Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 , First off, I think that anything you or any other flat-backers or former flat-backers are going through should be considered " ON topic " ! And yes, it definitely often does stink! I'm a bit confused though, as I'm not very familiar with pain pumps. Who's " Baxter " ? Whoever, they are, I sure hope they can get to the bottom of what caused the problem. Do you think once you have some concrete answers, it might give you a little bit of peace of mind, so that you might not feel so much need for backup medication? It seems odd, though, that the PA in your pain doctor's office isn't more sensitive to the various feeling patients have about being reliant on a mechanical device for pain control. I wish I had some suggestions for you, . But all I have is sympathy and, as always, a wish that things will get better for you, (I'm having some computer problems, so I hope this message will get to you.) loriann > > This is really wandering off the subject of this forum, so I'll try > to make it succinct. > > I learned at my pump-refill that Medtronic has finished its > diagnostic examination of my previous pump. That pump stopped > working completely last Dec. 26. I was quasi-immobilized and back on > oral pain meds that made me dopey and cranky for a month before I > went back into surgery and had the pump replaced -- to the tune of > about 25K for the pump alone. > > Medtronic has apparently concluded that the problem was not with the > pump. Rather, the pump failed because of corrosion that could only > have been caused by the medication it was filled with. > > The pharmacist can not explain this, having dispensed only Duramorph > or Infumorph in sealed ampules. The medicine I get is supposedly > free of additives and preservatives. It goes through two additional > filtering procedures before it enters the pump and my body. The > pharmacist has sent a letter to Baxter, which will now make its own > investigation. > > I am still trying to get a copy of the original report, sent to my > neurosurgeon (who is currently on vacation). > > I asked the PA for some strong backup meds in case this happens > again. When I initially had Pump #1 implanted last summer, the pain > doctor prescribed my regular oral meds for me and asked me to wean > myself off them slowly as they went up on the morphine. I did so, > but fortunately hung onto the meds -- without them, I would have > been up a creek when the pump stalled suddenly in December. But > during my month of hell, I pretty much used up all the oxycontin I > had left. > > The PA seemed very alarmed at this request and said no, no way -- > that it is not considered appropriate to prescribe backup oxycontin > to patients on the pump. > > Go figure. > > I am supposed to call my pain specialist or the PA if the pump stops > again. Supposedly the Norco tablets the PA did give me a script for > will hold me in the meantime. Hmm . . I don't think so, folks. > > Someday I would love to go back to Europe and visit a few other > places (between pump refills, of course). But if I could not carry > any backup meds along with me in properly marked bottles, simply > because of the Oxycontin hysteria abroad in our land, the specter of > the DEA, whatever, or whatnot -- yikes. > > On the other hand, how likely is it that I will ever be truly mobile > again? > > My last revision surgeon said I could expect to have this kind of > pain for the rest of my life. The best anyone can do for me at this > stage is to keep the pain bearable with narcotics. > > This is finally sinking in with me. I am really grounded. I am > really limited. This is for real. > > Then again, I must consider what I can do as well as what I can not. > As that Indian classical dancer responded to questions about how she > could resume her career following the amputation of her leg, " You > don't need feet to dance. " > > And then there are people like Hawking. > > There is much left for all of us to see and do and be, whatever > disabilities life may have sent our way. > > I will get up again. I will find my way, and so will you. > > This is just the hand we've been dealt. > > Still, sometimes it kind of stinks, don't you think? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 > > There is much left for all of us to see and do and be, whatever > disabilities life may have sent our way. > > I will get up again. I will find my way, and so will you. > > This is just the hand we've been dealt. > > Still, sometimes it kind of stinks, don't you think? > > > > HI , There are things that I am missing out on and yes there is lots I would do if I did not have Flatback, but would I really? I look around me and see all these fully abled people who complaine about laundry and grocery shopping. I did too when I could do them. Now I wish I could do them. If I get to the point of doing those things again I will be thankfull. I would never even think to be thankfull for the little things like the ability to do a chore with out going through this. Having these medical issues myself and a daughter with all the same ones (and then some), our family is thrilled to get a week with out seeing a Dr's office. It is the insignificant things that many take for granted that bring me joy. I remember you posting about how severe your case of Flatback is/was and I don't think that I have experienced even a 10th of your pain level so I can't really identify. For you and the ones who can identify with that type of pain I thank you for all that you have done to procede forward and help pave the way for people like myself to get better care. Jolynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Thanks, Martha. Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Thanks, Martha. Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Hi, Lori -- Thanks for your concern. I realize this response is a little tardy. Baxter is a large drug company that puts out brand-name morphine (Duramorph, Infumorph) as well as a number of other pharmaceuticals. People who have been through a pump stoppage or malfunction and some degree of incipient morphine withdrawal along with a return of the severe, chronic, intractable pain that led them to be referred for one of these pumps in the first place are likely to feel more comfortable with a backup medication for repeat-emergencies. One woman I talked to finally was given such medication after four trips to the emergency room for acute withdrawal from medically prescribed morphine which was not being properly infused by her medically implanted pump. If I understood correctly, the ER docs, who evidently knew nothing about pumps and could not understand her plight, referred her to some kind of Twelve-Step group for senior- citizen drug addicts. And this is not so far-out, judging from substantial anecdotal evidence. It would also be slightly anxiety-provoking to travel far from home with no source of pain medication other than one's pump. My surgeon once told me, " No one wants to handle pumps, " and I am starting to agree with him. Surgeons remain willing to implant them, but programming and refills are generally handled by pain management specialists -- and of these specialists, the ones that handle pumps seem to be few and far between. I am not really sure why, since they often prescribe oral narcotics, transdermal patches, etc. Perhaps the pump is too much of a " pain, " or maybe reimbursement is not very good for pumps, compared to other pain management modalities? I will have to research this some more. I also hope to find more time in my life for the group you found for me -- Pumpsters. They are a great group and seem to have tons of information on every aspect of life with a pump. So I do appreciate your steering me their way. My first pump was corroded by some (I HOPE) EARLIER morphine compound I apparently received in the PAST (?) -- i.e., an inappropriate form of morphine containing a specific dangerous preservative, not for intraspinal use. That medication came from one or more pharmacies. There is seemingly no way of knowing when (or if) I stopped receiving this morphine-plus-preservative at some point, although I assume that someone changed something by last May (about four months after my current pump was installed), when my surgeon received the report from the pump manufacturer explaining that my pump had stopped not through any intrinsic defect but because of what was injected into it through my abdominal wall (and what it then infused through a catheter into my intrathecal space, at least until the preservative stuff caused it to go kaput). On the other hand, if I have been receiving pristine, brand-name-labeled morphine from the beginning, and if the manufacturer now needs to review its own quality control procedures, all bets are off! Nor do I know how long it takes for a neurotoxin and corrosive agent like the one I was apparently receiving to cause a gear in the pump to detach completely from its gear train, as mine did. I can only say that I know the exact day and moment that my first pump came to a grinding halt -- my whole-body response was unmistakable. I was not a happy camper. I was glad to have other medicine at home, even though it brought back the whole horrible experience from which the pump had finally freed me. It left me dopey, prone to abrupt and protracted sleep attacks which my narcolepsy medication could not prevent, unable to get up in the morning until I had built up sufficient medication in my bloodstream. (Try waking up at, say, 7 p.m. with a full bladder, and finally making it to the bathroom to pee around 10 or 11!) So I'm not saying I WANT or LIKE oral meds, just that they were a necessary evil when I did not have a working pump. I am not all that surprised at the PA's response. Pain in the U.S. is vastly undertreated. Doctors and their staffs who are not narcotophobic to begin with are likely to become more and more so as they continue to practice in today's hysterical climate. Wait, folks, don't run for the exits, please! -- This has never been a political group, and I don't want to turn into a stump-orator or manifesto-thumper at this late date. Well, not too chronically, at least. But I've gotta say some of the reports and narratives I've been reading in some of the pain forums are totally hair-raising. If I'm not mistaken, Lori, you do not take any potent narcotic medications yourself for the degree of pain you are having. If so, you are very blessed, and I pray you never do feel the need for any " backup meds " yourself. Personally, I had rarely made the acquaintance of a Tylenol III till about age 48 or 49. But a funny thing happened to me on my way to becoming spinally revised x 6 . . . Take care, Lori, and let's hope I will answer any other posts you may have written me in a more timely manner! I am still overdue to answer who knows how many other posts as well. I guess I've been just a mite distracted and stressed out lately. P.S. Hope your computer is all better now. As ever, > > > > This is really wandering off the subject of this forum, so I'll try > > to make it succinct. > > > > I learned at my pump-refill that Medtronic has finished its > > diagnostic examination of my previous pump. That pump stopped > > working completely last Dec. 26. I was quasi-immobilized and back on > > oral pain meds that made me dopey and cranky for a month before I > > went back into surgery and had the pump replaced -- to the tune of > > about 25K for the pump alone. > > > > Medtronic has apparently concluded that the problem was not with the > > pump. Rather, the pump failed because of corrosion that could only > > have been caused by the medication it was filled with. > > > > The pharmacist can not explain this, having dispensed only Duramorph > > or Infumorph in sealed ampules. The medicine I get is supposedly > > free of additives and preservatives. It goes through two additional > > filtering procedures before it enters the pump and my body. The > > pharmacist has sent a letter to Baxter, which will now make its own > > investigation. > > > > I am still trying to get a copy of the original report, sent to my > > neurosurgeon (who is currently on vacation). > > > > I asked the PA for some strong backup meds in case this happens > > again. When I initially had Pump #1 implanted last summer, the pain > > doctor prescribed my regular oral meds for me and asked me to wean > > myself off them slowly as they went up on the morphine. I did so, > > but fortunately hung onto the meds -- without them, I would have > > been up a creek when the pump stalled suddenly in December. But > > during my month of hell, I pretty much used up all the oxycontin I > > had left. > > > > The PA seemed very alarmed at this request and said no, no way -- > > that it is not considered appropriate to prescribe backup oxycontin > > to patients on the pump. > > > > Go figure. > > > > I am supposed to call my pain specialist or the PA if the pump stops > > again. Supposedly the Norco tablets the PA did give me a script for > > will hold me in the meantime. Hmm . . I don't think so, folks. > > > > Someday I would love to go back to Europe and visit a few other > > places (between pump refills, of course). But if I could not carry > > any backup meds along with me in properly marked bottles, simply > > because of the Oxycontin hysteria abroad in our land, the specter of > > the DEA, whatever, or whatnot -- yikes. > > > > On the other hand, how likely is it that I will ever be truly mobile > > again? > > > > My last revision surgeon said I could expect to have this kind of > > pain for the rest of my life. The best anyone can do for me at this > > stage is to keep the pain bearable with narcotics. > > > > This is finally sinking in with me. I am really grounded. I am > > really limited. This is for real. > > > > Then again, I must consider what I can do as well as what I can not. > > As that Indian classical dancer responded to questions about how she > > could resume her career following the amputation of her leg, " You > > don't need feet to dance. " > > > > And then there are people like Hawking. > > > > There is much left for all of us to see and do and be, whatever > > disabilities life may have sent our way. > > > > I will get up again. I will find my way, and so will you. > > > > This is just the hand we've been dealt. > > > > Still, sometimes it kind of stinks, don't you think? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Dear Beth, You always write wonderful letters -- but this one, wow! I am now reading it again. It gets me where I live and sinks in a little more fully each time. You wrote: > Accepting ones' " limitations " is probably the single most difficult aspect of Flatback Syndrome...and, sadly, possibly one of the least talked about subjects on this forum. We discuss doctors, procedures, families, etc. but rarely " limitations " . Could it be that , as people who suffer from a chronic, debilitating condition that has robbed us of the lives we once envisioned for ouselves, we choose to ignore our true feelings on this subject? Is it just easier for us to pretend we're still " normal " ... that we haven't been cracked, broken, twisted and " screwed " into medically improved " new people " ? I had never thought of that one, Beth, in all the years since I acquired those lovely pedicle screws! This is such a fantastic, appropriately gruesome description, and I do love the wordplay. I don't know why I feel the need to be so upbeat. I am so worried that I might bring someone down if I don't put on my happy face. But what if there are people who SHOULD be " brought down " because otherwise they will remain obtuse and insensitive and our " friends " in name only or in just the most superficial sense? I must thank you for articulating this issue so clearly and in such a to-the-point way. You have given me much food for thought. But let me go on. You also wrote: > Why is it that we attempt to exude all this self-confidence and put on our happy faces when we're in public and around our families or typing on our computers? If not here...if not to our family and/or friends... if not to our surgeons and Pain Mgmt. docs...where are we letting go of our feelings of fear, pain, resentment, incompetence, anger, RAGE at what's become of our lives? EXACTLY. Thank you SO much, Beth. Thank you for coming out and saying it. You said that you >have actually opened up my computer in those awful, painful, sleepless hours of the nights and typed much of what I'm saying here...then I chicken out and hit the magic " Delete " key so as not to burden my Feisty Friends with my weakness...my fears...my feelings of incompetence...my RAGE! Yes RAGE!! You don't ever have to hit the delete button again, Beth. Please don't. If you can't unload here, then where. I have been a huge burden myself -- and to a group of people who mostly have very small weight-lifting limits! And I probably will be a burden if not a total pain many times again. This is the place, Sister! You've gotta know this is no burden at all -- except in terms of the pain we feel for you, the helplessness of wishing we could do more. But if nothing else, you have to have somewhere you can just vent and rage. I hereby grant you carte blanche to send us the full details of your worst fears and darkest emotions. Or email me anytime -- I especially tend to be up and available around 4 a.m. Erie time, in case that's one of your trough-times. I'm pretty sure that's 3 a.m. here in Chicago -- hmm, or is it 2 -- but anyway, I've had so many occasions (since the flatback) to think of that quote from (I think) F. Fitzgerald, " In the dark night of the soul, it is always 3 in the morning. " Let's ask ourselves this: If we did not have these imploding/enraged/half-out-of-our-gourds times now and then, would we be exactly NORMAL? I mean, what is a " normal " reaction to having so much of our lives/dreams/activities/ambitions/desires/plans/etc. totaled by this wholly preventable condition, this stunningly " twisted " version of the lives we thought we were living? I mean, don't you have to be a little bit distraught, distressed, bouncing off the walls, screaming swears (at least in the privacy of your head) once in a while to be having a halfway-normal reaction to all this??? > > Many of you know of my crusades to end the ignorance revolving around Pain Management. I read 's posting (re: her pain pump problems) aloud to my husband, a man who has had to be on the sidelines of my pain, feeling less than helpless to aid his wife...who can tell from the look on my face or the color of my skin whether or not I'm in pain...the man who has held me in his arms and given me his unconditional love and support for 23 yrs...and he wept...he wept for , whom he knows only from the occasional posting I read aloud to him...he wept for me, because of the helplessness he feels trying to protect his wife...he wept for each of you who has had to face the realization that your life may always be filled with the possibility of yet another surgical procedure, another day of pain, a career not finished, a family not taken care of the way you wish you could, a dream not fulfilled... he wept along with me... Beth, it sounds as if you have a truly great hubby. Please give him a big, warm, thankful hug for me. Dear God, you are so eloquent, Beth. Do you have a book in you? I am starting to believe I have one in me and will publish it. Have you thought of this? I don't know if you feel this way, but I know that in my case, my writing -- from emails to poetry to whathaveyou -- helps to sustain me and " contain " my feelings in some comforting or self-therapeutic way. > > In the past 10 months my life has been turned upside-down in ways I never envisioned. My husband and I left our home, our sons, our friends, his job and my doctors and moved back to our hometown...to the home where my husband was raised by his Grandmother...to care for that now 91y/o Grandmother. From the beginning, Beth, I wanted to give you a trophy or something. I almost could not believe that you were doing this. I was also a little worried about how you would fare, given the strains you were already facing because of your spinal pain. > Never before have I felt more incompetent, more frustrated, more helpless and hopeless as I do these days. My physical and emotional health have deteriorated drastically in the past few months...far too many mornings have arrived that I haven't wanted to face...too many nights, I have dragged myself to bed in tears after caring for this verbally critical, ungrateful, old woman. It sounds even worse than I imagined or feared. I am so sorry. Can you get any kind of relief? Some time away? Anything? >I still see my physician in land every 3-4 months so that I can remain under his care and keep up my end of my Pain Managment Contract. But because I am on a med regime that includes OxyContin, I have to e-mail my physician's office each month . . . . So far, there have been 4 months out of 10 that I have encountered a problem; each time my Rx's haven't arrived via mail in time for my monthy refills, I've gone thru narcotic withdrawl hell...puking my guts out, barely able to walk, trying to make repeated calls to the doctor's office THIS IS INEXCUSABLE. (I am especially upset and profoundly disappointed and pissed off on your behalf because this was a doctor you liked and appreciated so much. I had high expectations.) What are he and his staff doing to ensure that this NEVER happens to you again? (I do not understand how they could have let it happen once, let alone twice, let alone . . . Anyway, this whole situation sucks dead bears. It has got to change. I am outraged.) > all the while having a senile. old woman hollering " When are you going to scramble me some eggs? I'm hungry! " or " I'm not wearing those diaper things! What else have you got to do beside > run the sweeper and do laundry anyway? You don't work! " That's about when I implode...when I probably should explode! But it's hard to keep up that facade that " life's great " all the time, especially when I feel like I'm falling apart, literally! Well, I don't care how many articles we may read about the problems of " caregivers " -- and many of us are in some kind of caregiving role, even while needing (and failing to get) all kinds of care ourselves. Reading our own and each other's stories really brings it home. I have been in a situation which, while not identical, is in some ways analogous, and I think I know some of the franticness and desperation you are feeling at times. I hope and pray that you and your husband are somehow able to spell each other, and maybe to get someone to relieve you for regular periods so you can get out, live a little, recover . . . Otherwise, you are in a constant pressure cooker. Can you really sustain this indefinitely? Can you think of any alternatives, or at least some stopgap measures that might buy you more of a break when you need it? Are you all this lady has, or is there someone else you could call upon? > > Sorry to unload all of this rage and dpression on all of you...but God! it feels great to finally express my RAGE to people I know can understand at least part of what I'm going through!! For years now, I've tried to stay positive and look at all that's happened to me (medically and surgically) as character building. And no matter how rotten I feel each morning, I still remember to thank God that I'm still alive, that I can still walk, that my son is healthy and happy, and that my husband still loves me. But the days of putting on that happy face are getting fewer and farther between and that frightens me more than anything else. Please don't worry about it, and please unload any time. If not here, where? I am SO glad you did! And please, please feel free to do so again anytime, as much as you need to. > > I feel so blessed to have all of you in my life...thank you for giving me this opprotunity to vent...again! > Likewise, Beth. You are valued and cherished and esteemed at this group, and all of your posts are deeply welcomed. Thank you so very much for this latest, special one, which has also been posted on my heart. As ever, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 I thought the same thing of Beth's letter, but I am not very eloquent so I didn't respond You write awfully well too, ! I can never say things the way I'd like for them to come out. I don't post too often here, because I'm not even sure that I have flatback - but I want to stay up-to-date on it. I had my spinal fusion in 1989 with Harrington/Luque rods at age 13. It goes from t4-l4 and my curves were corrected from 65-70 degrees each to around 50-55 degrees each. Before I was diagnosed with MS, I had a significant amount of back pain and sometimes had problems standing upright. I have a fairly progressive form of MS, which was diagnosed 4 years ago. In that amount of time, I've gone from hiking mountains, camping, and working a fulltime & parttime job, to not being able to drive, work, houseclean, or even walk out to my own mailbox, not to mention the fatigue and bladder control issues that often come with MS. It is so frustrating to lose one's independence, and to think that getting out shopping to Target once every two months is suddenly the highlight of my life. As far as the " limitations " and the " put on a happy face " sections of Beth's post, I completely empathize with you. When I am able to get out of the house somewhere, and someone asks how I've been doing, I always smile and say things are going well. Nobody REALLY wants to listen to how a day in my life is. But as a result, some people don't realize how challenging things can be for us. My husband's family didn't really have a clue until this summer. We went out to a RibFest with some of them, and they saw how difficult it was for my husband to push me around in a wheelchair, while carrying the 1yr old in a frontpack and pushing the 2.5yr old in a stroller. And because of the heat, I couldn't even transfer myself from the wheelchair back into the car - my hubby had to scoop me up and place me in the seat and put my seatbelt on for me. I think the whole scene just utterly shocked them, but I was thrilled that they finally saw everything my husband does. Now nobody says anything if we decide to turn down an invitation for a get-together! They used to give my husband a hard time about it, and would make comments about us missing family things (we still attend most all of them). But now they help us out a lot when we do go! So I guess maybe it's a good thing to clue people in on how we really are doing, but not to make it the focus of every conversation. I still put on my " happy face " in front of other people, but one of these days I feel I may explode! Sorry this became sort of long and rambling... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 us missing family things (we still attend most all of them). Sorry this became sort of long and rambling... I didn't think it was " rambling " at all, -- and as for " long, " it is a telegram compared to some of mine! It was great to learn more about you and your family. I did not realize you had two little ones -- it is truly amazing what you and your husband have to handle in addition to your MS. I am sure you adore your kids and probably also worry about their adjustment to your situation. I loved the story of how the relatives learned your true situation. I am so glad you are posting! Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Hi , I absolutely understand why you or anyone else with a pump would feel the need for backup medication. The part that was confusing me was why the PM PA seemed alarmed by your request. I guess even if it's their against their policies to fulfill such a request, I expected they'd be accustomed to handling them a bit more sympathetically. I also hoped that since they sort of made an exception to assist you with the pump refill while the insurance mess got straightened out, they'd also make an exception to give you a backup prescription. Obviously, I was once again lost in my fantasy world..... Thank you for bringing me back to reality and telling it like it is. Since I haven't had my revision surgery yet, I feel very fortunate that I can learn from others like you who have already been through things that may be in my future. Even so, I would love to say to those narcotophobic docs, next time they wake up with a horrible headache or if their seasonal allergies are particularly bad, imagine what how they would feel if none of the drug stores would sell them acetominophen or loratadine or anything for it. Multiply that by about 100 and that's how they make you feel by denying you a simple piece of paper to give you some peace of mind! loriann > > Hi, Lori -- > > Thanks for your concern. I realize this response is a little tardy. > > Baxter is a large drug company that puts out brand-name morphine > (Duramorph, Infumorph) as well as a number of other pharmaceuticals. > > People who have been through a pump stoppage or malfunction and some > degree of incipient morphine withdrawal along with a return of the > severe, chronic, intractable pain that led them to be referred for > one of these pumps in the first place are likely to feel more > comfortable with a backup medication for repeat-emergencies. One > woman I talked to finally was given such medication after four trips > to the emergency room for acute withdrawal from medically prescribed > morphine which was not being properly infused by her medically > implanted pump. If I understood correctly, the ER docs, who > evidently knew nothing about pumps and could not understand her > plight, referred her to some kind of Twelve-Step group for senior- > citizen drug addicts. And this is not so far-out, judging from > substantial anecdotal evidence. > > It would also be slightly anxiety-provoking to travel far from home > with no source of pain medication other than one's pump. My surgeon > once told me, " No one wants to handle pumps, " and I am starting to > agree with him. Surgeons remain willing to implant them, but > programming and refills are generally handled by pain management > specialists -- and of these specialists, the ones that handle pumps > seem to be few and far between. I am not really sure why, since they > often prescribe oral narcotics, transdermal patches, etc. Perhaps > the pump is too much of a " pain, " or maybe reimbursement is not very > good for pumps, compared to other pain management modalities? I will > have to research this some more. I also hope to find more time in my > life for the group you found for me -- Pumpsters. They are a > great group and seem to have tons of information on every aspect of > life with a pump. So I do appreciate your steering me their way. > > My first pump was corroded by some (I HOPE) EARLIER morphine > compound I apparently received in the PAST (?) -- i.e., an > inappropriate form of morphine containing a specific dangerous > preservative, not for intraspinal use. That medication came from one > or more pharmacies. There is seemingly no way of knowing when (or > if) I stopped receiving this morphine-plus-preservative at some > point, although I assume that someone changed something by last May > (about four months after my current pump was installed), when my > surgeon received the report from the pump manufacturer explaining > that my pump had stopped not through any intrinsic defect but > because of what was injected into it through my abdominal wall (and > what it then infused through a catheter into my intrathecal space, > at least until the preservative stuff caused it to go kaput). On the > other hand, if I have been receiving pristine, brand-name-labeled > morphine from the beginning, and if the manufacturer now needs to > review its own quality control procedures, all bets are off! > > Nor do I know how long it takes for a neurotoxin and corrosive agent > like the one I was apparently receiving to cause a gear in the pump > to detach completely from its gear train, as mine did. I can only > say that I know the exact day and moment that my first pump came to > a grinding halt -- my whole-body response was unmistakable. I was > not a happy camper. I was glad to have other medicine at home, even > though it brought back the whole horrible experience from which the > pump had finally freed me. It left me dopey, prone to abrupt and > protracted sleep attacks which my narcolepsy medication could not > prevent, unable to get up in the morning until I had built up > sufficient medication in my bloodstream. (Try waking up at, say, 7 > p.m. with a full bladder, and finally making it to the bathroom to > pee around 10 or 11!) So I'm not saying I WANT or LIKE oral meds, > just that they were a necessary evil when I did not have a working > pump. > > I am not all that surprised at the PA's response. Pain in the U.S. > is vastly undertreated. Doctors and their staffs who are not > narcotophobic to begin with are likely to become more and more so as > they continue to practice in today's hysterical climate. Wait, > folks, don't run for the exits, please! -- This has never been a > political group, and I don't want to turn into a stump-orator or > manifesto-thumper at this late date. Well, not too chronically, at > least. But I've gotta say some of the reports and narratives I've > been reading in some of the pain forums are totally hair-raising. > > If I'm not mistaken, Lori, you do not take any potent narcotic > medications yourself for the degree of pain you are having. If so, > you are very blessed, and I pray you never do feel the need for > any " backup meds " yourself. Personally, I had rarely made the > acquaintance of a Tylenol III till about age 48 or 49. But a funny > thing happened to me on my way to becoming spinally revised x > 6 . . . > > Take care, Lori, and let's hope I will answer any other posts you > may have written me in a more timely manner! I am still overdue to > answer who knows how many other posts as well. I guess I've been > just a mite distracted and stressed out lately. > > P.S. Hope your computer is all better now. > > As ever, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 I agree about doctors not being sympathetic! I have a port-a-cath (semi-permanent IV sewn into a vein under my skin near my collarbone) and for some reason it really hurts when a nurse comes to my house to put a needle in to access it. So I asked my neurologist what I could do and he told me to ice it beforehand. I give myself daily shots for MS, and I know that icing does nothing for me!! Luckily, his nurse was more sympathetic and had him write me out an rx for EMLA cream to numb the area first. It works really well! I also have bladder issues and self-cath (thread a small tube up my urethra 6-8x/day to completely empty my bladder). I was having some problems finding the right spot at the very beginning and the neurologist made a comment about how simple it is for females (pain- wise vs males). I looked at him and asked if he had ever cathed himself! I told him it wasn't as easy as it looks in a textbook. If these docs or if our politicians actually had to experience some of the things firsthand that we experience on a daily basis, I bet our whole healthcare industry would get a fast overhaul! > > > > Hi, Lori -- > > > > Thanks for your concern. I realize this response is a little tardy. > > > > Baxter is a large drug company that puts out brand-name morphine > > (Duramorph, Infumorph) as well as a number of other pharmaceuticals. > > > > People who have been through a pump stoppage or malfunction and some > > degree of incipient morphine withdrawal along with a return of the > > severe, chronic, intractable pain that led them to be referred for > > one of these pumps in the first place are likely to feel more > > comfortable with a backup medication for repeat-emergencies. One > > woman I talked to finally was given such medication after four trips > > to the emergency room for acute withdrawal from medically prescribed > > morphine which was not being properly infused by her medically > > implanted pump. If I understood correctly, the ER docs, who > > evidently knew nothing about pumps and could not understand her > > plight, referred her to some kind of Twelve-Step group for senior- > > citizen drug addicts. And this is not so far-out, judging from > > substantial anecdotal evidence. > > > > It would also be slightly anxiety-provoking to travel far from home > > with no source of pain medication other than one's pump. My surgeon > > once told me, " No one wants to handle pumps, " and I am starting to > > agree with him. Surgeons remain willing to implant them, but > > programming and refills are generally handled by pain management > > specialists -- and of these specialists, the ones that handle pumps > > seem to be few and far between. I am not really sure why, since they > > often prescribe oral narcotics, transdermal patches, etc. Perhaps > > the pump is too much of a " pain, " or maybe reimbursement is not very > > good for pumps, compared to other pain management modalities? I will > > have to research this some more. I also hope to find more time in my > > life for the group you found for me -- Pumpsters. They are a > > great group and seem to have tons of information on every aspect of > > life with a pump. So I do appreciate your steering me their way. > > > > My first pump was corroded by some (I HOPE) EARLIER morphine > > compound I apparently received in the PAST (?) -- i.e., an > > inappropriate form of morphine containing a specific dangerous > > preservative, not for intraspinal use. That medication came from one > > or more pharmacies. There is seemingly no way of knowing when (or > > if) I stopped receiving this morphine-plus-preservative at some > > point, although I assume that someone changed something by last May > > (about four months after my current pump was installed), when my > > surgeon received the report from the pump manufacturer explaining > > that my pump had stopped not through any intrinsic defect but > > because of what was injected into it through my abdominal wall (and > > what it then infused through a catheter into my intrathecal space, > > at least until the preservative stuff caused it to go kaput). On the > > other hand, if I have been receiving pristine, brand-name- labeled > > morphine from the beginning, and if the manufacturer now needs to > > review its own quality control procedures, all bets are off! > > > > Nor do I know how long it takes for a neurotoxin and corrosive agent > > like the one I was apparently receiving to cause a gear in the pump > > to detach completely from its gear train, as mine did. I can only > > say that I know the exact day and moment that my first pump came to > > a grinding halt -- my whole-body response was unmistakable. I was > > not a happy camper. I was glad to have other medicine at home, even > > though it brought back the whole horrible experience from which the > > pump had finally freed me. It left me dopey, prone to abrupt and > > protracted sleep attacks which my narcolepsy medication could not > > prevent, unable to get up in the morning until I had built up > > sufficient medication in my bloodstream. (Try waking up at, say, 7 > > p.m. with a full bladder, and finally making it to the bathroom to > > pee around 10 or 11!) So I'm not saying I WANT or LIKE oral meds, > > just that they were a necessary evil when I did not have a working > > pump. > > > > I am not all that surprised at the PA's response. Pain in the U.S. > > is vastly undertreated. Doctors and their staffs who are not > > narcotophobic to begin with are likely to become more and more so as > > they continue to practice in today's hysterical climate. Wait, > > folks, don't run for the exits, please! -- This has never been a > > political group, and I don't want to turn into a stump-orator or > > manifesto-thumper at this late date. Well, not too chronically, at > > least. But I've gotta say some of the reports and narratives I've > > been reading in some of the pain forums are totally hair-raising. > > > > If I'm not mistaken, Lori, you do not take any potent narcotic > > medications yourself for the degree of pain you are having. If so, > > you are very blessed, and I pray you never do feel the need for > > any " backup meds " yourself. Personally, I had rarely made the > > acquaintance of a Tylenol III till about age 48 or 49. But a funny > > thing happened to me on my way to becoming spinally revised x > > 6 . . . > > > > Take care, Lori, and let's hope I will answer any other posts you > > may have written me in a more timely manner! I am still overdue to > > answer who knows how many other posts as well. I guess I've been > > just a mite distracted and stressed out lately. > > > > P.S. Hope your computer is all better now. > > > > As ever, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Lori, Exactly! Thanks. > > > > Hi, Lori -- > > > > Thanks for your concern. I realize this response is a little tardy. > > > > Baxter is a large drug company that puts out brand-name morphine > > (Duramorph, Infumorph) as well as a number of other pharmaceuticals. > > > > People who have been through a pump stoppage or malfunction and some > > degree of incipient morphine withdrawal along with a return of the > > severe, chronic, intractable pain that led them to be referred for > > one of these pumps in the first place are likely to feel more > > comfortable with a backup medication for repeat-emergencies. One > > woman I talked to finally was given such medication after four trips > > to the emergency room for acute withdrawal from medically prescribed > > morphine which was not being properly infused by her medically > > implanted pump. If I understood correctly, the ER docs, who > > evidently knew nothing about pumps and could not understand her > > plight, referred her to some kind of Twelve-Step group for senior- > > citizen drug addicts. And this is not so far-out, judging from > > substantial anecdotal evidence. > > > > It would also be slightly anxiety-provoking to travel far from home > > with no source of pain medication other than one's pump. My surgeon > > once told me, " No one wants to handle pumps, " and I am starting to > > agree with him. Surgeons remain willing to implant them, but > > programming and refills are generally handled by pain management > > specialists -- and of these specialists, the ones that handle pumps > > seem to be few and far between. I am not really sure why, since they > > often prescribe oral narcotics, transdermal patches, etc. Perhaps > > the pump is too much of a " pain, " or maybe reimbursement is not very > > good for pumps, compared to other pain management modalities? I will > > have to research this some more. I also hope to find more time in my > > life for the group you found for me -- Pumpsters. They are a > > great group and seem to have tons of information on every aspect of > > life with a pump. So I do appreciate your steering me their way. > > > > My first pump was corroded by some (I HOPE) EARLIER morphine > > compound I apparently received in the PAST (?) -- i.e., an > > inappropriate form of morphine containing a specific dangerous > > preservative, not for intraspinal use. That medication came from one > > or more pharmacies. There is seemingly no way of knowing when (or > > if) I stopped receiving this morphine-plus-preservative at some > > point, although I assume that someone changed something by last May > > (about four months after my current pump was installed), when my > > surgeon received the report from the pump manufacturer explaining > > that my pump had stopped not through any intrinsic defect but > > because of what was injected into it through my abdominal wall (and > > what it then infused through a catheter into my intrathecal space, > > at least until the preservative stuff caused it to go kaput). On the > > other hand, if I have been receiving pristine, brand-name- labeled > > morphine from the beginning, and if the manufacturer now needs to > > review its own quality control procedures, all bets are off! > > > > Nor do I know how long it takes for a neurotoxin and corrosive agent > > like the one I was apparently receiving to cause a gear in the pump > > to detach completely from its gear train, as mine did. I can only > > say that I know the exact day and moment that my first pump came to > > a grinding halt -- my whole-body response was unmistakable. I was > > not a happy camper. I was glad to have other medicine at home, even > > though it brought back the whole horrible experience from which the > > pump had finally freed me. It left me dopey, prone to abrupt and > > protracted sleep attacks which my narcolepsy medication could not > > prevent, unable to get up in the morning until I had built up > > sufficient medication in my bloodstream. (Try waking up at, say, 7 > > p.m. with a full bladder, and finally making it to the bathroom to > > pee around 10 or 11!) So I'm not saying I WANT or LIKE oral meds, > > just that they were a necessary evil when I did not have a working > > pump. > > > > I am not all that surprised at the PA's response. Pain in the U.S. > > is vastly undertreated. Doctors and their staffs who are not > > narcotophobic to begin with are likely to become more and more so as > > they continue to practice in today's hysterical climate. Wait, > > folks, don't run for the exits, please! -- This has never been a > > political group, and I don't want to turn into a stump-orator or > > manifesto-thumper at this late date. Well, not too chronically, at > > least. But I've gotta say some of the reports and narratives I've > > been reading in some of the pain forums are totally hair-raising. > > > > If I'm not mistaken, Lori, you do not take any potent narcotic > > medications yourself for the degree of pain you are having. If so, > > you are very blessed, and I pray you never do feel the need for > > any " backup meds " yourself. Personally, I had rarely made the > > acquaintance of a Tylenol III till about age 48 or 49. But a funny > > thing happened to me on my way to becoming spinally revised x > > 6 . . . > > > > Take care, Lori, and let's hope I will answer any other posts you > > may have written me in a more timely manner! I am still overdue to > > answer who knows how many other posts as well. I guess I've been > > just a mite distracted and stressed out lately. > > > > P.S. Hope your computer is all better now. > > > > As ever, > > > Quote Link to comment Share on other sites More sharing options...
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