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freezinginAK
Veteran Member


Date Joined Nov 2006
Total Posts : 1052
   Posted 7/18/2011 6:54 AM (GMT -6)   
  Anyone got an pain pump?
my pdoc sent me to a CP management doc, my lower spine is so bad that all my doc's but 1 (the spinal operation doc) have said not to have this operation as the pain may put me in the same amount of pain or 2 to 3 times more pain (nice odds) anyway my other doc's just keep me on many pain killers and relaxers for now. But the pain pump sounds like a good thing. But I have heard that a change in CP doc's will not work with you for refills on the meds as I'm thinking of moving back to the lower 48 in a year or two.
 
  So I guess that any info on this would really be helpful from anyone with a pain pump and just how good or bad are they?
 
   Cowboy up (well not so much anymore) lol ouch

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4981
   Posted 7/18/2011 8:22 AM (GMT -6)   
 
    Good morning Freezing! wink
 
          Welcome to the forum!
 
        Sorry to hear of your back troubles. We do have a few members with the pump, and hopefully they will see this post, and drop by for a visit with you.
 
     I myself,... would love to have one, but I'm afraid that you must have failed at most all of the pain med's before they will implant one. It seems to be the last resort in pain management.
 
   Good luck to you, and keep checking here for an answer.
 
 Take care,
 
 SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1147
   Posted 7/18/2011 10:36 AM (GMT -6)   
Hi Freezing :)

I have a pump that is partly for muscle spasms, partly for pain - mine contains baclofen and bupivacaine, but no narcotics.

Mine has been a sanity saver for me. I have Complex Regional Pain Syndrome with dystonia that causes deformity of both my feet and ankles and before we got my pump dose right I was almost totally confined to a wheelchair. Baclofen (muscle relaxer) is the important one in my pump - I was on 60mg a day orally and it was doing nothing. I'm now on 1.5mg a day via my pump and although my feet are still very twisted, I'm able to walk with crutches. The bupivacaine helps my pain. I'm still on oral opioids (oxycontin) and other medication though.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/18/2011 3:27 PM (GMT -6)   
Hello, I am nini53, I do not have a pain pump, I do have a failed neurostimulator.  In the beginning I asked for the pain pump, I was told that the neurostim was better cause with a pump, my body would get used to the medicines and I would have to keep upping my meds.
 
Sadly for me, I didnt think that with or without a pain pump, my meds were going to change and increase anyway.  I wasnt thinking, its already happened, my meds have been upped over the last 15 years, its going to happen,
 
Anyway good luck to you whatever you decide, take care.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11300
   Posted 7/19/2011 8:16 PM (GMT -6)   
Hi Freezing, I have a pain pump. Mine was implanted back in 1995 for low back pain. It only addresses those issues only. It does nothing for my neck pain or pain anywhere else.

As SE pointed out the pumps are pretty much for people that have exhausted all different types of pain medication and none will work and there is nothing left to give any relief. This is what happened with me, we ran of pain medications to try me on, I did them all.

It is very difficult to get another dr to take an existing pump patient on. I honestly do not know why, my theory is perhaps the dr may feel the person did not need the pump or maybe it is a liability issue, I really do not know, its like we are taboo.

I do have a new PM dr that handles pump patients only. My prior dr was the one that had the pump put in, he quit PM and went back anesthesiology. That was a blessing in disguise as he did not know much about pumps or the meds that can be used in them. I was the poster child for that one, lol. My new dr is amazing, her knowledge of these things is incredible. That in turn has made my quality life so much better. Yes, I still have pain, always will. I would have to be made a zombie not to feel the pain. That is not going to happen either. The prior PM dr is the one that knew of her and she reviewed his pump patients medical records and took 45 of us. A PM dr can either make a pump a success or a failure.

If you are moving back down here then you may be better off waiting on the pump until you are all settled. Also, if you will use the search feature here at the forum and type in pain pumps you will find a lot of info there as we have discussed the pump many times here. Take care and good luck.
Moderator Chronic Pain Forum

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 8/31/2011 2:14 PM (GMT -6)   
Hello,  Let me tell you I have had a pain pump for many years with morphine...the things is if it malfunctions you can od.  They changed mine to duliodid, to do that they cleared out my pump for a week and then put the duilodid in it by the next day the ambulance was here takeing me in for a over dose, and at the hospital they really od me..endend up in the cardiac care unit for 2 weeks.  The over dose gave me atriofib for a year, and lost a month of memory.  So I had them take me off...you just never know just like with the Fentanal Patches they are also risky as they can give you a over dose if the patch is malfunctioning...  So you have to think what am I giving up to take these meds?  In the long run it can ruin your intestines, and many other health probs.  So becareful, and I wish you well.
 
Leslie

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 8/31/2011 3:20 PM (GMT -6)   
Hiya Freezing...I wanted to jump in and welcome you, but I see you are a veteran member. A different forum perhaps? Or maybe I just haven't seen any of your posts. Regardless I want to say Hi!

I don't have a pain pump so I can't offer up any advise. I know we have some more members that have them. It also sounds like you got great advise above. I hope you can make the best decision for you. Take care and I hope to continue to see you around.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Undetermined Auto-Immune Dysfunction (probable MCTD, sero-negative RA and ?), Trigger finger, Carpal Tunnel, Cubital Tunnel, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1752
   Posted 8/31/2011 5:13 PM (GMT -6)   
Hi,

I don't have a pain pump either, but I did just have a discussion about one with my neurosurgeon. His opinion is that pain pumps are not the answer in most cases. This was because he felt like many more infections are caused by the refill procedures done. Of course, this is a personal decision and one that I have not yet ruled out myself, but something to consider.

I wish you the best and hope you find the answer to your pain.
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1147
   Posted 8/31/2011 10:07 PM (GMT -6)   
As far as infections go, I'd agree with Requiem. My medications come made up from a compounding pharmacy, and my pump fill is done with the same level of aseptic prep as for a minor surgical procedure... my doctor has a sterile field for the needle, tubing, syringe, etc., he does a quick scrub and wears sterile gloves, does a skin prep on me and so on.

This means the risk of infection is absolutely minimal... And for the amount of benefit it gives me, it's a risk I'm willing to take.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 241
   Posted 9/1/2011 3:49 AM (GMT -6)   
freezinginAK said...
  Anyone got an pain pump?
 
Also looking for info on a pain pump. I've been told that I would be tested with a spinal stimulator first then do some type of trial for the Intrathecal pain pump my current CP doc does not handle pumps at all.The Physician Asst that see's me in the CP's office has both the stimulator and pump but has just told me about the trials I need to go thru. I'm looking at 3 to 5 joint replacements over the next several yrs.I'm having my R hip replaced on 9/8 then my R shoulder after the recovery then the L hip
and it's a wait and see for the knee's, So far the bone's have minimal damage to both.
Has the pump made a difference in your quality of life or has it been a nuisance. Thanks Beck

AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS-Replaced 1 shoulder. replacing left hip 9/8/11 then left shoulder.
Bilateral Empyema with Thoracotomy with Decordication.(Removed the Lining of left lung)

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1752
   Posted 9/1/2011 5:31 AM (GMT -6)   
I did not mean to stir so much controversy on the infection rates. That was the concern my NS gave me this week about the pain pumps. I think he was referring to the number of times they must be filled in relation to the number of times the batteries have to be replaced in the SCS. Basically, every time you inject something into your body, you run the risk of some type of infection ie...more injections, more risks. I clean the area and inject HGH into my stomach every day. I have had one place infected since I started and I have no idea why. I cleaned it the same way, the needles are all sterile and the pen is sterile. I guess it was just a tiny trace of bacteria that wasn't killed with the prep. It's gone now, but it looked nasty for a while and did leave another scar.

A PP is certainly still on my list of posibilities. I'm giving myself time to consider the next step very carefully and hopefully calmly. Like all of you, I just want relief because I want a quality of life instead of what I have now.

Best of luck my friends!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11300
   Posted 9/1/2011 1:56 PM (GMT -6)   
I too have a pump and the nurses have all been trained in handling pump patients. My nurses with two different PM drs offices have the same protocol in refilling pumps, under sterile conditions and they are very serious about their refills. I have had my pump since 2005 without any incident.

As RM states this is strictly her drs opinion. Some drs like the pumps and some don't same with the stims.

Becky, to answer your question, my pump is for pain control and I have so much better quality of life than what I had before the pump. Do I find my pump to be a nuisance, absolutely not. I have no highs or lows, I don't watch the clock anymore till its time to take another pill.

I am able to do things with my 6 yr old grandson that I could not do before. it has been a life saver for me.

This is also a pump out that runs off of gasses within the pump and that eliminates the battery operated pumps and further surgeries to replace the pump because the battery has ran out.

If you have any more questions please feel free to post them here.
Moderator Chronic Pain Forum

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1752
   Posted 9/1/2011 3:55 PM (GMT -6)   
Hi Straydog,

I don't want to hyjack this thread, but I would love to hear more about your pain pump. If you are feeling up to it, could you give some information on which company you used and how your refills are done? The reason for the company info is not for endorsement, but to give me more data to research.

I'm very happy you noticed that it is not ME who is against the idea, but the NS. I have yet to discuss it with my gastro Dr or any of my other medical team members. The NS is great, but again he is against PP's and for SCS and reduced (or discontinued) meds.

I am so new to this whole series of considerations that any information would be greatly appreciated.

Thanks!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11300
   Posted 9/2/2011 9:02 AM (GMT -6)   
Hey RM, I have a Medtronics pump and they also make SCS units as well. I am going to give you their address, they have the best web site I have been to for info on pumps and they also have great info on the SCS Units. The address is Medtronics.com..

Like I said my refills are done by the nurse and it is all done in a sterile setting, from her wearing a mask & gloves down to the me being swabbed off with Betadine and a sterile drape in place. The refills are painless and very easy. The pump has a what I called a little portal that is accessed by the syringe and the old meds are drawn out and then new meds are put in, all in one stick. I will admit I am terrified of needles, always have been. But this does not bother me one bit. I also have a port a cath in my chest, it is used for any infusion therapy I need. I have terrible veins and this is so much easier. To access my port is the same as my pump, again totally painless.

A psych eval is required on pumps and the trial is the same as far as reduction of pain by at least 50%. I will tell you, when I did my trial I thought I had died & gone to heaven because suddenly I was not in pain, I was floored.

I feel if a person has reached the end of the road with orals medications and their quality of life no longer exists, if a dr recommends a pump, the patient really owes it to them self to at least do a trial. I don't even realize I have a pump anymore, its like anything else you become use to it and you don't realize its there.

These pumps were initially designed by cancer patients and I am sure it was a real crossing over the threshold for many of those patients that were able to get a pump. I can't ever imagine going back to the life I had without a pump and be in that kind of pain again, I guess what I am saying is I wouldn't. That was not living or even existing.

For more detailed info on the pump please feel free to email me, my address is listed here at the forum. I really don't mind answering your questions, but I prefer not to be repeating what I have said before here at the forum about pumps. I will try my best o give you the best info I can from my own experience with the pump.

Take care.
Moderator Chronic Pain Forum

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1752
   Posted 9/2/2011 3:31 PM (GMT -6)   
Thank you very much for the info and the website. I will probably email in a few weeks with more questions....since you did make the offer :) Mostly I'm going to be researching as soon as I can wrap my mind around the choices available.

Have a wonderfull holiday weekend!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....
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