, and I now have dilaudid, clonidine & bupivacaine in the pump. I do have the older model, so my refills are only 3 weeks apart, but once I get the newer implant, I'm told the reservoir can hold around double the drug as the one I currently have, so I'll be able to go longer between refills. Thank God for insurance, though, as the implant and maintenance is not cheap! I have to say that most days, I don't even remember that I have the pump; I'm working 40 plus hours per week, and my lower back does well as long as I don't over-do it. Once the lower back pain was worked out, my neck started giving me all kinds of trouble. I now have a spinal cord stimulator for the severe neck and right arm pain, which is also doing a fine job. Unfortunately, now the pain has also moved to the left side, so I'm stuck with lots of injections and nerve blocks for that horrendous pain. Overall, though, I'm SO happy I have the pump and the stimulator. I don't know what you've done since your post was back in June 2007, but I hope you're doing well at this point. Take care, and if you have anymore questions, I'll try to tell you whatever I can (I'm definitely not a medical expert, but I can speak about my experiences). Good luck to you!
Chlobert (Pam)
How do you find the Pain pump my PM Doctor is considering me as a candidate after failed back surgery. L5-S1 Fusion in 2004.
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Old 08-03-2015, 03:55 AM #5
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Hi Gordo,

I'm afraid this is a very old Thread. Your best bet is to Post on our dedicated SCS and Pain Pump Forum:

http://neurotalk.psychcentral.com/forum118.html

Then use the Search Function at the top of your page to find Pump Posts/Threads. There is a fair amount of info dotted around that you can compress in this way.

In the mean time, Welcome to the Community, wander around and make yourself at home.

Dave.
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Old 03-31-2021, 10:14 PM #6
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Hi my name is Samantha and Iím 56 years old I just had my pain pump put in five weeks ago . I thought I was really prepared because I have fought for so long to get the pain pump , Iíve had everything you can think of injections, Stimulator , spinal surgeries tons of pain meds and nothing worked so finally five weeks ago and they put the pain pump in. I was surprised that I thought I had learned everything I knew about having the pain pump put in about how it would work and I was so wrong. I was not told that the pain pump would not even be turned on for two weeks and that I also needed to try to get off the pain medicines that I have been on for years before they would put the pain pump in that was quite difficult because I was already in excruciating pain. I go every week to have the pain pump turned up by 20% now thatís not 20% of 100% itís just 20% it is a very slow process she said some people take up to nine months or even longer getting it where it needs to be , now mind you they never told me any of this and was unable to find any of this information on the web . I also found out through trial and error that if they turn it up too fast it will cause you to sleep for several days because you have too much in your system also the nausea is way beyond ridiculous . I tried to ask them today why if it was going into my spinal fluid why I was having those kind of symptoms and the only answer they could give me is it happens . I also found out that you get Bonuses which means that in my case they gave me 5 to start with and itís normally only two but theyíre trying to give me the extra boluses until my pain pump is at your desired level they also told me that you can be locked out of getting more bonuses if you use too many or too little so itís just a matter of tweaking everything so boluses are every four hours for me I can have five in a 24 hour period with a bolus you have a remote where are you push the button that says RX you put that remote next to your battery and it will release a bolus which will give you an extra pain meds does for three minutes . So I received my pain pump five weeks ago and trust me it has been up and down it is a matter of tweaking your personal levels but one thing I rejoiced about today as I went into Goodwill and I was able to walk about 15 to 20 minutes without pain six weeks ago that wouldíve never happened if I stood up for more than five minutes I would be in severe pain so I called today and win win . Hope this helps someone .
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Old 04-05-2021, 01:23 AM #7
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Quote:
Originally Posted by Swingline6 View Post
Hi my name is Samantha and Iím 56 years old I just had my pain pump put in five weeks ago . I thought I was really prepared because I have fought for so long to get the pain pump , Iíve had everything you can think of injections, Stimulator , spinal surgeries tons of pain meds and nothing worked so finally five weeks ago and they put the pain pump in. I was surprised that I thought I had learned everything I knew about having the pain pump put in about how it would work and I was so wrong. I was not told that the pain pump would not even be turned on for two weeks and that I also needed to try to get off the pain medicines that I have been on for years before they would put the pain pump in that was quite difficult because I was already in excruciating pain. I go every week to have the pain pump turned up by 20% now thatís not 20% of 100% itís just 20% it is a very slow process she said some people take up to nine months or even longer getting it where it needs to be , now mind you they never told me any of this and was unable to find any of this information on the web . I also found out through trial and error that if they turn it up too fast it will cause you to sleep for several days because you have too much in your system also the nausea is way beyond ridiculous . I tried to ask them today why if it was going into my spinal fluid why I was having those kind of symptoms and the only answer they could give me is it happens . I also found out that you get Bonuses which means that in my case they gave me 5 to start with and itís normally only two but theyíre trying to give me the extra boluses until my pain pump is at your desired level they also told me that you can be locked out of getting more bonuses if you use too many or too little so itís just a matter of tweaking everything so boluses are every four hours for me I can have five in a 24 hour period with a bolus you have a remote where are you push the button that says RX you put that remote next to your battery and it will release a bolus which will give you an extra pain meds does for three minutes . So I received my pain pump five weeks ago and trust me it has been up and down it is a matter of tweaking your personal levels but one thing I rejoiced about today as I went into Goodwill and I was able to walk about 15 to 20 minutes without pain six weeks ago that wouldíve never happened if I stood up for more than five minutes I would be in severe pain so I called today and win win . Hope this helps someone .

Hey Swingline6,

Thanks for sharing your experiences. It sounds brutal. I'd never heard of a pain pump and I share a link below for others who haven't. Having read your words I now see my own problems as trivial.

I see what you have written as a kind of celebration that you want to share to help other readers. And you do this despite desperate chronic pain. I applaud this attitude and wish you well. I cannot tell you how full of admiration I am for you.

I hope you will keep us updated,

Best Wishes,

Atty

Intrathecal Pain Pumps For Chronic Pain - Are You A Candidate?
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Old 04-13-2021, 10:31 PM #8
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FYI, there is a NeuroTalk Spinal Cord Stimulator and Pain Pumps Forum
The old link that Dave posted no longer works.
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