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Concerns about Medtronic pain pump

AnonymousUserAAnonymousUser Posts: 51,465
edited 06/11/2012 - 8:23 AM in Pain Management
Wanted to know if anyone has had the Medtronic infusion pump. I have my second apppointment tomorrow with my Doctor. Did some research and found that this type of pump was recalled but wanted more info. on it. Kind of worried about the procedure and possible serious and possibly deadly side effects. Also, wondered if it would be better to take oral morphine rather than have the pump installed. If anyone has had experience with stuff like this please respond to this topic.




currently on Fentanyl patch, taking percocet, skelaxin, neurotin,cymbalta, and ambien
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Comments

  • What is a medtronic pump? Does it dispence meds right in to your body?
  • You can look on their website because they have the latest models, and more detail info on how they work. There was a string of post here on SH a few months ago about the good, bad , and the ugly, out of the mouths of people who already have it, or have tried it in the past.
    The pump delivers the drug (usually Morphine, maybe they throw in an anti inflammatory) directly in the epidural space. It mixes in with the spinal fluid and target directly the problem area. This way, you take a very small amount of Morphine (Like 2-5 mg) instead of maybe 60 mg of it in pill form a day. They hope that you won't need any oral meds after, but some people still need to take break thru meds. With the spinal pump, the hope is that you should have hardly no side effects because it's going directly instead of systemically throughout your body. I have read a couple cases here where a couple people were really sick and nauseated. You have to go in regularly for them to inject the meds thru your skin, and hope to goodness they hit the portal the first time ( the pump can role around if it hasn't settled down inside your body.) If things don't work out, they have to go in surgically to remove it. Oh, did I mention you have to have a psych evaluation before, and they do a trial first.

    I learned about this when I was on their site reading about their neurostimulator trial. I went thru that and had compilications. I hope I won't have to do that again.

    Jiftxxx, what problems do you have? It must real bad for them to put in a pump. I had a fusion close to 3 months ago, and I too take Fentanyl 50 every 2 days, Norco and other meds for back pain and persistent sciatica. This is my second surgery.
  • I've had an implant since 4/06. It was the best thing that has happened in my quest to live as close to a normal life as I can with chronic pain. The recent recall is not because of a defect with the pumps but rather an issue with spinal growths called granulomas that have been found at the injection sites of the catheters. It was found that certain models were more likely to result in these growths. Granuloma growth is related to the volume of medicine infused and the length of time you have the implant. There are three common narcotics used in pumps. Morphine, which requires the most volume, dilaudid which is roughly four times stronger by volume and fentanyl which is roughly 100 times stronger by volume. There are other drugs commonly mixed with the narcotics for spasm relief and additional pain control. In my case I have a cocktail of dilaudid and bupivicaine. I started out with morphine and bupivicaine but as my back pain grew worse rather than increase the dosage of morphine my doctor has switched me over to dilaudid. I get equal pain relief with less drug. I go into the clinic around every 10-12 weeks to have the pump checked and refilled. It is one less prescription to worry about. The battery is estimated to last 5-6 years and when it's needed I'll go into the hospital for a simple surgery and an overnight hospital stay followed by stitch removal a week later. I'll be good for another 5 yrs.

    In the past year there has been a new drug approved for use with the pumps called Prialt. It is made from the venom of the ocean cone snail, is non narcotic and has had mixed acceptance. Prialt is very expensive and there are report of some serious side effects including psychotic episodes.

    I am very happy with the decision to get this implant. It has freed me from worrying about oral meds, clock watching for my next dose and the fear of running out of meds and sliding into withdrawal. I rarely think about medication through the course of a typical day.
  • I just had my 2nd Medtronics Pump implanted in May 2008....the first pump lasted 5 years and got me off all oral pain meds.....the new pump does the same, but the time in between refills is now every 4 months vs. 6-8 weeks!!

    I can only speak for myself, but after 5 failed L4-S1 fusions, cages, broken rods and screws, every injection known to man and all the oral "zombie" pain meds.....THIS IS WAY BETTER!!!!!!

    It is done as an outpatient surgery, and the replacement surgery is even easier......it is about the size of a hockey puck and is just under the skin below my left ribcage. If you have gone through any back procedures/surgeries in the past, than you will think this one is no problem!

    I was on all the Fentanyl patches, Morphine, Norco, muscle relaxers, anti-depressants, etc etc etc........you don't need them, or atleast not near as many, with the pump! The amount of medication used in the pump is about 1/300th of the amount of one oral pain pill! And since the pump leads go directly into your spinal fluid, it just numbs the pain and you don't feel "drugged" at all! IT'S AMAZING!!

    I will still occasionally have some break-thru pain, usually at night or if I've been doing too much...I'll take a norco once in awhile if needed...otherwise, I can chase my 2 1/2 yr old around all day-as a single mom! I could have never done that 6 years ago!!!

    Don't be afraid...atleast do the research!
  • I note there is no mention of what happens when/if you lose your insurance and can no longer afford to have the pain pump refilled. This is a very important issue and you should always consider this possibility, as the pain pump is virtually forever. This happened to me!

    Taking oral narcotics is very dangerous and, no matter how you think you will do, you become addicted. I was taking 360 mg. of morphone daily & my life was that of a zombie. I gained impossible amounts of weight & lived like a recluse. I finally wanted to get my life in order & my pain specialist said I would have to enter a drug treatment program! I refused & weaned myself from the morphine, little by little, I also lost 103 lbs. While I still have my pain, I watch what I do and how I do it & take Excedrin for Back and Body. Nothing is as bad as living as an addict but it takes a lot to do what I did. If you need help, by all means ask for it and get it!
  • I went to see my pain specialist a couple of weeks ago. He asked me if I had ever considered a pain pump. I had read about them, but I figured it was something that I would never be able to afford. I told the doc that we shouldn't discuss it because I didn't want to get my hopes up about something that wouldn't happen. Long story longer, they asked me if I would be interested in participating in a research study. I "jump through hoops" keeping records, appointments, diaries, etc., I get the pain pump/surgery/medication for free, for life. Medtronics is wanting to see if neurontin will control the pain. I've been in so much pain for so many years, I just assumed I would have to live like this forever. I started the pre-testing yesterday. The "mental evaluation" is much ado about nothing. I'm not 100% guaranteed to be accepted yet, but it's looking very good. Of course I am nervous as hell, but excited too.
  • I love your Avatar and screen name! Very cool! indeed!

    I hope you get accepted into the trial, that would be awesome if they do indeed promise to treat you and your pump for life! Wow!

    I am in the waiting for a Permanent SCS, jumped through all the other hoops, just need to get to May 4th now!

    Is there any details on the study you are geting into?
    I am sure there are others here that may be interested in trying for this. General details only as specific doctors and institutions in postings are against the rules here to keep the spammers at bay! You can PM people details if there is anything like that you think may help them.

    Welcome again! Hope you get accepted and you get the best of everything from the pain pump!

  • I have a question for those of you who have had the pump installed. I had mine installed about ten days ago though the chronic pain is being controlled, I am experiencing pulsating muscular pain in my lower back/gluteus medius down through my mid thigh. It only lasts for a few seconds, then goes away. It happens upon standing up or situations where my legs are stretched out such as when sitting in a recliner. I have seen some other web sites where there are some mentions of something possibly like this that should go away once my pump pain med level is adjusted and this is just my body getting used to the new "form" of treatment. He took me off of all other meds (pain, muscle relaxers, etc), until we get the morphine pump where it needs to be because neither of us wants anything to interfere with what should be a true reading. Has anyone experienced anything like these "spasms"? Is it part of the process that go away with additional meds or is this indicative of something else that may have been hidden by the pain for all these years (nerve studies, mylegrams were negative - but who knows ;p)

    I had spinal fusion two years ago at L4-L5 which helped, but the pain and spasms just never went away, even after facet injections, cortisone injections, therapy, rhizotomy, you name it. I was finally dx'd with arachnoiditis a couple of weeks ago after twelve years of this merry-go-round... I don't regret the pump implant. It has been a boon in just the short time it has been in. I am just at a loss for information as to what people experience in the days/weeks/months after their implants. Of course what you get from the implant manufacturer is propaganda, and many of my web searches turn up discussions on pump failures, not the healing process. Any information that anyone can give would be great!!! Thank you.
  • Spasms can come from any back surgery so I'd not be to concerned other than to figure out how to get them calmed down! I have gone through cycles of spasms and muscles crawing like they have a work in them since my initial accident and they seem to come back around treatment times!

    I had another bout when my SCS trial was implanted, so I'm not surprised you are having them after the painpump was implanted. esepcially if he did not add the muscle relaxer back into the concoction you get from the pump.

    just something to talk to the doctor about next time you can. Have you tried ice or walking it off?

    I'm glad to see you are not getting caught up in the storeis from those who have had failures etc, they can be overwhelming and let you lose site of successes!

    My sons exgirlfriends mother (SEGFM) had a trial that went well, so they did the permanent implant, it got infected, they removed it, waited, reimplanted it, complications, then the put her in inpatient rehab.
    Sounds horrible? No not to talk to SEGFM! She now lives at home, walks up stairs, goes out drives, gardens, attends her daughters concerts, all of it things she could not manage without her pump! Read her story and think how horrible, yet in the end this woman has her life back! She once told my wife and I that should it fail tomorrow she has gotten two years of life that she would have spent most of home in a bed or recliner if she had not gotten the pump.

    Anyway, keep the faith and ask questions, everyone acts different, somethings work for some people and not others.
    Keep trying to you find your thing!
  • I have tried ice, heat, stretching, etc, but nothing seems to make it better. I see my doctor on Monday, and will go over it with him then,

    I know part of my problem is my dx - arachnoiditits. Everything that was done over the years, the steroid shots, the facet injections, the myelograms, all made it worse. We finally figured out what was wrong when he recently tried to do a spinal tap and it took 14 tries to get a spot where fluid would flow freely - and the scariest thing is that I never felt a thing!! I took ten years to find a surgeon who would even consider my case, even though it was blatantly evident I needed surgery for a blown disk. I had at least four different orthopedic and neurosurgeons tell me that yes, I had a serious problem, but because of my age (I am now 33) they didn't want to operate "just yet". Their refusal to correct the problem led to additional disk problems with l3-l4 and l5-s1 as well as my sacral joint. I have severe nerve damage from the constant pressure of ten years of the bad disk at l4-l5. My current neurosurgeon was surprised I could still walk from the amount of the nerve damage done. I am wondering if these spasms are part of the healing process? Now that the pain and inflammation are getting under control with the pump, the nerves finally may have a chance to heal.(?) I know I am grasping here, but even my doctor is willing to admit that sometimes he doesn't know all the answers and that asking other patients is the way to go for ideas!

    I do have a lot of questions though.... Like Prialt - has anyone here had any experience/success with this versus morphine?

    Can doctors "mix" morphine and baclofen in the pump to control both the pain and the spasms?

    Does the constantly feeling tired ever go away, or is my body just trying to catch up on years of bad sleep due to the prior bad pain :p ???

    Does the pump set of detectors at airports?

    Is the pump replacement a pain (literally and figuratively)?

    Thanks for answering my questions...... Google is good, but not always does it provide the answers...
  • I would trade in the MS Contin for a Fentanyl patch but my Dr won't switch me and I take 120mg total for the day. Have you tried a higher dosage patch? I get about 5mg an hour with slow release Morpine. I still feel pain but not as bad. Anyway I wish that helps your pain more than your patch. It's good to research on this as well to meet others with the pump also. Thanks for the info Chighound. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • TO ME THERE IS NO COMPARISON TO THE ME BEFORE THE TRIAL PUMP AND THE TIME NOW.I AM BACK IN MISERY.IT WILL BE 3-4 WEEKS BEFORE THE PUMP IS IMPLANTED.THE DR HAS SAID NOTHING TO ME ABOUT THE PSYCHE EXAM.HE JUST SAID THAT I WOULD BE CONTACTED BY PHONE WHEN IT IS TIME FOR THE PERMENENT PUMP TO BE IMPLANTED.I CAN HONESTLY SAY I GOT 80% RELIEF FROM THE TRIAL PERIOD OF 9DAYS.I DID HAVE TO TAKE LORCET 3 TIMES A DAY FOR THE REALLY PAINFUL PERIODS DURING THE DAY.MY WORST TIME IS AT NIGHT,TRYING TO GET SOME SLEEP,THEN AGAIN THE 1ST THING IN THE MORNINGS.BUT I HAPPILY LOOK FORWARD TO THE PUMP BEING PLACED.
    ANYONE THAT CAN TOLERATE THIS SYSTEM OF PAIN RELIEF SHOULD GO FOR IT.I WAS SO TIRED OF CLOCK WATCHING TO BE ABLE TO TAKE FURTHER ORAL MEDS.WITH THE TRAIL PUMP I KINDA FORGOT ABOUT EVEN HAVING ORAL MEDS TO TAKE.ITS NOT ONLY A PHYSICAL RELIEF BUT ALSO A MENTAL RELUEF.NOT HAVING THE CRUEL SIDE EFFECTS OF THE ORAL MEDS ALSO.
    SO IF YOU THINK THIS IS RIGHT FOR YOU,GO FOR IT.
  • I am new to this blog and have read many of the comments about those of you who have either had a trial or will have the infusion pump surgically inserted. I have had mine since January 2009. I had to have a revision in March of 2009 due to the pump turning or flipping upside down and leaving no access to the port. Since that time, I have been on a Dilaudid only infusion 24/7 and have been off oral meds (Oxy-Contin) for 2 months. I still have breakthrough pain, but worse than that, I have excessive sweating from my scalp to my shoulders, as well as horrendous muscle spasms in both lower extremities in just about every muscle of both legs! I took Soma last night and it seemed to calm the spasms down, but the sweating of course persists. Is there anyone who has experienced simlilar symptoms? I questioned my doctor about this and received a rather benign response. I am also experiencing a feeling of something crawling up my left ankle in the Achilles area every time I attempt to walk any distance. If anyone can help, I would greatly apreciate it.
  • I just completed my trial and I experienced 50% relief with my pain. I did have a lot of incision site tenderness but ice is really helpful for those first few days. Right now I'm on 180 mgs of MS Contin until I have the pump permanently placed, and from what my doctor said, I'll still need to take my percocets. I'm reading all I can about this because I don't like "surprises" and I hope this is the answer to getting back most of my normal life.
  • i would think twice before getting a pump....but im agaist them.and the scs.but like i said before some people really like them.i have been following one person progrress on here and so far he is doing very well.
  • I was just skimming through here and had forgotten about my earlier post. I got my pump put in this past Tuesday am. I am taking part in a research study. The study is going to see if gabapentin (neurontin) will work when introduced into the spinal fluid. I have not seen anyone else of the board that is not using a pump without pain (dilaudid, morphine, etc) meds. I get the staples out on July 1st. The first segment of the study lasts 22 days. They are doing a test group, so there is a possibility I will be given a placebo for the first segment. I am cautiously optimistic at this time.

    Is there anyone who has had their pump and/or battery replaced after the 5+ year period? What is that follow up surgery like? Hopefully not a bad as the initial surgery. I don't know that I would be willing to go through this abdominal surgery again and again.

    Thanks for the comments on my profile pic. That's not me, but that's how I feel when the "pain train" is in town!

    If anyone wants to contact me directly about any of this, feel free.

    Good luck to all!
    Kenny

    crabbyappleton61@gmail.com
  • Hello,

    First, I am not some freak that likes looking at operation scars.

    I have fibromyalgia.

    I have been on disability for a few years with my illness finally making me homebound/bedbound. I am on morphine short-acting and long acting with fentanly patches, ambien to sleep and clonezepam to stop musle spasms and twitches.

    My Pain doctors suggested a pump implant, but the consulting surgeon didn't have any pictures of the operation scars, commented I was skinny, and I haven't been able to find any picutres on line.

    I keep getting promised if this works, I could get my life back, but part of my like was making some money doing acting and tv work. Nothing big-- but looks and fitting into a clothes matter.

    More important, the disease is an auto-immune disease that makes the body attack itself. I've had surgery to remove benign breast tumors, only to get scar tissue so big, my doctor thought they were tumors she removed.

    can anyone please tell me of ANY web-sites that have pictures of what the scars look like. the rep from the Implant Company promised to email me pictures TWICE and hasn't. I'm going to get a second opinion once I get approved for the operation.

    I'll have the operation even if I look like a shark bit into me cause I can't live with this pain anymore. I cry every night until the pills hit only to cry 3 hours later until I can take my next dose. My spouce is great. But fibroyalgia hurts so bad, he can't even hold me. I'm screaming in pain in an ambulance to get to the ER for a morphine shot and he can't even hold my hand cause if feel like he's breaking it.

    Last year we spent hundred of dollars on Air-condition bills we didn't have the money for because the fans felt like they were scraping my skin off. (the clonzepam helps that; and VISA!)

    If You know any web-site that have post-op pictures, please let me know.

    If you can send me any information or would be brave enough to send me pictures of your operations, I'd be forever in you debt.

    Just send me a private message and I'll send you me email-- I only have one and it has my real name.

    I understand this is personal request. But you sound like you have gone through my fear and lack of inofrmation. I promise, if I have the operation--and I'm 99% sure I'm having it) to post my Pictures everywhere on the internet so no one have to ask anyone again.

    I have a skinny body everywhere by up top-- i'm 5'2 and 95 lbs.

    I have no fat on my stomach or back-- NONE. I've can't do physicaly activity, live off twinkies, and look like I do 800 crunches a day.

    If they could hide the implant in my chest no one would notice. Until I started reading other people's accounts, I didn't even know it could be placed in your stomach Because my surgeon said it's always placed in your back.

    thank you for you help and understanding in this matter.

    thank you again,
    LadyDee

    PS:
    If I'm so sick and life's so awful, why am I this vain: Three things I'm worried about:

    1. before I was homebound, I made money off of acting and doing minor modeling. I'm worried that "if I get better enough to have my old life back" I won't be able to have my old life back. I still get calls from my agents every once in a while, but I'm too sick and tired to work.

    2. I've had bad scar tissue problems with pervious surgeries (as menioned above) and since I'm very thin (putting on weight by choice in not a option-- I've tried)-- I can feel the lumps of scar tissues pressing against my skin from those surgeries.

    Since I have a auto-immune disease (fibromyalgia) that causes pain, I'm afraid too much scar tissue or scars from the pump implant will cause nerve pain the pump won't cure. Then I'll be worse than I am now. I can't even imagine being WORSE. I don't think I could survive more pain.

    3. I can post-op pictures of every other surgery on the web. Before and after breast jobs. What pace make implants look like?

    I'm skeptical of any surgery or any thing I can't get info on and of any DOCTORS that refuse to give info. I'm a great researcher-- where are these pictures? They are all cartoon pictures of the placement of the implant? WHY is this such a secret? That scars me!!!
  • Thank you to who wrote:
    "I just had my 2nd Medtronics Pump implanted in May 2008....the first pump lasted 5 years and got me off all oral pain meds"

    You give me hope about becoming a MOM and being able to physcially be one.

    My surgery got put off and I talked to reps at Medtronics since my first consult didn't answer any questions:

    I have fibromyalgia and want to stop all my pain. I've tried 60 different drugs: anti-depressants (made me suicidal), lupus, Parkinson, epilepsy medications-- I get the really nasty 5% of dangerous symptoms that only 3% of people gets. I'm just really sensitive or really lucky to make the top 3% in something!!!
    That's why my pain doc suggests the pump.


    But the Medtronics Rep said:
    1. even If it make me feel that I'm healthy, I shouldn't do any activity that evolves "more than basic movement or stretching as over-stretching and extreme activity can rip the Pump wire out or dislodge the cathader"


    To Everyone who has the pump:
    Has anyone had a baby while having a Pain Pump in her or know someone who has? (REP said they have no studies, but my Original consult said I could)

    Rep said some girl did yoga and ripped her wires out. And you ride a bike, but riding a mountain bike is too jarring and will rip your wires out.

    Has anyone participated in jarring activity:
    white-water rafting, horse riding, shooting competitions: pistol, rifle, and shotgun, riding amusement park rides, parachuting, pilates, boxing, kick-boxing and martial arts, and anything else that without tearing wires, dislodging catherdar, or hurting yourselves!!!


    thank you so much for all or any advice you can give me.

    ladydee

    PS:
    I'm tiny. 5.2 and about 98-105lbs. The Original doctor said I didn't have much fat but he could put it in my back? Does anyone know of the pump implant surgery only involving a scar in the back and the pump sitting in your love handle or do you all have pump in you stomach?

    PPS: Does it hurt to move or sleep/rest/lie on; especially, if you're underweight/skinny to medium built.
    1. Does it hurt just walking around?
    can you feel it moving when you are active?
    over-active?
    2. can you feel the medicine coming out? (like a tingle or even a mental/mood change)?
    3. does it hurt or pinch if you lye-back on it, like in a recliner or movie theatre seat?
    4. How about in Bed? this guy wrote that it hurt so much in bed, he could only sleep on his back for 10 minutes.



    on fast (30mg up 8/day)and slow Morphine(60mn 2x), clonazpam 1mg 3/day, (muscle relaxor--flexeral cause permenant hearing problems, soma make me sick.

    percocet 10mg 8/day,
    fentanly patches -2 75 patches,
    ambien 20mg/night
  • I am curious as to the information that the rep gave you. it sounds a bit "odd".
    Rep said some girl did yoga and ripped her wires out. And you ride a bike, but riding a mountain bike is too jarring and will rip your wires out.
    With a pain pump, there aren't any wires, there's the pump and the catheter with the lines attached from the catheter to the pump.

    An SCS has wires that are anchored and can be torn loose with certain activities. Is it possible that the rep was confusing the two?

    "C"
  • I have had my pain pump for well over a year now & it has been a roller coaster ride! Although it has greatly decreased the amount of severe pain I was in, I keep becoming so ill from side effects of the medication used in the pump!I have graduated from the morphine,to Dilaudid & now am on Fentanyl mixed w/ Baclofen for spasms.I was last switched meds in June & am still ill w/ constant headaches,breathing problems,bad sweats,diahrea,weight loss,& on & on.I feel like my body is slowly being poisoned!It is so hard emotionally to deal with .I ask myself..which was worse? I have such a metallic taste it is hard to eat anymore,so I force myself because I HAVE to,not because I enjoy it.I realize the oral meds can destroy my whole system,these are going straight to my spinal fluid & directly to the brain.But what quality of life is this?
    Frustrated beyond!!
    Laurie
  • I'm still waiting with a lot of anticipation for my Medtronic pump. I am starting to think based on everything I've read and personal experiences that the single injection trial might not be as realistic as the trial that lasts a few days. It is more convenient to have the injection and not have to go without showers like the other one. It would be nice to wear a portable unit for a few days and get to enjoy some pain relief.

    I don't know...I guess I'm just brainstorming or something. I could use the portable unit right now because I feel like crap. Heck, I'd go for another just the injection.

    Laurie, I'm sorry you're having a bad time with your pain pump side effects. Did you feel any of this during your trial? I waiting for my Dilaudid pump surgery since I'm allergic to morphine. I did fine with my trial and hope there are no problems once I have the pump put in. Does anyone know around how long typically do you get to wean off your ER meds? Thanks
  • I came across your post while trying to find posts about pain pumps. I am currently considering trying a trial for one. I was scheduled to consult with a shrink for the trial and ended up cancelling because I chickened out. I had read some scary stuff about pain pumps and I don't think I was quite ready yet for one mentally. I was going to go through with it for my husband, not because I wanted it. After reading your posts I feel a little more positive about maybe attempting the trial. I have concerns of course of walking around with a hockey puck stuck in my stomach (that is what it felt like as I held one)and I am very nervous about having needles stuck in my stomach to refill it. I have left sided hip buttock, leg pain and weakness. I had disc surgery on 2 lumbar disc (1 bulge, 1 ruptured) in 2008 and it did not help and the pain has gotten worse as time has gone on. I tried a Spinal Cord Stimulator trial with failure. I now am at a point of either increasing my meds or trying the pump. I don't want to increase the meds and am scared of the pump. I am curious if you are still having good success with the pump? Do you have any words of advise or knowledge to share with someone in my position? I don't really have alot of faith in my PMgmt group as far as I believe they want my $$$$$ more than they care about my pain. A year ago I was told I was not a Pain Pump canidate when they where wanting to try the SCS and when I ask this year why I was now able to have a Pain Pump, "I never told you that". (No I just make this stuff up myself LOL) That's another story for another day, I just need to educate myself about this pump so that I can decide what I am going to do. Thank you or any one else that can give any info pro or con. I just need info to sort out and think about.
  • Can doctors "mix" morphine and baclofen in the pump to control both the pain and the spasms?

    YES, I have a friend who has both mixed.
    Medtronics will give you a special id card for airports, security. I also ordered a nice medic alert braclet for myself with my condition and pump on it, plus meds in it.

    My pump was just a week ago installed with Bacelfon. I have Generalized Dystonia. I am still very very tired and have to take it easy with the catheter getting adjusted in place so take it easy!!! 6 to 8 weeks, as doctor prescribes.

    Happy so far, Deanna
  • I just happened to catch your post about your pain pump and I see that you are a new member. So Welcome to SH!!

    I have had my pain pump about 7 months now and am doing great. I hope and pray you have the same success with your pump as I have had with mine.

    I have Diladuid in my pump for the brutal pain I had in my feet and legs. I just LOVE the pain relief my pump has given me. I can say enough about mine. But anything that gives you pain relief is a wonderful thing.

    Hope to see you a lot on these forums.

    Cheers :H
    Patsy W
  • Pat,

    Thanks for the welcome! I had my pump installed on February 8th. I had a few nights of non-stop headaches and had my first adjustment Monday. Now, I sleep only 2 hours at a time and no naps during the day, too many furry friends in the bed napping while I lay there.

    Did you have any problems as this with sleep? I slept fine before the surgery with my meds. I have Generalized Dystonia. Its like I never had it with the pump! But 7 more weeks of recovery may drive me batty! At least hopefully I can drive next weeks. I tend to over due it. Please advise me on the coming weeks and what I should or should not be up to.

    Praying it continues to work, Deanna :)
  • Hi:
    First, have the headaches stopped? If not, you may have a spinal leak. Do these headaches only occur when you are on your feet? It may seal itself. If you are still having them try those over the counter caffiene pills. That may help. If it does not tell your PM about them and they can do a blood patch to seal it.

    I am thrilled that your pump is helping you. Aren't these devices amazing? I LOVE the pain relief my pump has given me. It has given me my life back!!

    Are you wearing a binder? Some Doctor use them and some do not. They are used to hold the pump in place until you scar in. You wear it untill all restrictions have been lifed, 6 to 8 weeks.

    It takes about 3 to 4 months for everything to scar in good. I would be very carefull untill that time is up. I would talk to my Doctor before I did anything really strenuous.

    I am sorry, but I know nothing about your illness but I will look it up.

    The only thing I can really tell you is to follow your Doctors orders to the letter. You do not want to risk your pump flipping over or the catheter popping out.

    Once everything has scared in good you do not have to worry. It would take a car wreck or a serious fall for this to happen.

    I know you are eager to get back to doing everything you use to do and I can't blame you one bit. I am so very happy to get my life back again that I would do back flips if I could.

    Sending a big hug coz I am so happy for you.
    Patsy W
  • Headaches stopped when pump increased Monday. Problem is I am only able to sleep 2 hours at a time. So, at 2, 4, 6, etc etc and no naps during the day. Nurse said my 'brain is not resting' which is part of Dystonia. Its alot like Parkinson's, Neurological. So, they upped one med which I know does nothing so will see them Monday. I am drinking no caffenine. Frustrating. Like having a new born every two hours to wake me but, nothing there. I do go back to sleep after using the bathroom, one of these walks wall to wall and hope don't all down.

    Thanks for asking!

    When you look up Dystonia make sure its Generalized. The more I learn about it, the more I realize mine may be genetic but, insurance does not cover it, of course not.

    Thanks for asking!

    I am used to being on the ADS American Dystonia Society board so this is new for me to get around. Thanks for the friendship!

    Deanna
  • Hi:
    First, have the headaches stopped? If not, you may have a spinal leak. Do these headaches only occur when you are on your feet? It may seal itself. If you are still having them try those over the counter caffiene pills. That may help. If it does not tell your PM about them and they can do a blood patch to seal it.

    I am thrilled that your pump is helping you. Aren't these devices amazing? I LOVE the pain relief my pump has given me. It has given me my life back!!

    Are you wearing a binder? Some Doctor use them and some do not. They are used to hold the pump in place until you scar in. You wear it untill all restrictions have been lifed, 6 to 8 weeks.

    It takes about 3 to 4 months for everything to scar in good. I would be very carefull untill that time is up. I would talk to my Doctor before I did anything really strenuous.

    I am sorry, but I know nothing about your illness but I will look it up.

    The only thing I can really tell you is to follow your Doctors orders to the letter. You do not want to risk your pump flipping over or the catheter popping out.

    Once everything has scared in good you do not have to worry. It would take a car wreck or a serious fall for this to happen.

    I know you are eager to get back to doing everything you use to do and I can't blame you one bit. I am so very happy to get my life back again that I would do back flips if I could.

    Sending a big hug coz I am so happy for you.
    Patsy W
  • Hi:
    First, have the headaches stopped? If not, you may have a spinal leak. Do these headaches only occur when you are on your feet? It may seal itself. If you are still having them try those over the counter caffiene pills. That may help. If it does not tell your PM about them and they can do a blood patch to seal it.

    I am thrilled that your pump is helping you. Aren't these devices amazing? I LOVE the pain relief my pump has given me. It has given me my life back!!

    Are you wearing a binder? Some Doctor use them and some do not. They are used to hold the pump in place until you scar in. You wear it untill all restrictions have been lifed, 6 to 8 weeks.

    It takes about 3 to 4 months for everything to scar in good. I would be very carefull untill that time is up. I would talk to my Doctor before I did anything really strenuous.

    I am sorry, but I know nothing about your illness but I will look it up.

    The only thing I can really tell you is to follow your Doctors orders to the letter. You do not want to risk your pump flipping over or the catheter popping out.

    Once everything has scared in good you do not have to worry. It would take a car wreck or a serious fall for this to happen.

    I know you are eager to get back to doing everything you use to do and I can't blame you one bit. I am so very happy to get my life back again that I would do back flips if I could.

    Sending a big hug coz I am so happy for you.
    Patsy W
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