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    Old 05-05-2005, 03:52 PM   #1
    sickofpain12
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    Exclamation Is this humane treatment??

    Hi everyone!
    I am a long time reader here, and as you can tell from my screen name....I am sick of pain!! I am a 34yr old female, and have already had 2 surgeries on my L5 S1 area. A Semi-laminectomy in May of 2003 and most recently an anterior fusion of L5 S1 w/4 screws, titanium plate, and cadaver bone. (Not my own hip bone)...that was done on Dec 29th 2004. Since the surgery I have not been able to reduce the amount of pain medication I am taking, and the pain has not gone away at all!! I am currently taking 2 Norco 10/325 pills every 6 hours for a total of 80MGS of hydrocodone per day. The surgeons office has done an MRI of my neck, another MRI of my lumbar spine, as well as x-rays of my thoracic spine....they say there is nothing that jumps out at them to be a reason as to why I'm still in such pain...of course.
    My question is this...they have referred me to a pain specialist, and I made the apt for the 24 of this month, which is the soonest they can get me in. My refill date is tomorrow so I called my refill in like usual and they denied it!!
    I have a call in to them to let them know the pain doc couldn't see me until the 24th and to ask why they would just cut me off like that with no warning. I don't think they know what they are doing....is that usual to cut somebody off like that w/o tapering them down at all?? I am petrified of withdrawal....I've been there before and don't plan on making a return trip.
    I have also been DX by my previous primary care doc w/fibromyalgia, so the world of pain is not new to me at all! I am wondering if anyone can give me any suggestions as to how to make this work??? Please??

    Thank you so much....I really appreciate it!
    Karen
    (who is really really sick of pain!!)
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    Old 05-05-2005, 04:40 PM   #2
    SheSparkles
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    Re: Is this humane treatment??

    Hi Karen,
    This sounds like what so many surgeons do post surgery. Why can't your PCP keep up your pain med till the PM Dr. takes over? Seems like the obvious solution to me so what am I missing?
    SS

    PS and of course the surgeon's treatment is inhumane...but almost predictable sadly...........

    Last edited by SheSparkles; 05-05-2005 at 04:42 PM.

     
    Old 05-05-2005, 08:25 PM   #3
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    Re: Is this humane treatment??

    Hi Sick Of:
    I'm sorry to hear of your pain... as Sparkles says, this too was my experience with my surgeon (Rectal Cancer). So, different type of surgeon, but they are all the same with this respect in my experience. I think once your surgeon learns that you have an appointment (the soonest available) on the 24th, he or she SHOULD be willing to continue your therapy until then. If you need to get nasty, you can and let him know that he "got you hooked" on these drugs, and it is his responsible to refer your care to someone else to Rx... like you are doing, or give you fare warning to wean you appropriate.

    Good Luck, and Keep us Posted.

    Regards,
    CDad

     
    Old 05-05-2005, 09:09 PM   #4
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    Re: Is this humane treatment??

    Hi Karen! Congrats on your first couple of posts! Yipee! You will find a lot of caring folks on these boards.

    I wanted to invite you to post on the Fibromyalgia board also. I have Fibro (dx'd in March '02) as well as multiple herniated discs and a plethera of painful conditions. Last count was about 5 different conditions! I know how frustrating Fibro can be. It's good you are getting to see a PM doc, since most docs who treat Fibro are reluctant to give out narcotics for Fibro pain.

    I first saw my PM doc when my back started bothering me in 2002 and it was the best referal my PCP ever gave me! I have a referal, finally, with a neurosurgeon, as the docs think I may have some pretty severe nerve damage now, so I can't wait to see what he says, and I also am anxious for a new MRI on my lower back to see what's going on in there.

    Anyway, I just wanted to "ditto" what has already been said here about your situation. You will find a lot of good info here on the PM board. Much experience with many different kinds of pain can be found here. A lot do to with back pain. But you will get good advice about doctors, meds, treatments, etc. As well as understanding and compassion. The same goes for the Fibro board. So come visit us Fibromites there when you feel like it. And I will see you around the PM board for sure!

    Nice to meet you!

    Here's wishing you a good spirit! And keep us updated on your situation.

    tk

     
    Old 05-06-2005, 06:38 AM   #5
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    Re: Is this humane treatment??

    Hi Karen, I've had a laminectomy and 2 fusions that failed and the hardware snapped or toggled out of position, the last was a 6 level posterior lumbar fusion L1-S1, Every surgery I have ever had, the surgeon decides when I no longer needed meds. I was in the same position where they found a PM clinic and the clinical diecetor would be my PM doc and do the follow up after the clinic, but ther was a 2-3 week lapse between the time the surgeon referrred me and I first made contact with the group to determine if I was a good candidate for their PM program.

    Once I had seen the PM doc , although the next round at the clinic didn't start for 3 weeks,The surgeon cut me off completely, They had to send paper wortk stating that the surgen would no longer be prescribing any meds and all meds would be managed by the clinic once I actually got into the PM clinics program.

    Yes it stinks, but having been through this many times over 12 years, I pretty much new the day would come, Every Monday when I called the doc for my 30 vicodin a week that took the edge off enough to keep me from wanting to eat a bullet while bed ridden was the standard of treatment. Surgeons aren't obligated to prescribe for any set amount of time, They aren't obliged to make sure you have continous access to opiates even though the clinic may very well use them and going through withdrawal is completely pointless when meds are gong to be reinstated after you have gone through the worst of it.

    BUt It wasn't too long ago when there was no such thing as OxyC or Kadian and Duragesic was aproved for cancer only. Somehow folks managed severe post op pain with 2 5 mg percs every 4 hours, they didn't make the 10's untill about 2 years ago.Ty didn't make 15 and 30 mg roxi either. You made due with what was the standard ortho post op pain meds, Two 5 mg percs for the first few weeks and then back to hydro products.

    Going straight from surgery and a slow recovery to PM seems to be the easiest thing for surgeons to do now adays. They don't have to have a confrontation regarding their suspicions that their surgery worked and the problem is the patients. A pretty general attitude among surgeons. Is it cruel, yes it is, But on the other hand should people that have surgery never be asked to discontinue opiate medication. Prior to 96 a PM clinic would have meant antidepressants,more PT, maybe antiseizure meds, alot of relaxation techniques like bio feedback, self hypnosis, guided imagry and yoga. Pehaps a tens unit and trigger pont injections and the word of that day was learn to cope and somehow survived this "cruel" treatment.

    With the latest pressure from the DEA , even the most generous and compasionate PM docs have to cross every T and dot every I, show how other methods have been tried and failed before they can safely prescribe the stronger longer acting meds available to treat intractable pain.

    Even today, there are plenty of PM clinics and docs that don't use opiates. THis clinic you go to may not, so whether you withdrawal before or while at the clinic it may be inevatable. You may need to jump through all the hoops the docs feel neccesarry in order to justify using opiates as a last resort. If you haven't tried anything other than PT at this point, it's hard to justify opiates are the last and only resort.

    People manged befoe OxyContin was around. It wasn't fun, and any bit of relief we got was fought for and only found through trial and error. I've been to 4 PM clinics and completed their programs, saw a dozen other PM docs in Private pactice and it wasn't untill the last clinic and the last surgery before opiates were ven mentioned as a posiblility.

    These boards may give the impression that these meds are out there and if your pain is legit it should be treated with opiates, but what you don't really get by reading posts is everything that led up to finally finding a way to manage our pain. Only the latest generation is going straight from surgery to LA opiates because they still have pain and that's still very risky for the doc and as major consequences for the patient. Fusions take a good year to determine if they were sucesful or not, and surgeons won't keep you on meds for a year while they wait to see how you respond to their surgery.

    If everyone had the belief that pain meds never had to end after surgery, they never would. Surgeons would refer straight to PM and PM would continue the meds the patients say work. But that's not any standard of practice, it's reckless medicne. So as cruel as it may seem you have to actually go without meds 6 months post op, It's not unusual and well within the standards of care.

    IF a PM doc want's to stay in biz and prescribe opiates he better be able to justify their use, through DX, through other methods tried, failed and documented and by putting measures in place to prevent abuse and diversion like random UA's, psych testing, pill counts, etc etc etc..

    Many people have surgery and don't continue to have pain, However with the news constantly reporting how OxyC sells for a dollar a MG, it's profitable and worth the risk to those that have been cured by surgery but can claim to be in pain. They shop untll they find a doc who's a soft touch and a sngle bottle of meds will more than pay their monthly mortgage. So there is great incentive to abuse the system, either from addiction or for financial gains. That's what makes it harder for golks that truly need these meds.

    Basicaly you have to show them that your willing to try anythng they suggest, If a doc is foolish enough to prescribe without trying any other method of PM, his patients will show up for apts some day and their will be a notice on the door from the DEA. IF you thought DCing perccocet was bad, try DCing sevral hundred mgs of OxyC, methadone or MScontin after a few months on the most potent meds available.

    It's one of those fears that we all have. Will our doc continue to practice in our area, will we be able to find another doc to continue care fif this one leaves. Will drug seeking patents cause the downfall of our doc. These are just all part of the politics of pain management and the DEA holds the reigns with the threat of loss of licence, prison and the end and waste of all the work in med school by prescribing to the wrong person or one that abuses and OD's.

    Docs have to screen and be caustious and try other methods in order to justify the way they prescribe to each and every patent. Even an investigation where the doc isn't arrested will shut a practce down for months while each case is reviewed and followed up on. IF they feel the doc does no more than write scripts for anyone that complains he won't be around long.

    Hopefully the doc or clinic your going to use a multi faceted apraoach to PM, meaning something different for everyone different. What works for one may not another. Thereis also no point in starting everyone on opiates if Ultram or Cymbalta or an anti seizure med would manage their pain. Ideally each case is evaluated and treated independently, you don't want to be lumped in with everyone else where a doc believes his one or two methods work for everyone.

    Just as surgeons believe they can cure you and relieve your pan with surgery , Many PM docs believe that their methods when followed properly will manage any and all pain. Obviously you can't hammer every square peg through the same round hole, but many PM docs have that exact belief.

    Your GP may be wiling to help, or you may find the surgeon has alerady forwarded his opinion about your opiate use to your GP and may not be willing to help if he believes the same BS that everyone asking for pain meds is simply drug seekng. His surgery worked so that can be the only rational ************ for continued complaints of pain. My last surgeon thought I was stupid enough to believe, that out of 1300 fusions , I was the first to ever have continued pain after surgery. Please... Aside from being statistically impossible, My hardware was broken and there wer already gaps in the fusins at 9 months out. But to recognize these problems would be the same as recognizing his own surgerries failure. Often the ego gets in the way of being honestly evaluated after surgery when things aren't going well.

    I do wish you luck but please don't think relief comes as easly as a referal and a complaint about pain. Likely you will try other methods, hopefuly he will manage your pain while trying these other methods but the meds being available doesn't mean everyone is entitled to them or the use is even wise for every patient that complains of pain. PM is much more complicated than simply writing a script for a stronger longer lasting med. IF it were, the DEA wouldn't be all over every PM docs back side that is using opiates when other methods fail.

    I have an intrathecal pump that delivers dilaudid directly to my spine, it only needs to be refilled every 85 days, and yet the DEA demands my doc see me on a monthly basis for constant reevaluation of his treatment plan.

    Then you have the whole dependnece Vs addiction issue, problems with friends and family that don't understand and your other docs that won't aprove of a PM treatment plan. It's just not as simple as geting into the door of a PM clinic or PM practice . There is no gaurentee that the PM doc your scheduled to see even believes in usng opiates to treat chronic pain .

    It's all trial and error and even the best PM docs are only shooting for a 50% reduction in pain, so it's best to have some other tools to help with the remaining 50% you do have to learn to live with.
    Good luck andlet us know how things go.
    Take care, Dave

     
    Old 05-06-2005, 09:06 AM   #6
    BrittleBones
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    Re: Is this humane treatment??

    Welcome to the board! I can completely relate to what you are feeling right now. My biggest fear before I was referred to a caring doctor at a pain management clinic was not being given a refill on my pain medication from my surgeon. I knew that my surgeon wasn't the one who was responsible for prescribing my pain meds for eternity, but I was experiencing broken vertabrae about every 4 months and having fusions at the same rate. So I never really go off the meds... When my surgeries were finally over but my pain persisted, he was quick to refer me out. I did go through many other pain management options. Some of them worked temporarily, but I was on some form of meds the whole time. I have been through withdrawal too many times in my life and I know how terrifying it is psychologically and how painfull it is physically. Hope you can find a way to stay pain-free until you see the PM doc. If things get really bad, you could always go to the emergency room to see what they can do to tide you over. I would be totally honest with them about what you are going through.

    Last edited by Administrator; 05-07-2005 at 07:57 PM. Reason: inappropriate: agree to disagree and mind your own business

     
    Old 05-06-2005, 09:33 AM   #7
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    Re: Is this humane treatment??

    Me again!

    I wanted to add to the topic here, if I may. I want to say that I believe Pain Management is a wonderful thing. My doctor is very compassionate and willing to help me, just to see that my pain is reduced. However, I had already gone through PT (still do) Epidural injections, all the non narcotic meds, and I do see a Psyc on a regular basis. So I understand what Dave is saying, it all ties together. I believe it has to or people will never try any other method to see if maybe PT or Auqua Therapy or whatever else may help reduce their pain without narcotics. Personally, I am frustrated at all the medication I have to take for all my different conditions. It affects every aspect of my life, but on the other hand, I can imagine what my pain would be like without some of the meds I use. I am currently in PT for trigger point release massage therapy for two weeks and then for two weeks I'll be in a mild strengthing regimine. Next month I'll be in Auqua Therapy. I believe, even with the condition of my back, that I have to try and keep my muscles working, and hopefully one day I will not need such strong meds. I am hoping to have surgery on my lower back, but given the nerve damage I have already been warned that it isn't going to be totally repaired. That's okay, as long as some of my back pain is gone, enough to allow me to bend, lift, walk, and twist, at least better than I can do now, which is nada. Then there is the issue of my hip. I have a hard mass on my right hip, bursitis maybe, but my doc wants an MRI to see. The pain in my hip is sometimes worse than the pain in my lower back. But, I have to agree with Dave somewhat here as for post op. How will you know if your surgery was sucessful if you are on strong pain killers. I don't know what is going to happen to my pain regimine after surgery. I have a PM doc and I'm sure I'll see him for treatment for pain after surgery because I have a contract with him and can't really get any narcotics from another doc. I've already spoken to my PM doc and he intends on seeing me post op and if my surgery is successful and my pain is reduced because of it, he is still going to treat me for the pain of FM, although I imagine, and hope I won't need half the meds I am using now, or at least as strong as they are now. I personally will not tolerate FM pain if I don't have to. I will continue to exercise after I get my back and hip fixed, because I know that exercising is the key to helping your body fight off pain naturally (if you can manage it). But I also know that even with the exercise, FM pain and pain from CMPS will always break through, and if I can use pain meds for those times, I fully intend on it. I can honestly say that the pain from FM can surpass any other pain I have from anything else by leaps and bounds. Imagine having the flu every day of your life.

    But, I got off target there....sorry! I just wanted to say that while I am a strong advocate of PM, if it's done correctly and includes a multi faceted approach, I am anxious to see how my pain is reduced after I have surgery. I am on some pretty heavy meds, so I'll have to wean, maybe stop using my patch and use just the hydromorphone or something different while I heal. I just want something that will allow me to "feel" if the surgery worked, or didn't work. I already know I'll be in a lot of pain, but I am in pain every minute of every day anyway, a kind of pain that flucuates throughout the day, sometimes causing me to curl up on the bed, and yes, it sucks. So, I too am anxious to have surgery and hopefully I can reduce my pain meds, but I also believe I won't be able to tell if the surgery worked if I continue the strong meds I'm on now following the surgery. I'll have to let it heal without being "masked" too much. But I know that I would not want to have surgery and then go without any meds for a few weeks, simply because I know I would go through withdrawl and that too will interfere with knowing if I am healing right. So, it's truley a Catch-22 isn't it? Your body depends on the meds, you need to "feel" your surgery after effects, but you don't want to feel the after effects of quitting meds that you may have been on for years either. So, it's difficult. You need the surgery, you may still need the meds, you may go through withdrawl, you need to know if your surgery has relieved your pain, your body is used to the meds, it's frustrating going from managing your pain, to FIXING your pain.

    So, I hope you find a good combination that will get you fixed up, Karen. Oh and you should know that having surgery will most likely cause your FM to flare. Sorry to bear bad news, but you know that stress and trauma cause FM to flare up, I just want you to consider that and not be suprised if it happens. There has been clinical research done to FM patients that show the part of the brain that reacts to pain doesn't work properly. FM pt's were administered a mild pain stimulant while being administered an MRI and the part of the brain that is supposed to work against the pain didn't function in "full force". Proof that we Fibromites do not have the brain capacity that works correctly while receiving pain. I have more info about this study regarding the part of the brain that tries to reacts to pain and how it relates to the cognetive thinking part of our brain (Fibromites brains ) if you ever want to know more. So while you are recovering try to maybe take some supplements that help keep Fibro at bay. Fibro loves it when your body isn't at it's best, just don't let it get the better of you while you are trying to heal. There is a lot of info on the Fibro board for things you can do to keep from flaring too badly. The very first post is a post of different supplements you can take that are recommended for Fibro people. It's a "sticky" thread started by me.

    Please keep us posted. When is your surgery? You probably said, but my memory doesn't go past the end of my nose!


    Here's wishing you a good spirit,
    tk

    Last edited by tkgoodspirit; 05-06-2005 at 09:45 AM.

     
    Old 05-06-2005, 01:28 PM   #8
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    Re: Is this humane treatment??

    Thank you all so much for your replies. I am sorry for not responding before now, my email response wasn't clicked! Anyway, the surgeon did call me and said he had denied it becuase he wanted to talk to me before refilling it. He says this is his last one and the pain doc will decide "what to do with me". Excuse the HE** out of me for still hurting!!
    To Dave's point....yes, I know the surgeon's office will cut me off eventually...that's a no brainer. Yes, I KNOW there are several other ways other than opiates to releive pain.....I have done pretty much everything, PT, relaxation, stretching, acupuncture, a few (5) ESI's (done over the last almost 3 years)....oh yes, let's not forget NSAID therapy, Antidepressant therapy....sleeping pills, IE Elavi, Seroquel, etc... so the world of pain management is not new to me....hence my screen name...(sickofpain12). I KNOW back in the "old days" there were not any meds to help people...and, NO, I'm not trying to just get pills. I wanted some information as to why I would be cut off without any weaning, tapering or even discussing getting off the medication in any way.
    I think somebody mentioned a GP...that is a story in and of itself. I had a WONDERFUL GP who was kind and compassionate. That's where I tried most of the above mentioned things...oh forgot one...chiropractic therapy--YIKES!!! During that time I would have been wonderfully happy if any of them did a dang thing to releive the pain. He eventually had me on 20MGS of Oxycontin x3 per day along w/up to 6 5MG percocets daily for BT if needed...they weren't needed too much. Well, in steps a not so understanding husband who didn't like me to take meds becasue of the nasty rep they were getting (this was during the whole Rush Limbaugh thing) so he basically gave me an ultimatum....him and my daughter or the pills. You know which route I went....he made me "fire" my GP and go to the doctor that he worked with at the hospital he works at. Now, this new doctor works in a rehab unit so I thought he would be good at taking me off slowly...wrong...I did have to suddenly DC the meds with nothing but clonodine. Needless to say, I still had the pain and was told it was only PAWS...finally he agreed to "let" me have another MRI...he got the results and immediatlely "let" me go to a spinal disorder clinic. They did the fusion 4 months ago and here I sit, still in pain. I can't "excercise"....I can't really do anything...the back pain and pain in my mid-back as well as both shoulders is immense. I know I will probably have to do everying over again since it's a new pain doc...so I will probably have to DC the meds I'm on now as well, which is a shame because they help. The pain is not totally gone, but they take the edge off enough to be able to work, perform my "family" duties, etc... Oh, and BTW, my hubby is completely on board w/me now and feels absolutely horrible for making me give up my old GP...and we are all (my whole family) "firing" this other GP that we had been going to.....the dr. I am referring to is not compassionate at all...not just because of what he did to me, but where my hubby works on the alzheimers unit, they had an elderly patient w/cancer and dementia who was terminal. The night she died she was wailing, moaning, and screaming in pain...the dr denied her any pain meds in her final hours stating "she is dying, she doesn't know what's going on"....yeah...he's fired!!
    Sorry for rambling, I appreciate all of your wisdom here, I really do. So, I think I have enough meds to last until the 24th--I haven't picked them up yet. I hope so, or that's another battle in and of itself. I hope to be able to post more and help out where I can. Thanks for making me feel welcomed (for the most part anyway!) and yes, I will check out the fibro board as well as the MS board----the surgeon mentioned something about my neurological tests being indicitave of MS as well.....but didn't pursue it so it must not be that bad.

    Thanks,
    Karen
    (sickofpain12)
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    Old 05-06-2005, 09:38 PM   #9
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    Re: Is this humane treatment??

    [
    Hey Karen,

    I am SO stupid! I misread your post! I thought you were GOING to have the surgery, I didn't understand that you already HAD surgery! Ahhhh, I blame it on Fibro Fog. Sorry about that hon, you probably thought I was nuts!

    I understand about the MS, and you are right not to be too concerned right now. Worry about that next. I just found out, in researching Epstein Barr virus that I could possibly have MS, I show a lot of the symptoms, but it's hard when you have FM and CFIDS, cuz docs like to put everything you are feeling as a symptom of FM. But hopefully my neurosurgeon will order a brain MRI if I ask him. Just to check, what could it hurt right? Right now I need an MRI on my lower back and my right hip more.

    So, I'm sorry I got confused. Must be the meds. I hope you are feeling better soon.

    Here's wishing you a good spirit,
    tk

    P.S. Can you go back to your old GP?

    Last edited by Administrator; 05-07-2005 at 08:21 PM.

     
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