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    Old 03-07-2004, 01:06 PM   #1
    Mobity
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    Need advise about Morphine Pumps

    I am brand new to this board and so very happy to have found it. I am married to a great guy who suffers chronic back pain. He has collapsed disks in his thoracic spine which shoots the pain all the way around his chest. He also has disk problems in his lumbar spine which shoots pain down both legs. The rest of his spine is a mess as the bones and disks are all in horrible shape. Doctors don't know how he manages to get around after looking at his Xrays. With that aside, the pain doctor is telling us that he wants him to have a morphine pump implanted. Of course we can't use his word or a video comercial we watched for our decision. I am coming to this board instead.

    I desperately need to hear from people who have had pumps implanted. We have many questions.
    The biggest question is about withdrawal from the Oxycontin he now takes. How did your doctor handle that? Have you had any insurance problems?
    Can a pump cover more than one level of the spine? Would a pump help with severe leg pain?
    How long did it take to get to the dosage that is right for your pain control. How do you know when it is time to refill? Have you ever run out of medicine unexpectedly? Can you get refills in an emergency room if that happens? What kind of questions do we need to ask the doctor before agreeing to this procedure. What is your experience?
    Please let me know your story. I don't care how long it is or if it is a good or bad experience. This is such a big step for my guy to take. He has had two unsuccessful surgeries and isn't eager to have another no matter how minor.

     
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    Old 03-07-2004, 04:48 PM   #2
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    Re: Need advise about Morphine Pumps

    HI, Mobity. I had the pump put in last July. I have DDD, spinal stenosis, trapped L4-5 nerve root, and osteophytes. I will answer you as best I can.
    Yes, the pump took care of the severe nerve pain in my legs. I rated them a continuous 8-9 with pain meds.
    First, your doctor will do a trial, one of 3 different ways. At least, I only know of three. One is to go to the hosp. as an outpt. and have an injection of morphine into the spine. If that works to relieve the pain, the trial is called successful.
    A second way is to go inpatient, have a small incision made in your back and a catheter placed which leads to a pump that he will wear in a fanny pack. That trial last 2-4 weeks while they adjust the amt. of morphine to reach a level that brings relief.
    Another method is to go into the hospital, have a sm. incision in the back where the catheter is placed that leads to an IV drip system. That will go on for 2-4 days while the morphine is adjusted.
    At first, I got miraculous relief. My pain was gone entirely. It has returned now, but at a much lower level. I think it is because my body is more used to the morphine. I would rate my daily pain at no higher than a 4 average. One big problem I have is that I cannot get any break through meds for the times when I have a flare. I would make that a strong consideration and talk to the doctor about it. I have had some days when I needed soemthing to help with the pain and had nothing.
    I have had no serious side effects; some fluid retention, and I sweat more easily.
    The pump has to be changed every 4-5 years, but the catheter can last longer. There are several kinds of pumps. I have the kind that can be programmed. That is, I can get one dose of morphine during certain hours, and a different dose during other hours. I understand a new pump is coming out that will allow the patient to give himself small boosts of morphine if needed.
    As for withdrawals, that should not be a problem. The doctor will figure out how much morphine he needs to replace the oxycontin doseage. He will have to have the pump refilled every 8-12 weeks depending on the amount he is given. I have Medicare and had no insurance problems nor has anyone I have spoken to. YOu will always be given a target date by which you must have the pump refilled. The pump has an alarm that beeps should you get very low. (You won't unless you miss an appt.) I don't know about getting it refilled at an ER...that should never be a necessity.
    Would I do it again....YES. But I would make sure that the dr. is willing to either give me break through meds or else put in the new pump that you can give yourself a little boost of morphine if needed. It is a positive experience, easy recovery from the surgery. The hardest part is finding the right dose...I am almost 8 months with the pump and still adjusting the dosage. It might take up to a year.
    I hope this has helped you. Good luck.
    Carol

     
    Old 03-08-2004, 10:53 AM   #3
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    Re: Need advise about Morphine Pumps

    Hi there!

    I, too had the pump implanted last year and within a month had it removed due to complications. I am an exception to the rule.

    If you type in "pump" or "morphine pump" in the search line you should be able to see a whole lot of information from last year regarding the pump. I think it was around June, July, August. Mine was not a success but another poster Tiddgys had hers put in after I did, and the last time she posted, she said it was doing well. Believe me, do the search and you'll find any and all the info you need concerning the pump: the good, the bad and the ugly. That way you will be privy to the pros/cons, the advantages/disadvantages from very personal experiences and then you will be able to make an informed decision. One of my posts gave a detailed, indepth play-by-play of the surgery itself. But I must emphasize to you that mine was not the normal experience. There are many success stories also that you will come across using the search field. Oh, one thing I can mention now is that my dr. had me taking the oxycontin while I was on the pump. The pump was initially at a very low dose and as he went up on the morphine he decreased the oxy so I had no problems with withdrawal. Every dr. has their own way of doing it, though.

    If you still have questions or concerns, I would be most happy to answer them and I'm sure some of the success stories will also be happy to shed some light on this topic. It's a big decision so the more educated you become, the better. Best wishes, Linda (lindao1)

     
    Old 03-08-2004, 04:24 PM   #4
    Mobity
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    Re: Need advise about Morphine Pumps

    Thank you Carol and Linda for answering me.
    Carol, I don't understand something If you need more medicine why haven't they adjusted the medication sooner? And why can't you get something for breakthrough pain? Our pain clinic is only open two days a week and we worry that we won't be able to see the doctor when we need to anyway. We can never talk to him and have to go through a P.A. One of the P.A.'s is great but the other one thinks she knows it all and won't listen to what my husband tries to tell her. The doctor seems pretty in-tune with what my husband needs though.
    Linda, thanks for the advise and I am sorry about your experience with the pump. what are you doing now? I will look for the information you told me about.

    Is there anyone else out there that can tell me about their experiences? I'm all ears.
    Thanks.
    Mo

     
    Old 03-08-2004, 06:19 PM   #5
    Mobity
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    Re: Need advise about Morphine Pumps

    It is me again. I just spent the last hour searching the archives for "pump" and have worn my little fingers to the bone coppying and pasting everything in to a word doc so I can let my husband read all of the great posts. Thanks so much for the advice; I still thirst for more stories so if anyone has input it would be appreciated. I am amazed at the strength and support I read on this board. How someone with chronic pain can live through all of it is beyond me but I admire all of you more than you can ever know. It has been good for me to read about others, it makes the experience less lonely. We had a bad experience yesterday at the pharmacy. We live very close to the state line and our doctor is on the other side. The pharmacist wouldn't fill my husband's prescription because there was from out of state and there was "no way for them to verify it's validity." I asked why they didn't call the doctor (It was Sunday) and the snit just said she didn't do that. I asked if that was the pharmacy's policy and she said it was "her" policy. I told her that if she would check in her little computer she would see that we have had a prescription (out of state) written by the same doctor every month for the past year. She wouldn't bend. I went balistic and demanded to see the manager. When I talked to him, I was barely contained and told him that I didn't appreciate being treated like a criminal because I happened to pick Sunday to fill my husband's prescription at a pharmacy that advertises 24-hour a day 7-days a week service. I also asked him to check the records and see how much business he was going to lose if I chose to go elsewhere. (I'm saying "I" a lot.) Anyway the bottom line to him was that I let him know in no uncertain terms what kind of pain this pharmacist was forcing on my husband. The manager said that he himself was a pharmacist and he would make sure the prescription was filled. Just a few minutes later my name was called over the intercom and I passed a furious pharmacist (the snit) storming out of the pharmacy area with her coat in hand. The prescription had been filled and was ready for me to pick up. I'm not normally a nasty person, but I sincerely hope that the snit quit her job yesterday. People suffering the way you and my husband do don't deserve to be treated like that. growl
    Hey, now I'm sounding off and it feels good.! We get so tired of things like that. Since hubby is on Oxy and Bextra he tends to have red eyes and people look at him funny. He's been accused of being drunk, stoned all of it.
    Well enough complaining. Please write!
    Hugs
    Mo

     
    Old 03-10-2004, 08:33 AM   #6
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    Re: Need advise about Morphine Pumps

    Hi Mo, I was just reading your thread and thought I would ad my 2 cents. It does seem kind of strange to go straight from the first line drug to treat chronic pain to an intrathecal pump.

    Although the pump can be effective so can oral meds. OxyC is usually the first drug they try, If he's not getting adaquate relief or has to many negative side effects then it would make sense to try another med before giving up on all oral medication. Has he tried any of the 3 distinctly different version of LA morphine, MSContin and the generic equivelents, Kadian a 12-24 hour higher tech version of long acting morphine, Kadian can be dosed once a day but most people get smoother relief with twice a day dosing. The newest one called Avinza, is a true 24 hour med which seems to work well with once a day dosing once the dose is corectly titrated.

    There is also the duragesic patch which contains fentanyl and offers 48-72 hours of relief and then methadone is usually the last line they try before looking at doing a pump trial. A doc trying to get insurance authorization for a pump after only trying one med is going to have to do some creative explaining as to why the pump is his last and only option if he has only been on OxyC.

    The reasons for using the pump are inefective pain relief, Intolerable side effects that prevent the patient from reaching a tolerable level of pain and many insurance companies want other avenues exhausted before authorizing a 30k surgery with a pump that needs to be replaced every 5-6 years depending on the flow rate.

    You also have to be comfortable with the doc doing the implant, It's a lifetime commitment to the doc that implants the pump. If a doc sees the pump as one of the tools to help manage pain, That is a realistic expectation, But when the doc sees the pump as a cure all, then you run into trouble, finding a correct dose, Finding a doc willing to use BT meds after the pump is implanted and there has been a recent problem with granular cysts forming at the end of the cathater blocking the flow of morphine when the docs try to save money by using a compounding Pharmacy rather than a pre mixed solution like Astromorph that is designed to be used in the pump. There is something about the way they compound intrathecal meds at compounding pharmacies that is causing these cycts to block the flow of meds into the intrathecal space.

    I would ask the doc where he gets the meds for refills, whether from a manufacturer that has to live up to a higher standard with the FDA overlocking and quality control being well in place. Compounding pharmacies have neither. They mix up meds to the docs specifications but for some reason the compounded meds placed in the pumps are more proned to blocking the catheter.

    If he hasn't tried any other oral pain medication it really doesn't make sense to jump right to the pump. First of all it's going to be very difficult to find another doc to take over the pump someone else implanted. Which you may find yourself doing trying to find a doc that doesn't see the pump as a cure all.

    If your hubby uses the ER for flair ups he's unable to control, once the pump is implanted he won't find much relief in the ER because those docs don't have the specs on the pump flow rate and are afraid of overdosing the patient. Many docs do see the pump as a magic cure all and won't prescribe oral meds once the pump is implanted.

    Every person I know that is satisfied with their pump still uses oral meds either log acting to supplement the pump or short acting for breakthrough. I would ask the doc if his pump patients still need oral meds, If his answer is a flat no, he will be in the same position as carol, with no means to manage breakthrough meds. If the doc doesn't use BT meds with oral LA meds there is a good chance he won't use BT meds with a pump.

    Pump titration is slower than oral meds because you pretty much have to go through a cycle to replace the meds with a more potent mix if they are unable to get a positive reponse with the concentration they have in the pump. Most folks say it takes 6 months to a year to fine tune the pump settings to manage the majority of their pain.

    There are advantages and disadvantages with the pump. Having a tuna can shaped object in your abdomin that can be seen when he takes his shirt off is unpleaseant for some people. Catheters can become dislodged or blocked, you can develop pocket infections, the batteries die and the pump has to be replaced every 5-7 years and often there is a new design out by then, a smaller pump which means they have to make adjustments to the pocket they created for the original pump.

    NO other doc other than your PM doc is going to refill his pump, so you need to be sure this doc is accesable and dependable and won't let the pump run out before refill time.

    It just seems a little strange to go directly from Oxy to the pump unless you haven't mentioned all the other meds he has tried. Anyway, those are just more things to consider and ask your doc about.

    At this time there is not a multi catheter pump, where you can place one cath at the thoracic level and one cath at the Lumbar level. I'm hoping they come out with one because many people need more than one area bathed in pain meds.

    I'm fused from L1-S1 and would love to see a pump that could deliver meds to the base of the fusion and the top of the fusion, about 8 inches apart. Intrathecal meds are heavier than spinal fluid and tend to flow downwards. If the catheter is placed at the lumbar level it may do nothing for the Thoracic level.If It's placed at the thoracic level then it just depends on how far the meds have to migrate to help the lumbar pain. I'm sure it's just a matter of time before a multi cath pump s designed and on the market.

    Fortuantely you do get to do a trial to see if the pump would relieve at least 50% of the pain to call it a succesful trial. I've been on every long acting med and have done the inpatient 5 day trial but had a spinal fluid leak from the catheter the whole time which blurred any benefit from the pump. I'm going to have a single bolus injection into the epidural space next month to see if I get good results without having to create another hole in my spinal cord.

    It really is a huge decision and a major commitment on both the patients part to trust the doc and on the docs part to maintain a pump for your hubbys entire life. For example, If the doc refuses to increase oral meds because he'[s not comfortable with the dose required, he will have the same attitude about the pump and may never adjust it to a level that makes it worthwhile. I've seen too manypatients have to fight and fight to have the blasted thing adjusted to a level that provides adaquate pain relief. If the doc is unwilling with oral meds he will be just as hard to work with on a pump.

    AT my PM practice they do offer just about every modality imaginable to treat pain. They do pumps when the patient is suited to such a drastic measure. The have you do a psych test and eval with their psychologist, Have a partner meeting to determine if they want to make that lifetime commitment to the patient. It's not a simple process and It certainly is never rushed or ever pushed on a patient rather than working through the different oral meds.

    That's my understanding and experience with the pump and the trials. I do trust my PM doc to work with me but they recently decided to give no more than 60 unit doses of BT meds a month. Because my base dose is higher than most have to take 2 30mg MSIR tablets to obtain relief so they do make an exception for me because there isn't a BT med available that I can afford that would manage my BT pain with just one pill.

    I've been with my present group of docs for 3 years and have seen several policy changes like this 60 dose BT thing. No replacement meds if you except partial fills and a new contract each year. So what is said will be policy today may change drasticlly in 3 years. Say your present doc believes BT meds are a neccesity . In 3 years they bring in a new doc that thinks BT meds are the road to addiction and they Discontinue all patient BT meds. These things are very possible. If you don't like the changes you can change docs but it will be so much harder to find a doc to take over and make that same lifetime comitment to a patient he hardly knows anything about.

    Lots and lots to think about and likely there are other oral meds he can try that may do abetter job and produce less negative side effects.
    Good luck, Shore

    Last edited by Shoreline; 03-10-2004 at 08:55 AM.

     
    Old 03-10-2004, 11:05 AM   #7
    pixiepoodle
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    Re: Need advise about Morphine Pumps

    Hi, since I have had a pump for 2 years, I would like to mention re: pump titration that you don't have to wait to go thru a cycle of meds before the dosage can be turned up. Since it is turned up by a computer, a new print out indicates the new refill date, which will be a little sooner. When you get to the point where you are having refills every mo., the dr. will usually up the concentration of the med so you don't have to come in for a refill so often.

    Since strong meds are being pumped into your spinal fluid, it does take at least a year to build up to a dosage that really works well, along with the break thru meds.

     
    Old 03-10-2004, 06:46 PM   #8
    dooey35
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    Cool Re: Need advise about Morphine Pumps

    [Hello, my husband got the morphine pump implanted in Feb of last year. To this day, it has not given him any pain relief. He takes 10 80mg oxy per day plus roxicodone for breakthrough. Up until January of this year, he took 18-20 80 mgs oxys per day with the implant in. The dr. never reduced his oxys when she put the pump in. He did have a trial of the pump before it went in and he thought it did help somewhat. I think he was more hopeful that it would work for him. Anyway, the dr. is reducing the meds in the pump so that it can come out. It takes a while to reduce it before it can come out. In the meantime, ins. will only pay for the 10 mgs. of oxy which are not helping him very much at all especially when it rains or snows! I would appreciate it if anyone else has info on the pump not being really effective. I saw one reply on a website that sounded like my husband. Anyway, good luck with your decision and I hope everything turns out good for you and your husband.

     
    Old 03-11-2004, 09:14 AM   #9
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    Re: Need advise about Morphine Pumps

    Sorry Pixie, You are absulutely right, They can adjust the daily flow rate without having to change concentrations.However the adjustments are usaully very small because intrathecal meds are about 300x stronger than oral meds. Meaning if you took 300mgs of morphine per day , 1mg of IT morphine a day should suffice. They increased my flow rate at .3 mgs at a time, Very slow.

    But if a weak concentration is started you may never find a flow rate at that concentration. Changing meds and finding the right meds are other factors in finding a comfortable level. Meds like baclofin "a muscle relaxer" can be added, They can add small amounts of Bupivacaine to add a little numbing action directly to the cath site so the process does take time to find the right mix and concentrations.

    It sounds like dooey never should have had the pump implanted, that's why they want to see a 50% reduction in pain to call the pump trial a success. Helping a little doeesn't qualify as a succesful trial, but I understand wanting it so badly to help you might go ahead even when the help was minimal. They discontinued all my oral meds except for PRN BT meds when I did my inpatient trial. It took several days just to reach a point where I didn't need BT meds every 3 hours..

    Cases like Dooy is why my group of docs is very selective as to who they will implant a pump in. Thanks for the correction Pixxie. Do you mind if I ask what you have in your pump. There is actually a pretty wide range of drugs that can be delivered IT as long as they are preservative free. Morphine, Dilaudid, Fentanyl, Sufentanyl,Afentanyl, Baclofin and bupivacain and marcaine are a few of the drugs that can be delievered IT.
    Take care, Shore

     
    Old 03-11-2004, 10:26 AM   #10
    pixiepoodle
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    Re: Need advise about Morphine Pumps

    I have fentanyl since it turned out when morphine was first put in I was alergic to it. In 2 years, I have gone from 14 ug/day to 100 ug/day. My dr. turned mine up by a few ugs at first and it never helped so he jumped to 10 ugs. One time, he adjusted it by 30 ugs. I am hoping he will adjust it at least 10 again when I go on the 23rd.

    I have Fibromyalgia which causes pain in different places from day to day and at different levels. I find myself in a catch 22 because when he ups it, I feel so fantastic that I start doing more and more physical things that I would never have done before I got the pump because of my pain level and sometimes throw myself into a flareup (kinda like going from menstrual cramps to labor pains).

    I find it very hard to remember not to overdo it when I feel so good. Because my muscles have atrophied over the past 8 yrs. I want to use them as much as possible to build them back up. The pump is a Godsend for my illness and people who hadn't seen me in awhile after I got my pump, to this day, keep telling me they can't get over how much better I look because my facial muscles are not all drawn from trying to deal with pain.

    I wish everyone could have the great results from the pump that I have had, but everyones situation is a little different.

     
    Old 03-14-2004, 03:26 PM   #11
    Mobity
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    Re: Need advise about Morphine Pumps

    Thanks so much my friends,
    We went to the pain doc Friday and put forth a lot of the questions we needed to address. We will not be getting the pump until we have tried all other meds. Meds were increased. Hubby is now on Oxycontin 60mg four times a day, Bextra 20mg twice a day and Neurontin 600mg four times a day. He actually got a good night's sleep last night. So far it has made an impact on how he feels but the pain is still there, just not as fierce. Unfortunately his legs gave out on him in the middle of Walgreens today so I don't think he'll be doing much shopping without me. It looks like he will be needing another laminectomy or two. Shoreline I have printed out the info you gave me and we will be using it as needed. I can't thank you enough for it.

    Hugs,
    Mo

     
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