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Pain Pump Questions....

AnonymousUserAAnonymousUser Posts: 49,623
edited 06/11/2012 - 7:18 AM in Pain Management
Hi All...
I'm hoping that some of you with pain pumps can answer some questions I have...

I had a really bad week, which involved a three day hospital stay to get my pain back under control. My doctors are now recommending I start considering a pain pump to control my pain. I like what I've read about them, but I've learned that the real stories come from people who have actually had them!!! Here are my questions:

- What made you decide to get a pain pump?
- How exactly does it work?
- What is the surgery like to have once placed?
- How long is the recovery from the surgery?
- How do they 'refill' the pump?
- Is it true that it sticks out from your skin?
- Are there any limitations to what you can do once you have a pump implanted?

Any other information that you can provide that you would have wanted to know when you were considering getting the pump would be much appreciated!
Thanks!
Janiel
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Comments

  • hi there have you had a look at the medtronic site? they cover pain pumps and scs there are on line vidios to watch and i think that most of your questions will be answered..i am waiting for a scs myself at the moment i am taking a lot of oxycodone to control the pain so i know how you are feeling many thanks tony
  • Hi Straker-
    I have looked over the Medtronic site extensively, and watched all their videos/read their information. Thank you for the tip!
    I went to a PM doctor on Tuesday, and he has decided that I am a good candidate for a pain pump (hooray!) He is going to take a couple of weeks to research my disease more thoroughly and become more familiar with it himself (Schuermann's is a pretty rare disease)and then we're going to go forward with the trial and implantation. The only change he's going to make for me is implanting the pump device itself more toward the middle of my stomach (rather than closer to one side or another) because of the severity of my kyphosis. He's worried that since the sharpest angle of my kyphotic curve is around the bottom to mid-line of my thoracic spine it might cause my ribs to bump or rub into the pump if it's not more centrally located. I was glad that he thought of that detail - I would have been pretty bummed to have it placed only to have it start rubbing on my ribs!

    I'm really excited that I am a candidate for this type of intervention since it really seems like it could be life changing. I'm trying to not get hung up on the little vanity issues surrounding it (what can I say - I'm a 23-year-old female who isn't SUPER excited about looking like I have a tuna can or hockey puck stuck under my gut!! :P ) I do realize though that walking with a cane or needing a wheelchair (which has been the only way I can functionally get around for the past month) also isn't the best look either! And feeling good is more important to me than anything else at this point...
    I am curious how much the pump is going to protrude from my skin though. I know it must be different for everyone based on size and weight, and the doctor did tell me that being petite (I'm about 5'1" and 120 lbs) means that it will obviously be more prominent. But how much does it actually stick out? Is it obvious through the skin that there's something implanted? Can you see it through tighter fitting clothes? If anyone can answer this or just give me a general idea that'd be great!

    Thanks for the help! Janiel
  • hi janiel
    my names nicky and im 40 years old i have been suffering from severe chronic back pain for the last 20 years which was caused by scheurmanns disease, scmorls nodes and ddd.
    I have under gone 3 fusions one in 1994 a 2nd in 1996 and a 3rd (a plif) just 8 weeks ago
    All medical intervention made the pain worse over the years but the only thing that seem to help a bit is my scs. I dont know that much about the pump but i do know that it is far more invasive then the stimulator as you are very open to infection and a friend of mine ended up with an absyss with hers so make sure you look into it beford you go ahead with it. If you decide to go ahead, and its like the stimulator then it does stick out a bit form your clothes but nothing teriible
    If you need to ask me anything please dont hesitate to get in contact good luck in whatever you decide to do and keep in touch Take care Nicky
  • I had a pump implanted two years ago due to unresolved lower back pain from degenerative disc disease, spinal stenosis and herniated discs at L4-L5 and L5-S1. I decided to do it because I was on a lot of oral meds and they were not helping me plus had alot of side effects. I have a pump under my skin that delivers the meds through a catheter into my spinal cord.

    I had the procedure under sedation but I didn't remember much of it. The only issue I had was a "spinal headache" for the 1st 24 hours. It is like a migraine whenever you are upright. The recovery from the procedure was quick, just a headache.

    They refill the pump through a port that is covered with rubber (I think). They give an injection of lidocaine and then they use a needle to refill the pump. I only feel the lidocaine (like a bee sting) and after that I don't feel anything. My pump doesn't stick out but I am bigger than you are (5'10"). I sometimes have to feel around for it. You can't see it under my clothes. I can feel it sometimes when I carry something and it presses or bumps against it. I don't have any limitations from the pump more than those from my back problems.

    They just switched me to a new drug called Prialt that is only for the pump. It isn't a narcotic and is used for neuropathic pain. It has worked great for me.

    Before I had it put in I had the same questions you do but if it helps your pain and gives you back your life than I will be more than worth it. :)
  • Stacy-
    Thank you so much for sharing your experience! I'm definitely going ahead with the procedure, just waiting for all the insurance junk to get figured out.

    I am going to have to have my pump in more of a central area in my stomach (I guess usually it is lower and closer to the hip). I have a pretty severe thoracic curve because of my Schuermann's, so my doctor thinks if he does it close to one hip or another there's too much of a risk of the bottom of one of my ribs to rub on it. Because it will be in a more unique spot in my gut they're going to have to put me out completely for the surgery because it will be slightly more invasive because of it. Where is your pump located?

    I am so excited about the potential of getting off all this medicine! The side effects I'm currently experiencing are just about intolerable...They range from sweating and constipation to pretty significant memory loss and word recall problems. Plus it seems I am increasing my meds almost weekly to control my seemingly always growing pain. My PM doc is going to try a combination of morphine and baclophine (sp?) for my pump, because pain and muscle spasms are my two biggest problems. Either one of the drugs is covered by the FDA for the pump, but combining them in the pump has not yet been approved, so if I do decide to go that route it will be off label. I'm still trying to figure out what I want to do... When I do the trial we are going to try it with the combined drugs, so we can get a better idea of how it will work for me.

    Did you have a trial for your pump? If so, how was it done (outpatient injection, catheter in the hospital...?) Why do they think you got the spinal headache? (I've heard those are pretty awful - yikes!) What do they do for you if you get that?

    I'm glad to hear that the pump isn't noticeable for you. My PM doc warned me that since I'm pretty petite it will probably show somewhat, but if it relieves my back pain as well as you're describing it's more than worth it!

    Again, thanks so much for sharing your knowledge...If you think of anything else that you think would be helpful for me to know as I go into this procedure I would so appreciate it if you'd send me an email or pm!

    Thanks - Janiel
  • I too am looking at a pump, my doc is concerned about them being able to create a large enough pocket and it not looking like a "hockey puc" sticking out. The pump is about 1" thick, and if it sticks out too much you may keep pushing at it. Don't obviously have any idea what your tummy looks like, but I have had 7 children and in the process developed a hernia. Since they had to fix that, had a tummy tuck-bonus! I have narrow hips now, with flat abs and I really want this pump but also want to wear a swimsuit. I have been looking for sites that show pictures of people who have pumps, with no luck. Please let me know if you find any!
  • When I asked about the timeline about getting the pump, this is what I was told (obviously this is how they do it in my area, does not mean it is in yours).
    Some insurance will require a psych. eval (no joke), my doc said not an issue just something that most require. Also, there is a trial before it is inserted and this depends on your doc it can be inpatient or outpatient. All has to be precertified with your insurance. One thing I did not even think of is that they had to schedule the Medtronic rep to be there for surgery when they implant the pump!
    I would love to hear your experience when you get it!
    If you do get a spinal headache (mine was with a mylogram, not sure if they handle it the same way)the do a blood patch. They take blood out of your arm and put it in your back where the spinal cord fluid leaks out and it forms a bandaid. Instant results!
  • Hi Momof7-
    Yep, my insurance requires a psych evaluation too - I don't think it will be an issue because I'm not looking for a 'fix', just something that will make my life more manegable with my pain (which is what I'm figuring they're looking for...) Pretty sure I'm not depressed either, and I'm not seeing anything like pink hippos dancing out of the walls, so I think they'll pass me! :P

    That's really interesting about the Medtronics person having to be present - I definitely hadn't heard that part! I live in CO, so I wonder how many Medtronic people are just hanging around my neck of the woods waiting to pop in for these surgeries?

    I think I'm going to do the inpatient form of trial. It's supposedly a more accurate trial of how the pump itself will help you. The downside is you're stuck in the hospital for a few days, and therefore it costs more as well. But I figure I'd rather take a little extra time and money up front to make sure that the surgery itself is successful.

    Thanks for the info about the spinal headache - that's comforting to know they have a good fix for it!

    I go back for everything to get scheduled and started in two weeks (the 29th) so I will keep everyone updated on what happens!

    Thanks for the support! (And a mom of 7?!?! I am truly impressed!!!! :) )
  • There will be a rep in your area, and for just for the fact that it is to increase their sales you should have no problem getting someone. Think of it like having a knee replacement or anything like that, you will have a rep present with the equipment and to answer any questions. Plus, they will go ahead and make sure it is working and programmed correctly. Coming from that side of the business, you cannot gaurantee that type of equipment unless you have someone from the company there overseeing it being put in properly. Obviously, there may be exceptions to everything, but this is an expensive piece of equipment!
    The psych eval is just a check in the box and from what I have heard they expect you to be a little depressed or anxious. I spoke with the Medtronic rep last week and talked to a patient with a pump in for the last three years.
    Looking forward to hearing your results, I too would rather sspend a few days in the hospital, especially if you are looking to see if it works for long-term pain control (and if they have to adjust/change meds).
  • I ask because long story short, I am about to turn 66 years of age, male, had 2 fusions in 2003, CERVICAL C5-C6 and 6 weeks later at L3-L4. Botched badly, lost my job of 22 years and never worked again. Finished at age 55. My primary care doctor advised me NO surgeon ever allows more than 2 fusions and I asked why I had been conned into ANY if they were supposed to stop the tearing, searing soft tissue pain and spasms in my lower back and in fact did NOTHING to help. His response was that my back was now a "train wreck" and that is a direct quote. I had also had 5 prior stomach hernias repaired so he basically wanted me to use narcotic pain meds. I flat refused.

    Fast forward after over a dozen MRI, CT tests, dozens of X-Rays. The hardware had been placed wrong in my prior lumbar surgery. No kidding....I had know that when I never walked again without a severe limp from my left leg that I now "drug" behind me. It is now Nov 2013 and I wake in the night feeling as if I had been shot in my left buttocks. I go to get up and fall. My left leg is now 100% paralyzed and NO feeling, NONE. I meet a new ortho surgeon whose tests show he needs to remove that old misplaced L4 hardware & redo it. He ALSO needs to fuse it ALL. From L3 to and including S1. I now have NO choice and accept his demands to at least do low dose Hydromorphne, Tylenol etc combo medications until the following April 1, 2004 surgery. The delay was because I literally had to switch health plans that would then allow him to use the hospital that has the Mazor Robot for such a complex surgery. Time for the operation and he opens me to discover something all those MRI and other tests never saw which REALLY makes me crazy mad....A huge tumor the size of a very large grapefruit wrapped around the base of my spine! THIS was all that caused the paralysis and foot drop...but hey, we DO have authorization so lets fuse the boy up anyway right? (me bitter?)

    Even longer story as short as possible. The next 13 months are worse than my time in War in the USMC. I develop a monster football sized Seroma where that tumor had been. I now have a drain tube in my back and for 5 months my wife misses work to drive me to the hospital for Interventional Radiology to change this tube and inject me with Betadyne and later actually use a Chemo drug in attamps to "scar" it to close up. EACH visit has a co-pay of $250.00 plus other fees. My wife also spends an hour every single NIGHT, injecting me with these fluids to fill me with scar tissue. pain is off the charts and I am not allowed to shower or bath in the hottest year on record. They call in a plastic surgeon who literally not only botches his attempt but butchers me in the process. While my primary care doctor is searching for a new plastic surgeon and getting authorizations etc I feel a tiny pea sized lump in my left breast. (yes, I AM MALE). But it hurts SO bad the doctor send me to a surgeon and back to the hospital I go. But in that 3 week wait it has now grown to the size of a little bigger than a very large egg! So they have to now do a full Mastectomy....Having fun yet?
    OK, 4 more days and now plastic surgeon #2 does the next back surgery for the Seroma. So in the space of 5 weeks I have just had 3 more MAJOR surgeries.

    I never recover this time. Today makes it 9 months and 2 days since the initial multi-disc fusion. With all the complications I was never able to do the walking or physical therapy. Now, I can't even stand straight up anymore. Walking is a memory. I creep around on a walker and those endless tearing, burning RIPPING muscle type of "soft tissue" pains are worse than ever. I have been on Fentanyl 50 MCD patches since the 4/1/2014 surgery non stop. They no longer help one bit. Today I see my primary care doctor and ask to have them cut to 25 MCD so I can begin a completely drug free life again. But last week met with a pain management office. They agree with me since the narcotic pain meds no longer help and now I am terrified of the withdrawal process ahead beginning tomorrow.

    The Pain Management office is practically SHOVING the neurostimulation implant device on me since I can have a "trial"period with it. I have had ZERO results using any and all forms of TENS units and I feel this is just a glorifies similar device. I also see I can have a "trial" of the Intrathecal Pump as well (to a degree) and feel it is the only REAL chance I have for honest pain relief. My entire need is to STOP the pain that for me is a full 10 almost 24/7 but not be high or drugged. I have not driven in over a year as I refuse to put others at risk and as a result, I now risk my wife losing her job of 35 years due to missing a couple times a week for over a YEAR now. They have been undeniably supportive and caring but they also have to have someone they can count on. I was supposed to give Pain management my answer in 3 days, the end of this week. But I cancelled that appointment. I meet today instead with my primary care doctor to ask for a prescription to cut my Fentanyl by 1/2 and guide me through withdrawal. I am utterly TERRIFIED as my pain is completely unbearable now on the drug. Yet as it wears off (if I even can tell, not sure anymore?), I don't notice much of anything other than horrific withdrawal symptoms.

    My goal is to be off all narcotic medication to make my decision as to what to do to contol pain for what little time I have left on this Earth. I want to be less of a burden to my wife. I want to stop thinking that ending my own life is my only way to escape this pain that has turned me from an extremely strong and vibrant, athletic semi pro surfer and motorcycle rider & racer into a withering old man, hunched, crying all the time, beaten down and defeated. this is NOT me. Does anyone have any experience with these pain pumps with back spams and.or soft tissue pain? i hate that word. "soft tissue pain".....It is all I ever had. Now this year alone so far I have over $450K in medical bills! Before, I had trouble walking and that tearing in my low back. Like a zipper pulling across my low back, a muscle tearing is all I would feel then back to bed for a month. Now? Well now I can't walk, can't even stand half the time without a walker. I honestly could care less anymore about ever walking. I just need to stop this PAIN....ANYONE who knows if these pain pumps help with muscle pain, please let me know? I have read so many horror stories about all that goes wrong I am scared out of my mind. One more "failure" and I will have to end it myself. And I promise you, that is NOT me or who I am.
    Fusion With Hardware C5/C6
    Fusion With Hardware L3 THROUGH S1
  • Old Marine,
    I will dispense with my pain history...too long........severe......contemplating suicide. I have been putting off pump for five years
    and have not left home except to see pain clinic.My wife and teenage son left and took life savings so no one around,I give of social security check paying strangers to bring food etc.My German Shepherd only reason to stay alive.70 years old and never experienced fear due to boxing and street fighting.
    I can only say I empathize..................your story is sad. But you have your wife.Why am I afraid? Things go wrong.A hospital error cover up murdered my beloved Dad and Mom. My brother who recently passed on worked as anesthesiologist and told me that iatrogenic episodes happen OFTEN.I do not fear death....but ventilators etc..I do! These pumps are wrought with problems and today's doctors lie all day because Medtronic pays them a ton of money/trips/cash name it. Good luck!
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