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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-15-2009, 11:22 AM   #1
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hdladyred HB User
Smile Pain pump question

Hi everyone!
It's been a rough and stressful summer here so I haven't been around to post and support as much as I would like but have been doing my best. I finally got rid of the doc that only saw me as monthly dollar signs and am seeing a new one who is AMAZING. She's not giving me any false hope but she is all about treating me as her patient and a human being and she has many ideas to help me get some sleep and get my daily pain average under an 8 where it has been for over a year with the other doc with no recommended changes from him even when I asked. Anyway... All that aside my medication levels are getting pretty high and she is recommending a pain pump. I'm leaning heavily in that direction as I trust her knowledge and respect her for what she has done for me to date. My one question would be what changes about breakthrough pain meds when you are on a pump? Or does that part stay the same? My only other hesitation is not being able to have an MRI but I can't have one of those until I get the nonworking SCS out of my back anyway and work comp has been refusing to take it out since it stopped working over a year ago....kinda makes me want to growl at them but it wouldn't do me any food so hey I can still tell people I have lead in my butt!

Thanks and I hope you are all having less pain and fun filled summers.
Lissa

 
Old 07-15-2009, 06:31 PM   #2
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Smile Re: Pain pump question

Hi Lissa,

I haven't needed breakthrough meds since I got regulated with my pump. I had the first one for 8 years and never needed breakthrough meds except when I went through withdrawal two separate times. I found out that if I didn't get my pump refilled at least two weeks before it was due to be refilled, I would go through withdrawal. They say it's not a common problem, but does happen to some people. (Just wanted to clue you in to that possibility. It's not a big deal because I just get refilled two weeks earlier than I would have to if I didn't have this problem.) SO...I always have breakthrough meds on hand because you never know if something goes awry with the pump. You need to have them just in case, but I've never needed them for breakthrough pain.

About MRIs...you can have one with the pump. You just have to find a place that knows about these types of pumps. My PM sends me to a specific place that knows that there are no problems with MRIs and the pump. Some places aren't aware of this and won't take the chance, but I have had a couple of MRIs since getting the pump.

Hope that helps. Good luck with your decision.

Sharon

 
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Old 07-20-2009, 08:52 AM   #3
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martra1025 HB User
Re: Pain pump question

Sharon,

We have talked before about the pump. My husband still isn't getting decent relief. His dose is 5 and he has had the pump since the end of April. I had no idea he could need other meds for breakthrough pain. His doctor said once he was weaned off he wouldn't need oral meds. Why wouldn't his doctor tell him what he could take in the case of breakthrough pain? Very aggravating.

 
Old 07-20-2009, 04:53 PM   #4
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Hi Tracy,

I don't know why your husband's doc didn't tell you about breakthrough meds, but I've always been given them. I haven't needed them, but you never know when/if the pump malfunctions and you need them. As I said before, I went through withdrawal three times; two because we'd never figured out that I needed to be refilled earlier than just before the reservoir goes empty and once a few months ago because the catheter left my intrathecal space and was floating around somewhere. In all three cases, I needed to take oral meds until they could fix the problem.

I would say that even if he didn't need them for pain, it would be best to always have them on hand just in case. Sadly, you're telling me that he actually needs them for pain.

Has he seen the doc since the last time we've spoken? Does he get any relief from the pump? I'm really sorry he still has pain. It sounds like he still needs an increase???

Sharon

 
Old 07-20-2009, 06:31 PM   #5
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Re: Pain pump question

Hi Sharon,

Once again the doctors office is playing the "we didn't get your message" game. I wonder if this office treats all of their patients this way. He called last Tuesday to make an appointment and we are still waiting for a return call.

I agree that he needs an increase. I wish I knew why the doctor jerks him around. It doesn't make any sense to me. What is the big deal? If the current dose isn't enough, increase it. The doctor just makes mention at every increase that he will need to be refilled sooner or will build up a tolerance quicker.

Thanks again for your quick response.

Tracy

 
Old 07-21-2009, 12:01 PM   #6
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hdladyred HB User
Re: Pain pump question

Sharon,
Thank you for your answer - I apologize for the delay - It's still been a really tough summer. Tracy- I'm so sorry to hear what you and your husband are going through - I can certainly sympathize -you're in my thoughts and prayers and I hope that things settle down soon for him.
Lissa

 
Old 07-21-2009, 04:30 PM   #7
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sharon1030 HB User
Smile Re: Pain pump question

Hi Guys,

Tracy, that's SO frustrating. I'm frustrated for you!!! Keep us posted on any progress you make.

Lissa, you're welcome.

Sharon

 
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