Medtronic Pain Pump patient w/ Fentanyl

Regina in Louisville Community Member August 28, 2007
  • Hi,

    I am entering my 9th month of having the pain pump surgery.  My activity level has increased dramatically.  I am now up to jogging daily 3-4 miles!!  My goal is to attend nursing school within the next 2 years.  I tried in January but as unable to handle the constant sitting (class, driving, and studying).  It takes so many months to get your pump where u need it 2 be.  The docts don't want to start it off 2 high, so it is a gradual increase, I am still getting increases and stronger versions of the fentanyl with my refill visits. 

    I would stongly suggest this to EVERYONE who is experiencing chronic pain and meds fail.  This has given me my life back, atleast a large portion.  I no longer spend the majority of my days in bed.  I can't say how wonderful it is to enjoy my 3 children again (ages 9, 8, and 2).

    By the way I had back surgery about 6 years ago, lower back w/rods, screws and bone from my hip, so it is not a problem to have the pump implanted.

    Anyone have any help for me to obtain my nursing degree??  Please send any info, and prayers!

    Gina

37 Comments
  • Anonymous
    C.bABINEAU
    May. 08, 2009

    I am very encouraged to hear positive things about the Medtronic pain pump.  I just recently had mine installed less than 2 weeks ago.  No success yet, but by your comments,it sounds as if it takes alot of time to get the level correct so that pain is under control and you re not in La La Land.  I am experiencing what my doc calls "spinal headaches"...

    RHMLucky777

    Read More

    I am very encouraged to hear positive things about the Medtronic pain pump.  I just recently had mine installed less than 2 weeks ago.  No success yet, but by your comments,it sounds as if it takes alot of time to get the level correct so that pain is under control and you re not in La La Land.  I am experiencing what my doc calls "spinal headaches" since the surgery, where the pressure in the spinal cord gets messed up when the tube is installed.  So my normal neck and head pain are much worse, and I would describe this new pain differently than my usual.  I cannot cough unless I literally hold my head (and it's excruciating), I can't look up without incredible pain, and the pain is worse at the base of my skull.  They said that it could take up to 2 wks to go away.  It will be 2 wks next Monday.  So far I am still on Fentanyl (100 mg) patch (change it every 48 hrs), as well as Oxycodone 15 mg (2 - 3 each every 3-4 hours around the clock.  I was taking about 21 of these per day.  My pain level is still about a 7+ (on a scale of 10). So,tell me, how long after the surgery did you experience significant pain relief.  My doctor is wonderful and all his staff.  When I read about others who have the pain pump and their doctor won't increase their levels and won't add other oral meds, it's just awful.  Find another doctor who specializes in pain management only.  No one else will understand chronic pain.  I have had chronic pain since I was a child, possibly since birth ... I am not sure.  Birth defects of the neck, skull and spine ... also only one kidney and additional ribs (cervical ribs) that cause neurological problems, which causes pain as well.  I am just grateful that this pain pump has been offered to me.  I see it as my last chance to have pain under control.  I now realize, from your comments that it might take many months to see if it works for me.  So, you jog ... that's terrific. 

     

    I love hearing that there are those of you out there who are able to take their life back, be active and have significant pain relief.  Nice talking to you. 

    • JCW11
      Nov. 28, 2011

      This is to everyone. Excuse my double posts. THe pump was a lifesaver for me, but as in my other post, had I know my insurance was going to run out I surely wouldn't have done the pump for the simple fact that the cost to me after insuance was so high that the costs have taken all our savings and have put my wife and myself in a precarious finacial situation...

      RHMLucky777

      Read More

      This is to everyone. Excuse my double posts. THe pump was a lifesaver for me, but as in my other post, had I know my insurance was going to run out I surely wouldn't have done the pump for the simple fact that the cost to me after insuance was so high that the costs have taken all our savings and have put my wife and myself in a precarious finacial situation and I have no idea as to how I will remove it when the battery expires etc. But as I have said to all those pondering the pump , do it as long as your are aware of the cost and how you will pay for it. At one time my insurance was paying up to 16-18 thousand dollars a year. But when I became financialy responsible I had to work with my doctor to turn the dosage down a little at a time until I had no more money, at which time the doctor filled it with saline to keep it viable in the event that something miraculous happened and I could afford it again. I have to add that my wife fears that long term exposure to fentynl will cause a new set of problems. I will say my doctor filled my pump at his expense a few times and I consider him a saint as far as giving me my life back for those years that I had. He is the best pain management specialist in our area in my opinion. Dr. Sami Maywood, MD in San Diego, Ca. I haven't had the courage to ask what happens when the pump has to be removed and I don't have the thousands of dollars for the surgery. Best of luck to all. Feel free to email me for any questions you might have jcwbt@sbcglobal.net and God Bless JCW

    • viv
      viv
      Aug. 02, 2013

      Dear JCW:  You are concerned with cost and being able to afford the pump and surgery when battery expires. Are you not DISABLED?  If not, pls check into it.  However, most people in our situation are.  Medicare covers the costs of the pump and meds.  I can't even afford Medicare, so turned in for a HMO in my area.  They had to...

      RHMLucky777

      Read More

      Dear JCW:  You are concerned with cost and being able to afford the pump and surgery when battery expires. Are you not DISABLED?  If not, pls check into it.  However, most people in our situation are.  Medicare covers the costs of the pump and meds.  I can't even afford Medicare, so turned in for a HMO in my area.  They had to provide a doctor especialized in this area and did.  So, now all my expenses with the pump and meds are covered, as well as surgeries and replacement of pump (which I already had under this insurance).  Hope this helps??  Praying for you...Viv

  • Anonymous
    Anonymous
    Aug. 15, 2008

    I just read that you had fentanyl in your pain pump. Could you give me information on the doctors decission to use "fentanyl"?  I couldn't tollerate morphine so we went to dilaudid.

    Now the dilaudid is not providing relief so I asked about fentanyl.  The doc said no, but suggested prialt.  I said no.  Prialt is still considered experimental. ...

    RHMLucky777

    Read More

    I just read that you had fentanyl in your pain pump. Could you give me information on the doctors decission to use "fentanyl"?  I couldn't tollerate morphine so we went to dilaudid.

    Now the dilaudid is not providing relief so I asked about fentanyl.  The doc said no, but suggested prialt.  I said no.  Prialt is still considered experimental.  Any information you could give me on the fentanyl would be greatly appreciated.  Thank you,  Chris/IL

    • Regina in Louisville
      Aug. 16, 2008

      Hello,  The only info I have is that I was allergic to Morophine, dilaudid did not work, so my doct said Fentanyl was my last resort.  I was going to go to the "snail venom" but I don't have full coverage insurance and could not afford 1.000 a month!!  I actually had my pump turned up to 2500 and was still experiencing pain so I decided...

      RHMLucky777

      Read More

      Hello,  The only info I have is that I was allergic to Morophine, dilaudid did not work, so my doct said Fentanyl was my last resort.  I was going to go to the "snail venom" but I don't have full coverage insurance and could not afford 1.000 a month!!  I actually had my pump turned up to 2500 and was still experiencing pain so I decided to get it turned down, I am now down to 150 (enough for the med in my pump to last until Aug 2009) so I am scheduling to have it removed next month.  I began a lot of mediation, stress free, pain free books, and taking many herbs that has given me a new "drug free" life.

      Good Luck!

      Gina

    • Anonymous
      Anonymous
      Oct. 10, 2008

      I see that you live in Louisville, Ky.  I want my pump removed due to sleep apnea and my doctor is angry and does not want to remove it eventhough the sleep specialist said the med was the problem. I failed to breathe 99 time during the sleep study.

      Let me know who your doctor is so I can see if he will remove my pump.

      Thanks so much

      deeakers@insightbb.com...

      Read More

      I see that you live in Louisville, Ky.  I want my pump removed due to sleep apnea and my doctor is angry and does not want to remove it eventhough the sleep specialist said the med was the problem. I failed to breathe 99 time during the sleep study.

      Let me know who your doctor is so I can see if he will remove my pump.

      Thanks so much

      deeakers@insightbb.com

    • Regina in Louisville
      Oct. 12, 2008

      Hello, I am responding to your article about the pain pump.  My doctor is AWESOME, his name is Gary Reasor at Metro Pain Assoc in the Suburban Medical Center on Dutchmans Lane.  Good Luck!  He has been a life saver to me and my family! Have a healthy day Gina Vogt

    • Leah K
      Nov. 26, 2012

      He is my dr as well and of all the dr's I have had he is the only 1 who would sit down with u and talk to u about your feelings with the meds. We tried the shots, and the trial stimulator and tons of oral meds with a no go. I got my Metronics pain pump with fenyntanal and bolus oct 1 2012. It has been the best thing for me. Its a slow process but Im up more...

      RHMLucky777

      Read More

      He is my dr as well and of all the dr's I have had he is the only 1 who would sit down with u and talk to u about your feelings with the meds. We tried the shots, and the trial stimulator and tons of oral meds with a no go. I got my Metronics pain pump with fenyntanal and bolus oct 1 2012. It has been the best thing for me. Its a slow process but Im up more and have started to go back to school online. 

  • Anonymous
    Karen George BSRN
    Jul. 09, 2008

    Hi Gina!

     

    Did you have Duragesic patch prior to choosing this method of

    pain delivery?  We have a high demand that will not be filled for

    nurses but you must have a very high scholastic background and

    excellent grades and I would suggest going straight for your

    BS (BSN is a bit lower less science.)

     

    Please email me at toughyou@aol.com for further...

    RHMLucky777

    Read More

    Hi Gina!

     

    Did you have Duragesic patch prior to choosing this method of

    pain delivery?  We have a high demand that will not be filled for

    nurses but you must have a very high scholastic background and

    excellent grades and I would suggest going straight for your

    BS (BSN is a bit lower less science.)

     

    Please email me at toughyou@aol.com for further discussion!

     

    Karen George BS,RN,UM,QC,DON

  • Anonymous
    CAROL GLASCOCK
    Apr. 05, 2008

    I am a nurse practitioner and have had the MS pump for 14 years (replaced several times).  Now a doctor tell me the MS is causing respiratory acidois and central sleep apnea.  He wants to completely go off MS.  That was a real trial even is reduced very slowly.  You well have withdrawal symptoms, it was very depressing.  Now they are...

    RHMLucky777

    Read More

    I am a nurse practitioner and have had the MS pump for 14 years (replaced several times).  Now a doctor tell me the MS is causing respiratory acidois and central sleep apnea.  He wants to completely go off MS.  That was a real trial even is reduced very slowly.  You well have withdrawal symptoms, it was very depressing.  Now they are tried several other things but they all have terrible side effects and couldn't tolerate.  Also watch out if you suddenly aren't getting pain control, one time the catheter got out the proper space in the back and they kept increasing morphine which made me very sick.

    You have to be atune to such things.  The Pump has been a God send and had helped me so much now I searching for something that will help.  I have even tried the Ziconitide, very new out, cost $5000 everytime it is filled just for the medication.  I had terrible side effects with this medicine also.  I was opened to anything and have been through most. I tried the dorsal column stimulator before the pump and it wasn't very helpful although they are entertaining a much improved model.

  • Anonymous
    Kathy in Missouri
    Sep. 17, 2007

    I've just started reading everyone's posts and I too am on the fence regarding the pump.

     

    After 3 years of failed back surgery, I suffer with degenerative disc disease. I just turned 40 and my doctor's told me I have the spine of an 80 year old. I'm struggling with scar tissue and/or nerve damage that has left me in pain in my foot...

    RHMLucky777

    Read More

    I've just started reading everyone's posts and I too am on the fence regarding the pump.

     

    After 3 years of failed back surgery, I suffer with degenerative disc disease. I just turned 40 and my doctor's told me I have the spine of an 80 year old. I'm struggling with scar tissue and/or nerve damage that has left me in pain in my foot and calf.

     

    Pain med's don't cut it, I've received the nerve stimulator and I'm going for my second revision (trying to reach the pain in my foot and calf). I would like to say that the stimulator has helped with my pain in my lower back, but it's done nothing for my pain that I experience all the time in my foot and leg.

     

    I've tried all the nerve medications (neurotin, lyrica, topomax, etc. - sorry for the spelling) and the only thing they did for me was make me a goofey, paranoid mess still in pain. I've tried the antidepressants, topical creams, blocks, nerve treatments, injections, patches and pain medicines, none have relieved my pain.

     

    So, with all that behind me.... can you still be employed and have the pain pump? So far everyone that I have talked with (just a handful) has been on disability. I'm not ready to give up my job, but I am looking for relief.

     

    The pain doctor's are actually pushing the idea of the pump, for fear I'll be taking too many oral med's and build up a resistance now and then I will be in trouble later on in life when my back fails me again.

     

    Any thoughts or ideas or suggestions?  

    I wouldn't rate my pain as the "worst pain", it's a dull ache, 24/7 leaving me feeling like "I know that other people are in worse pain" so I shouldn't be complaining, but it's not a feeling that I want to live with either.  

    • Regina in Louisville
      Sep. 19, 2007

      Sounds all so famaliar!! 

      I am 100% FOR the pump, it is my LIFE SAVER!  You can absolutely work with the pump, as a matter of fact my doct said for me to become an RN would look much better on a pump than with meds that I would be tempted to take (if I was working and in pain).  You don't even know you have the meds in your system. ...

      RHMLucky777

      Read More

      Sounds all so famaliar!! 

      I am 100% FOR the pump, it is my LIFE SAVER!  You can absolutely work with the pump, as a matter of fact my doct said for me to become an RN would look much better on a pump than with meds that I would be tempted to take (if I was working and in pain).  You don't even know you have the meds in your system.  With the exception that the last couple of times I had an increase I threw up for a day or so (yuck!) but all in all it is worth it, and no matter how poor I am - I will always have $$ for the pump increase. 

      I too am on disability however my goal is to go thru RN school and get off as soon as possible!!

      Good Luck!

      Gina

    • Anonymous
      Kathy
      Sep. 19, 2007
      Thank you Regina for answering my question. One other thought... are you able to drive or have a drivers license? Are there any restrictions? Having the pump? I already have the nerve stimulator so airport security pat downs are always humorous and expected. Thanks in advance. 
    • Regina in Louisville
      Sep. 19, 2007

      No restrictions whatsoever.

      My kids and husband get a kick out of the airport check, they think I look like a criminal (getting patted down).

      I have lost weight since the implant and it really sticks out.  Carrying around my 2 yr old sometimes is painful if/when she gets her leg stuck on it -yuck!

  • Anonymous
    Anonymous
    Aug. 31, 2007
    Best of luck to you and congratulations on your success.  Your success will inspire many to follow in your footsteps.
  • Bill
    Aug. 29, 2007

    Gina, please take a look at my post (8/29/07) or get back to me if you can.

    I am just about to begin with a medtronic pump.  I appreciated your sharing that it takes a while to get the meds right. 

    Did you suppliment with oral meds until it was helpful with just the pump?

    What was the whole thing like or have you written that up previously (I just got...

    RHMLucky777

    Read More

    Gina, please take a look at my post (8/29/07) or get back to me if you can.

    I am just about to begin with a medtronic pump.  I appreciated your sharing that it takes a while to get the meds right. 

    Did you suppliment with oral meds until it was helpful with just the pump?

    What was the whole thing like or have you written that up previously (I just got connected to this site)?

    I too have had fusion 6 years ago and have been living with pain ever since.

    You post makes me feel hopeful.

    thanks, Bill

    • Regina in Louisville
      Aug. 29, 2007

      Hi Bill,

      I am new to this site, yesterday actually, so I didn't know how 2 pull up ur post. 

      My doct did a trial in the hospital before implanting 2 make sure it would work 4 me.  We also found out that I was allergic to Morophine and the Hydormorph so the Fentanyl was the last try.  Thank God it worked!  I was in the hospital for 5 days...

      RHMLucky777

      Read More

      Hi Bill,

      I am new to this site, yesterday actually, so I didn't know how 2 pull up ur post. 

      My doct did a trial in the hospital before implanting 2 make sure it would work 4 me.  We also found out that I was allergic to Morophine and the Hydormorph so the Fentanyl was the last try.  Thank God it worked!  I was in the hospital for 5 days though! 
      They don't allow u to have any meds simply because they need 2 know what will work 4 u (what setting the pump needs 2 b on.)  This makes complete sense however it SUCKS!  Lots of days with pain, everyone assumed when it was implanted (inc. me) that I would immediately be pain free.  The recovery time wasn't very fun either.  I was much more sore than I thought, it feels like you have a HUGE machine in your gut and that if U move it will just fall out!!

      HOWEVER, all of that aside, it was Heaven sent.  I will not live w/out it no matter what!  I would suggest if ur doct. does it like mine that you just keep those increase appts. every week or 2 (opposed to waiting once a month or so)

      I too am still trying to get to the pain free level, if that is possible.  I still have so much I want to do (like Nursing school - my dream), but living with the pain I live with now is minimal compared to what it was in November.

      Good luck!!  I say GO FOR IT as soon as you can, just be prepared for the time it takes and remember everyone is different.!!

      :0)  Gina

    • Bill
      Aug. 29, 2007

      Thanks for the response and advice Gina.

      I haven't gone through anything that was "smooth" in the 8 years since my first disc blow out but I'll clear more of my calendar than I thought I'd need to.  I am hoping the morph med will work but I have been on Fentynal in patch form and it worked ok for me.  No rejection just not...

      RHMLucky777

      Read More

      Thanks for the response and advice Gina.

      I haven't gone through anything that was "smooth" in the 8 years since my first disc blow out but I'll clear more of my calendar than I thought I'd need to.  I am hoping the morph med will work but I have been on Fentynal in patch form and it worked ok for me.  No rejection just not as effective as oxycontin for steady pain med delivery.

      Your advice about making weekly visits to make it all work at the beginning is helpful.  It is a 1 1/2 hour drive so I'll have to get some friends lined up to help as my wife can't take too much time off.

      Question 1: When you went for the "trial" were you just in the hospital for a couple of days with the external pump (if you even did it this way) and then went home with it externally for some trial period?

      Or did they implant it right then?

      I meet with my doctor next week for a pre-opt visit and blood testing, etc.  I was just wondering how your doctor proceeded.

       

      Question 2: Did you/ do you have breakthrough pain meds?

      Last Question: Obviously feel free to answer only what you want but what have the differences been before and after?

      What level of meds were you on?

      How much more active are you now?

      Thanks, Bill

    • Mattsmon
      Sep. 01, 2007

      Hi, Bill.  I was reading about Gina's progress with the pump and saw your entries and thought I might try to answer some of your questions.  I have the  same horrible story as most of us finally diagnosed with "Failed Back Syndrome".  Lots of hardware and surgeries and COLLAPSED hardware that is still in there.  I'm...

      RHMLucky777

      Read More

      Hi, Bill.  I was reading about Gina's progress with the pump and saw your entries and thought I might try to answer some of your questions.  I have the  same horrible story as most of us finally diagnosed with "Failed Back Syndrome".  Lots of hardware and surgeries and COLLAPSED hardware that is still in there.  I'm sure scar tissue just rounds out all of that, dwelling in our bodies!   I have had my pain pump for 5 years now and should be up for a battery change soon.   Prior to the pump I journied through 13 years of blocks, injections, psychiatrists (who used to be the only ones able to prescribe our meds longterm) "work hardening programs" and on and on and on.  Through the grace of God my pain management person sent me for a "trial" implant to see how it might work.  At that time, I was up to about 10 methadone a day along with neuro kinds of drugs for nerve pain, anti-depressants for depression, etc.  It was a wonder I could walk through my very detailed days.  As you and I know, when you are using the drugs for PAIN RELIEF they are metabolized very differently in the body than if we were just trying to get "High".  Unfortunately, as with anything else, the more you rely on, the more and more it will take FOR your body to function at the same level.  The whole "addiction vs. dependence" debate drives me to utter distraction!!  A few bad eggs ruin it for the rest of us who need those drugs at THERAPUTIC doses simply to go about our daily lives.  Back to the pump.....my doctor had it placed in me in the hospital and I was only there overnight.  I did not know how this was going to provide much accurate  information to either of us as my back was open, I was prone on a hospital bed, unable to really move or perform in any way to see if it DID help.  HOWEVER, I just used my better judgement and figured that if my insurance carrier was going to pay for it, I was going to get it.  I had NO LUCK with the TENS unit and no intention of trying an internal nerve stimulator.  I don't know of many who have good luck with those......I hope somebody does, as they appear to be fairly popular here in Texas.  The road to obtaining WHAT MEDICINE AND DOSEAGE will work for you can be easy and short or long and drawn out or somewhere inbetween.  You and your doctor will arrange a fairly often schedule for the first few weeks to determine where it needs to

      be.  I only have morphine in my pump---there are various meds that can go in and in different doses.  There is also the opportunity for your dose to be fairly regular during the day and then getting a "boost" at night if that's when you need more relief.  I did NOT do well on Fentanyl so I'm glad that lady has found something that works for her.   There are a few pieces of advice I would share from my procedure--First, mine was an overnight ONE DAY hospital stay where I pretty much lay flat in bed....it's almost impossible to determine whether you ARE indeed getting better relief or not---I would request (and I think your insurance will be the final judge) a different kind of trial, and I know lots of people have them.  The stay is longer and you are much more mobile.....that way you CAN tell if it helps .  Secondly, I don't know what your body type is but it DOES feel very "weird" to have a foreign object lolling around in  your gut for a while.  You stand up and you think it's going to fall out or you turn quickly and think that it poked you.  Since we humans can adjust to pretty much ANY circumstance when needed, I guarantee, you WILL get used to it and it will just become a part of you where there will NEVER AGAIN be a flat stomach!!  Thirdly, my daily pain scale prior to the pump was usually an 8.  On the pump I got down to a 2---I thought I died and went to Heaven.  The goal of pain management is to "manage" and so like the rest of us you may already know that full relief is usually never achieved, but depending where on the scale your daily life is, I will almost guarantee the scale will slide in your favor for once.  Keep these two things in mind---the amount of oral meds a patient takes to get to similar relief as the pump provides is like trying to compare apples and oranges.  Oral medications must be digested first in the body----what goes in the pump is miniscule compared to oral drugs AND it goes directly to the source, thereby working more efficiently at obtaining relief for you.  I will caution you about the level of relief I initially experienced....It was wonderful.....I felt alive and human again and when I do, usually the snotty little bird from Neverland shoots his arrow right where my metal cages are collapsed to remind me that there is the bad/difficult that comes right along with the good.  When there is too much medication going into the pump too often, there is a "thing" called a GRANULOMA that can form (cyst like at the tip of the wire) that can wreak havoc with your body, your pump, your immune system and general well being.  Get the pump---don't be afraid---with the cost sky rocketing every minute, if you DO have the means via insurance, private or whatever, DO IT.  Once it's there, you have the hard part over.  Even if there comes a time that you don't need it, you can still have saline solution run through it to keep it viable.  Five years ago, mine was over $55,000.  The newer ones hold more meds and instead of going as I do for refills every 6 - 8 weeks, their reservoire can hold out longer.  Does it hurt to get a refill?  NO.  Big needle, tiny stick, little bandaid.  And to answer your last question, do I still take oral meds for breakthrough pain?  YES.  I take Dilaudid, but let me put this in perspective before I let you go....Prior to pump placement, I took on a DAILY basis 10 methadone, 14 percocet, neurontin (seizure drug for nerve ending pain---didn't work for me), Paxil, muscle relaxers, Ambien for sleeping, Protonix for stomach pain due to severe constipation (from the drugs and if you have never experienced that, WATCH OUT.),many laxatives and stool softeners, anxiety meds in addition to facet injections, which never worked for me, either.  AND I use the Lidocaine patches as well.  CURRENTLY, I have 9.0 mg. in my pump that flows equally for 24 hours and I take one 4 mg. Dilaudid tablet once every two or three days with one bowl of Kellogg's All Bran Yogurt Bites.  My daily pain scale is a 5.  I can live and thrive with that.  Ask lots of questions and if you cannot be your own advocate, please choose a loved one to be it for you.  Best of luck and I'd love to hear how it goes for you!!  THERE IS LIFE OUT THERE!

      Best,

      Mattsmom

       

    • Bill
      Sep. 01, 2007

      Wow, how do I thank you for the detailed reply.  You hit the nail on the head every other sentence about both the 8 years of operations, procedures and pain that I have had and all the pain meds I have been on/trying or thought about!

      I am having the trial in a hospital.  It is a 36-48 hour trial.  I have a good insurance program but I will check...

      RHMLucky777

      Read More

      Wow, how do I thank you for the detailed reply.  You hit the nail on the head every other sentence about both the 8 years of operations, procedures and pain that I have had and all the pain meds I have been on/trying or thought about!

      I am having the trial in a hospital.  It is a 36-48 hour trial.  I have a good insurance program but I will check it out to make sure what our costs will be in the end.

      You note also made me think of all the people who live with serious pain day after day.  They either have lousey doctors(I've had a very good GP and excellect surgeon) or they are too beaten down by the system to really get what they need.  I am willing to be assertive.  My wife comes with me to the big meetings pre & post surgery and she is willing to ask the hard questions or be pushy.  I have walked away from doctors who wouldn't take me seriously and I have to admitt, I am a pastor and people have just been nicer in some cases.  The way I found the doctor for the pain pump was through another pastor in a neighboring state and this doctor goes to his church.  In these ways I am really blessed.  I live in CT and have Yale only about an hour away and I have gone to Mass General for second opinions that helped me confirm the need for the fusion I had in 2001.  Stable fusion but now bulging disc above my fusion and lots of other pain generators.

      Anyway, I'm rambling - thanks again for taking the time to answer me with so much information.  I go on Tuesday for the pre-trial meeting.  I have the trial  starting 9/19 and the pump soon after if I don't change my mind.  Your post helped me to stay on course, get over some fears and move on to give a try.  Worst that can happen is another bad experience of trying something, take it out and back on the oral meds.

      I pray that your health continues.

      peace, Bill

    • Mattsmon
      Sep. 01, 2007

      Best of luck on your trial.....please give it your best shot.  At first I wasn't sure at all if I had done the right thing, but reflecting back on all the years and the length of time it takes to "stay the course" as they say, convinces me that YOU are also going in the right direction.  If I can give you one last gentle push in the...

      RHMLucky777

      Read More

      Best of luck on your trial.....please give it your best shot.  At first I wasn't sure at all if I had done the right thing, but reflecting back on all the years and the length of time it takes to "stay the course" as they say, convinces me that YOU are also going in the right direction.  If I can give you one last gentle push in the pump direction, it is this.......In this country, people such as yourself and myself and  our pain population are at the complete mercy of the medical community.  At any given time, that particular community may decide to again take the large doses (therapuetic amounts) away from us and out of reach for people in true agony.   If you have the pump you are in the best position of all.  You CANNOT (mine, anyway) manipulate the amount of drug in the pump yourself, therefore, it will always be controlled by a specialist.  Even if the FDA reigns in the doctors who DO manage, because of their real knowledge of pain to jeapordize their OWN licenses in order to help us again (which they did several years ago, but Thank God it was overturned) as a pump patient, you WILL still have the ability to have those kinds of meds coursing through your system to provide relief, while those who do not have a pump will be unable to get the large doses of the kinds of meds they need.  Not to beat a dead horse, but the amount of meds will be drastically different for you.  God Bless you and your family and I pray that this trial goes very well for you.  It is only a trial.......as in life, truly accepting and getting used to a long term commitment takes patience and perseverance as you know.  I grew up in Boston, and have many friends who went to Yale......you are in great hands!

      Matt'smom

    • tricia
      Apr. 22, 2010

      Hi i have been reading all posts , i have had 80%of lg intestin removed ,sigmoid also.

      last year fusion in back it failed so needless to say im in surround sound pain .i have allowed P>M>doc to do hypogastic block tons epidurials spinal cord stimulator nerve blocks all meds except fentyall do not help i haVE BEEN BEGGING for fentyal pump 2 years now he...

      RHMLucky777

      Read More

      Hi i have been reading all posts , i have had 80%of lg intestin removed ,sigmoid also.

      last year fusion in back it failed so needless to say im in surround sound pain .i have allowed P>M>doc to do hypogastic block tons epidurials spinal cord stimulator nerve blocks all meds except fentyall do not help i haVE BEEN BEGGING for fentyal pump 2 years now he wants mte to go see P.M. doc i never met. I am at wits end .why is he doing this he says let my try this if no help i will do pump .then says try this As you all know pain consumes your life drains it away it is all there every day you wake up day after day . Not being rude but there are not many people who could have as much pain as me and keep getting up and going on . Why do doc make us suffer this is 2010 all you here is no need to suffer, on duragics 100mcg and 50 mcg percets soma voltram

      with all intestin gone constipation is scary had 2 obstructions to date .is there a reason im going threw this with doc are all P.M docs this way i have stacks of records that show all the above and they are going to be life long pain not going to get better just need to manage is all i want . my life has just left i hardly remember me from 5 yrs ago my kids are like mom you are not you anymore it is hard for anyone not living it to understand .My kids are grown i was a very tough lady have been redused to half  im hanging in i know the pump will help . I had fentora it worked great with patch subligul but they are all so expensive my insurance changed and i can not afford them .so i chew pain pills for fear of constipation it then goes rite threw system. sorry for the ranting just needed to ask if there is a way to get the right doc for the pump Allentown Pa is the closest large town if anyone knows a good P.M doctor there who is good at helping and believes in the pump .Please advise if not thank you for reading ..Tricia

    • Anonymous
      Anonymous
      Oct. 10, 2008

      I have had the pump for one year and I have developed sleep apnea.  The medication, dilaudid makes my brain forget to tell me to breath.  I have had good pain control but  I want it removed.  My doctor is giving me a hard time and wants me to keep it and says the sleep specialist/lung specialist is wrong.  I have read much information...

      RHMLucky777

      Read More

      I have had the pump for one year and I have developed sleep apnea.  The medication, dilaudid makes my brain forget to tell me to breath.  I have had good pain control but  I want it removed.  My doctor is giving me a hard time and wants me to keep it and says the sleep specialist/lung specialist is wrong.  I have read much information that medication with pain pumps does cause sleep apnea.  I am so sleepy all the time and my life has been worse due to this probllem.  I wish I had never got the pump.  I will get it taken out even if I have to have a fit.  I will find another doctor.   I am taking 1.50 mg per day and that is a small amount.  Be aware of this and good luck to you.

      If you haven't done it yet think on it longer.

    • Anonymous
      Wendi
      May. 27, 2010

      This is to the person who has the pain pump then developed central sleep apnea.  His pain doc is right.  Most likey it was not caused by such a small amount of meds.  I just had my 3rd sleep study and found out I had Complex Central Sleep Apnea.  I am on a ridiculous amount of meds.  240 mgs. of oxycodone.  It's like taking 24...

      RHMLucky777

      Read More

      This is to the person who has the pain pump then developed central sleep apnea.  His pain doc is right.  Most likey it was not caused by such a small amount of meds.  I just had my 3rd sleep study and found out I had Complex Central Sleep Apnea.  I am on a ridiculous amount of meds.  240 mgs. of oxycodone.  It's like taking 24 10 mg. percocets without the tylenol.  Like everyone else on this site I have been through the gamit starting 30 years ago after I was hit head on by a drunk driver in a truck.  The book gets very long so I won't bore you, however I am now starting the trials with the pain pump.  So far morphorine and hydromorphone haven't worked, which I figured would happen and am waiting for the trial of fentanyal since the patches worked a few years ago.  However, the small amount of meds like you are one would not cause that thype of sleep apnea.  There are several other reasons which I also am exploring.  My biggest fear that it is caused by arthritis in my neck.  Tonight os the first night I'm using the V Pap and am actually excited as if you put horrible dhronic pain along without ever getting any sleep is hell.

      Good luck to all. 

      Wendi

    • viv
      viv
      Aug. 02, 2013

      Hi Anonimous...I have gone thru it all.  My first pump was recalled and I decided not to replace.  I thought I would go crazy from the pain.  Problem with pain:  you FORGET what it used to feel like before you had some relief.  I know I DID.  So, I had to beg for a new pump after a few months.  It was hell getting the insurance...

      RHMLucky777

      Read More

      Hi Anonimous...I have gone thru it all.  My first pump was recalled and I decided not to replace.  I thought I would go crazy from the pain.  Problem with pain:  you FORGET what it used to feel like before you had some relief.  I know I DID.  So, I had to beg for a new pump after a few months.  It was hell getting the insurance to approve it.  Then, they put in a huge pump (I'm a small person), which felt as if it would fall out anytime.  Lived with it for a year and the site got so very red from extracting fluid in the surgery site, and another surgery to try to keep pump in place;  finally, I guess it was agreed that I needed the small pump.  I again reconsidered, this was my 4th surgery! But I decided it was better than "not living" because of extreme pain.  Now I have horrible sweats and don't know if that is a result of one of the other meds they have added to my pump and wish someone would tell me if they have same side effect???  If you see anything in this regard, please advise!  Hope this is of some help :)  My prayers for you...

    • Anonymous
      Guest103
      Nov. 21, 2012

      I am glad some of you are making progress with the pain pump. I am in my 15th month and still do not have the pain under control. I started with Dilaudid and it made me swell so they went to Fentanyl. The dosage is about 1/7th the max. I also take dilaudid 4mg 4times a day, or twice a day I actually take two at a time, it works better for me.

      Today I just had...

      RHMLucky777

      Read More

      I am glad some of you are making progress with the pain pump. I am in my 15th month and still do not have the pain under control. I started with Dilaudid and it made me swell so they went to Fentanyl. The dosage is about 1/7th the max. I also take dilaudid 4mg 4times a day, or twice a day I actually take two at a time, it works better for me.

      Today I just had the Bolis upped and it will take almost 45 hours to take effect, so in the meantime I cannot use a Bolis. I have been on 8 Bolis's a day for over 5 months. When I asked for some breakthrough meds to get me through the 45 hours the Dr. refused to comply with my wishes and said just double up on the Dilaudid which may as well be asprin. I am so tired of these pain management ripoffs, they never see the patient it's always a pain pump tech, or if you are lucky a Nurse Prac. who is basically useless because they aren't going to address your pain or potential withdrawl. They are concerned with their income and answering to the State Atty, General's office instead of addressing the continuing pain of a patient.

      So here I am on a Holiday weekend knowing I am going to be either in pain or irratable because I will not have the usual 8 injections a day with the pump. It's pathetic with all the morons out there that have abused meds and have made it hard for the ones that acutally need the stuff able to get it. I have played by the rules, for 3+ years on oral meds, to backing off those and going with a pump I have played by the rules and never abused the medications but when you are in pain you will try about anything to get rest or get some relaxation for a short period of time.

      So I can now go out and buy a legal bottle of Bourbon and drink the pain away or try some marijuana (which I think should be legal for anyone that wants it in pain or not) because some inconsiderate pain mgt doc is more concerned about his audits or whatever. It's pathetic.

    • Anonymous
      guest103
      Nov. 21, 2012

      Oh I am in Louisville too and I bet I have the same pain mgm. quack that some of you do. Suburban Medical plaza??? Ring a bell?

    • Regina in Louisville
      Nov. 21, 2012

      I dont know why you would not be able to use a bolus just because you had an increase.  Example, I went to dr last week and had a small increase to my pump and ptm, however 2 hours later I could give myself a bolus so that doesn't make sense.  I know it is hard, I have been dealing with chronic pain for about 10 years now, and am starting into my...

      RHMLucky777

      Read More

      I dont know why you would not be able to use a bolus just because you had an increase.  Example, I went to dr last week and had a small increase to my pump and ptm, however 2 hours later I could give myself a bolus so that doesn't make sense.  I know it is hard, I have been dealing with chronic pain for about 10 years now, and am starting into my 7th year with a pain pump.  I have taken pills, before pump, and know what you are going through.  Please know that the dr have your best interest at heart, esp if you go to Dr. Reasor.  I am getting ready to start my 3rd semester nursing and would never have been able to do it without their help and willingness to get me off pain pills.  Your body only builds a tolerance to them and you will ALWAYS need more, no matter what, not to mention the awful side effects and harsh toll it takes on many other organs in your body.  I am not saying fentanyl pump is healthy, but far better and more controlled than pills.  i've had too many friends die from od on pills, but never from a pump.  Living with chronic pain sucks....BAD!  The trick is to find what makes you happy, mine was nursing school and fullfilling my dream.  I actually have less pain when my mind is very busy, than when I am just laying around thinking about how bad it hurts.  I have also developed a closer relationship with God and my life had done nothing but get better.  I am not trying to preach or discern you.  Please believe me when I say I have been there.  I had a 2 and 3 year old at the darkest point in my life and literally wanted to die instead of live in that kind of pain.  But it wasn't until I realized that I had to get up and move, enjoy my kids and make the most out of what I had been given, that I really started to notice the pain subside a bit.  Being in nursing I have seen how truly blessed I really am.  It could always be worse.  Best of luck to you,

      Prayers!,

      Gina

    • Regina in Louisville
      Nov. 21, 2012

      I dont know why you would not be able to use a bolus just because you had an increase.  Example, I went to dr last week and had a small increase to my pump and ptm, however 2 hours later I could give myself a bolus so that doesn't make sense.  I know it is hard, I have been dealing with chronic pain for about 10 years now, and am starting into my...

      RHMLucky777

      Read More

      I dont know why you would not be able to use a bolus just because you had an increase.  Example, I went to dr last week and had a small increase to my pump and ptm, however 2 hours later I could give myself a bolus so that doesn't make sense.  I know it is hard, I have been dealing with chronic pain for about 10 years now, and am starting into my 7th year with a pain pump.  I have taken pills, before pump, and know what you are going through.  Please know that the dr have your best interest at heart, esp if you go to Dr. Reasor.  I am getting ready to start my 3rd semester nursing and would never have been able to do it without their help and willingness to get me off pain pills.  Your body only builds a tolerance to them and you will ALWAYS need more, no matter what, not to mention the awful side effects and harsh toll it takes on many other organs in your body.  I am not saying fentanyl pump is healthy, but far better and more controlled than pills.  i've had too many friends die from od on pills, but never from a pump.  Living with chronic pain sucks....BAD!  The trick is to find what makes you happy, mine was nursing school and fullfilling my dream.  I actually have less pain when my mind is very busy, than when I am just laying around thinking about how bad it hurts.  I have also developed a closer relationship with God and my life had done nothing but get better.  I am not trying to preach or discern you.  Please believe me when I say I have been there.  I had a 2 and 3 year old at the darkest point in my life and literally wanted to die instead of live in that kind of pain.  But it wasn't until I realized that I had to get up and move, enjoy my kids and make the most out of what I had been given, that I really started to notice the pain subside a bit.  Being in nursing I have seen how truly blessed I really am.  It could always be worse.  Best of luck to you,

      Prayers!,

      Gina

    • Regina in Louisville
      Sep. 03, 2007

      Hey Bill,

      I did not have anything after the trial to take home, too dangerous for the external to be carrying it around I guess.  The trial was in the hospital only, for some reason no pain meds when I came home.

      I was able to drive myself to all of my appts to have the pump increases, I have a 2 year old and I always had her with me as well.  You should...

      RHMLucky777

      Read More

      Hey Bill,

      I did not have anything after the trial to take home, too dangerous for the external to be carrying it around I guess.  The trial was in the hospital only, for some reason no pain meds when I came home.

      I was able to drive myself to all of my appts to have the pump increases, I have a 2 year old and I always had her with me as well.  You should be able to take yourself.

      I went from very little activity, lots of laying down, and taking 3 percocet and having VERY LITTLE relief, to running/jogging about 4 miles a day, as well as cleaning and running after my 2 yr old.  My doct will NOT give anything for break thru pain, and he drug tests to make sure u r not doing anything, too dangerous for risk of overdose.

      Good LUck!

    • Anonymous
      Kelly
      Jul. 24, 2008

      Gina,

       

       If you can email me, I have a question on who your doctor was who decided on the pump. I see that you are from Louisville and I'm assuming that's Louisville, KY. And my mother lives in New Albany, IN and is getting her pump for the second time. They removed it last year because the pocket where the they put the pump got infected. My email...

      RHMLucky777

      Read More

      Gina,

       

       If you can email me, I have a question on who your doctor was who decided on the pump. I see that you are from Louisville and I'm assuming that's Louisville, KY. And my mother lives in New Albany, IN and is getting her pump for the second time. They removed it last year because the pocket where the they put the pump got infected. My email is Kelloyal@aol.com.

       

      Thank you,

      Kelly

    • 1KySwede
      May. 27, 2010

      Hi,  I had a pain pump implanted last fall.  My pain doc is in Louisville, and my trial and subsequent implant were done at a Louisville hospital.  If I can help you with any information, please feel free to contact me.  I've been very glad I got the pain pump! 

       

      Kris

      <!--Session data-->

    • viv
      viv
      Aug. 02, 2013

      I have 4 diff meds in my pump:  Hydromorphone, Bupivicaine, Fentanyl and Clonidine.  My first implant (small pump) only had the hydro + Bupivicaine.  However, for over a year now I am completely disfunctional due to extreme sweats every time I move out of bed.  My home is at 65 degrees ALL THE TIME, but if I as much as get up for a shower,...

      RHMLucky777

      Read More

      I have 4 diff meds in my pump:  Hydromorphone, Bupivicaine, Fentanyl and Clonidine.  My first implant (small pump) only had the hydro + Bupivicaine.  However, for over a year now I am completely disfunctional due to extreme sweats every time I move out of bed.  My home is at 65 degrees ALL THE TIME, but if I as much as get up for a shower, I get all wet again.  It's horrible.  The only change I can tell is this started happening after another doctor added the Fentanyl and Clonidine.  It seems that Fentanyl can cause these extreme sweats, but of course no way to tell.  I will ask my doctor not to include in mix next refill; we have agreed.  However, does anybody know if I could have bad withdrawals from taking it out of the mix? (of course, I will check with doctor, but he doesn't seem to have much time!).  It is a very small quantity compared to the first two meds I always got, but I'm concerned.  HAS ANYBODY WITH THE PUMP SUFFERED FROM THESE HORRIBLE SWEATS?  I CANNOT FUNCTION! Pls reply if you can give any info re above??  Thanks and prayers for you...

    • JCW11
      Nov. 28, 2011

      Just a few observations from someone that has had the pump for about 5 years. You are absolutly right to let your doctor set the infusion rate. I started with morphine but had a reaction to it so the doctor switched to Fentynl which worked very well. As with Gina I had my life back after 7 years of suffering with extreme chronic pain. Having tried facet injections,...

      RHMLucky777

      Read More

      Just a few observations from someone that has had the pump for about 5 years. You are absolutly right to let your doctor set the infusion rate. I started with morphine but had a reaction to it so the doctor switched to Fentynl which worked very well. As with Gina I had my life back after 7 years of suffering with extreme chronic pain. Having tried facet injections, patches, electric stimulator, and finally after two Interbody fusions with all the hardware etc., i could excersise 2-3 times a day, work around the house , take vacations, enjoy my grandaughters etc. but a warning , make sure that your insurance will cover your medtronic for the duration. I was left in the dark and my insurance stopped paying for the refills and I was left to pay what started off at around 15,000 dollars a year and with the doctor helped by lowering the delivery rate to around 6,000 dollars a year until I had no money at which time the doctor is filling it with saline free of charge. Had I know the cost was so high and the insurance would run out I would never have done the pump. Just some inormation.

    • viv
      viv
      Aug. 02, 2013

      I was also afraid about the cost.  Lost private insurance.  However, due to my disability (and you must also be disabled??!!) Medicare covers it.  I had to turn in my Medicare for a Clinic (whatever they are called, the cheapest health insurance), but by law they had to care for my pump and found a doctor to refilll and Medicare pays for the...

      RHMLucky777

      Read More

      I was also afraid about the cost.  Lost private insurance.  However, due to my disability (and you must also be disabled??!!) Medicare covers it.  I had to turn in my Medicare for a Clinic (whatever they are called, the cheapest health insurance), but by law they had to care for my pump and found a doctor to refilll and Medicare pays for the medicine; so I have kept it.  They even replaced the pump and EVERYTHING was paid for.  Please investigate about disability and Medicare insurance??  They saved me.

    • Gloria
      Jan. 01, 2013

      I also have a pain pump with fentanyl refilled every 6 weeks.  Originally I had a nerve stimulator that developed a blood clot 2 days after the the implant.  Needless to say, I was totally useless as I could no longer walk as the blood clot traveled to my spinal cord and severed it and  I could no longer walk.  After 4 weeks in the hospital...

      RHMLucky777

      Read More

      I also have a pain pump with fentanyl refilled every 6 weeks.  Originally I had a nerve stimulator that developed a blood clot 2 days after the the implant.  Needless to say, I was totally useless as I could no longer walk as the blood clot traveled to my spinal cord and severed it and  I could no longer walk.  After 4 weeks in the hospital I was able to walk with a walker.  I still had  severe pain and then had a pain pump inserted.  It has been three years and I now can walk and only use my cain when I have to walk up a steep hill. I still have a lot of pain going down both hips and stopping at my toes on each leg.   I will be having surgery for a RADIO FREQUENCY ABLASION.  This particular procedure will zap the nerves going down both hips to my feet. If this procedure does not work I will just have to keep using my Fentanyl pain pump.  I am not satisfied with the medical group that is responsible for refilling my pump every six weeks.  Very poor communication with the staff that does my refills.  I just get the refill every 6 weeks, then I am out the door.   I have requested another pain management group that will at least answer my questions.  I did find out that once that pump is inserted in your body, it is totally under their control as there are not a lot of doctors that do the pain pumps.  I did contact my primary physician and asked him to find me another physician.  I really don't want to take anymore meds as I was sleep walking and suffered a lot of memory loss which is gradually comming back after stopping all the meds that was given to me.  So, now I am just using the pain pump drip and sometimes I will hae to give myself another dose so I can sleep better.  My primary physician is also sending me to biofeed back with a class of ten other people suffering  hard to control pain problems.  He says that this bio feedback group is very successful.  Hope it works for me as I just cannot continue taking those drugs that make my life  miserable.  I am very strong willed and I know that I can beat the pain problem as I was really a special case when I started walking again after the spinal cord seperation crippled me.  I do have spinal stenosis, but I can handle it.  Hope someone else can get the relief that is desperately needed to live a healthy life style.

    • Regina in Louisville
      Jan. 02, 2013

      Please continue to post your progress, I would like to get off of the pain pump one day as well but can't take the pain at this point. 

      Thanks

      Gina