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Why is there no collaboration in Pain Management?

i went to the pain management doc at my neurosurgeon's office today. i can't take much more. she wants me to taper off oxycodone 10 mg. 3x/day with 30 pills left before my spinal fusion in a month on 3/4. prior to this month for over 2 years, i was prescribed oxycontin 20 mg. 2x/ day.

i tried to be a compliant patient and acclimate to the oxycodone in mid january. the duration is much shorter than oxycontin, so the transition was painful. i honestly feel my level of pain would be managed with a long acting narcotic to get any relief and comfort. this request and expectation is unrealistic! is now a good time to discontinue my pain meds?with a spinal fusion just around the corner, i felt frustrated, angry, outraged and shocked.

here is the pain management plan.... Lyrica 50 mg. once daily for 3 days, then increase to twice/ daily. i will also have tramadol 50 mg. up to 4 x/ daily.

and here is the post-op pain management.... percocet 5/325 4 x/ day as needed and valium 5 mg. 3 x/ day as needed. both of these meds are for 3 weeks only. then i am expected to take an NSAID.

when i got upset during the consult, she said my reaction indicated a physiological dependence on a drug that does nothing more than "dull my brain". i have legitimate severe, chronic pain for years now. struggling every day just to get my pants on and wipe myself after using the toilet. unable to shower completely because i can't bend to do my feet. unable to feed my puppy who needs to eat 4 x/ day, and having to rely on my husband to do every household duty, including cooking. we can't even keep items on the bottom two shelves of the fridge, as i can't bend over to get them. unable to go to the grocery store, as i can't put the items in and take them out of the basket. leaving things that drop to the floor because if i do bend over, it will start the pain up to high numbers, and i won't be able to settle for hours. staying awake until 3 am because i can't fall asleep for the pain.

you know what? i didn't choose this chronic pain- but i have to live it. it runs my life, and has changed me into a sad and desperate person who can't manage to leave the house and sit through a nice meal somewhere without dearly paying for it afterwards. even with the oxycodone, it was still prominent. but at least it made it tolerable for the most part.

she gave me her plan, and i have my own. arizona, like california is a medical marijuana-friendly state. i had a medicine card there, and i will get another one here, too. i used minimal amounts of a saliva that was energizing, yet had narcotic properties. i found i was able to take less narcotic, felt motivated to do light things like fold the laundry and walk more. of course, i used it as an adjunct to prescribed narcotic analgesia in the hopes that it would decrease the frequency of doses. it was effective.

if i am sentenced to a life of chronic pain, i WANT something that "numbs my brain". who cares if i have a physiological addiction? any chance at relief is acceptable to me. shouldn't it be my choice if i decide to take opioids under the circumstances? the likelihood that the pain management doctor who is deciding treatment choices for me has never dreamed of living with this level of pain.

many people share my struggle with chronic pain. it's inhumane to withhold the one thing that might make life tolerable! just like i made an informed decision to use a spinal fusion as a treatment for pain, i should be able to choose opioid analgesia. here's the deal... i got hurt on the job as a health care professional, and i have been suffering ever since. i am a professional who had an accident which changed my life. i am not a criminal. yet, i certainly have been made to feel like a criminal.

nor am i a drug addict. at the dose of oxycodone i was on.... the "high" and euphoric properties were gone a long time ago. yes, i am tolerant- but i always struggled to keep my dose minimal, and not increase despite the offer from my doctor to do so when she could observe an exacerbation in symptoms. the cold hard fact is that i will never be comfortable taking NSAIDS. the unarguable fact is that my pain is severe, and cannot be managed by an NSAID. i really don't need a treatment team to save me from addiction. what i need is a team who will honor and work with the choice decided upon by the patient after all options for management are explained. there was no choice involved here, no options to discuss. i was presented with the decision of the provider which insisted i discontinue pain treatment that is partially effective, allowing me some relief from unrelenting misery. my personal belief is that any pain treatment chosen by the patient who is under contract with one provider is acceptable. legitimate pain that is backed up by examination and diagnostics should be treated in conjunction with the patient suffering the pain. period. to dictate a cookie-cutter plan devised by a particular provider that is utilized across the board with all patients despite their true assed level of pain is dictatorial and cruel. being told 33 days pre-op that you are expected to taper your own 30 doses of medication prior to surgery is physically unrealistic and psychologically unsound. maybe someone can share with me the actual patient benefit in executing this mandate? deciding to undergo a spinal fusion with a less than stellar successful outcome rate is difficult enough. dumping the plan described above on someone who has documented, legitimate pain needs is cruel and unnecessary.

i proposed that the taper be done post-operatively rather than before surgery. i said i was willing to work with a plan to decrease my dosage of analgesia when i was showing some signs of positive response to my surgery with the hope that the target symptoms would be diminished, making a taper more acceptable and realistic. NO. with no offer of assistance or guidance in attempting a taper which was supervised and supportive, i have to choose the best way i can figure out on my own- knowing my pain levels will dramatically increase at a time when i should be as stress free and comfortable as possible.

i have never doctor shopped, diverted, bought on the street, bought on the internet from canada or lied about my pain to get narcotics. i worked with my pain management/ physiatrist in california collaboratively to determine the dosage i required to achieve a decrease of pain to a tolerable level. an environment was created where i made the choice to accept opioid tx. despite the almost certain result which is dependence. even with a spinal fusion, the success rate is only roughly 60 %. the best outcome one can realistically hope for is an increase in mobility and decrease in pain. it never truly goes away completely. the fusion placement often places pressure on nearby discs, so the notion of being "pain free" from this level is not likely.

medical marijuana is legal. i do not plan to obtain drugs illicitly, or even search for a less conservative physician who will prescribe the dose that i need to manage some relief. i will confer with the doctor at the MM clinic to assist me in maybe finding another strain that may work better than the one i have used. if my surgery leaves me with residual pain, my hope is that i can manage it with MM.

i am completely disgusted, insulted and as a health professional i fail to see the plan given to me as effective, fair or humane. chronic pain is a medical diagnosis that warrants effective treatment. i am tired of under treated pain to be deemed acceptable in the medical community. enforcing a narcotic agreement should be a safe enough umbrella under which the provider can safely practice, and ensure the maximum comfort and least amount of suffering for their patients with intractable pain. we feel badly enough as chronic pain sufferers to be a burden on those around us who are forced to watch our suffering. demanding that patients be forced to self detox prior to surgery is unacceptable. i always admired physicians as gifted professionals who treat the sick and alleviate suffering. my faith in that role has been severely challenged. .


  • dilaurodilauro ConnecticutPosts: 9,877
    1 - Pain medications are NOT meant to eliminate your pain
    2 - To manage pain, short term or long term chronic pain you need a complete set of medications and other treatments
    3 - When anyone talks to their doctors indicating that their pain meds are not doing it and they want me, that person will get labeled. Many times in a negative way
    4 - As a health care person, I would assume you understand how everything works together
    5 - Your comment about legit MJ... thats fine, but when you say
    bassetmommy said:

    , i WANT something that "numbs my brain".
    So many of us are sentenced to a life of chronic pain. Its all about how we deal with it that matters. We can not look to others to help us through this. Instead, we have to reach down deep inside ourselves and figure out how we can do it.

    And thousands of us do it every single day
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • In my opinion, I would do the following.

    1. Research NSAIDS and spinal fusion surgery.
    2. If your condition is not an emergency, go find a physician and post op support structure that won't take the easy way out.

    They are going to bill out the procedure for 100k+ so make them work for it. My father is a physician and a living example of a HUMAN that just spent a little more time in school than the rest of us. If they say something that does not sound right, respectfully question them and keep looking if you have to. They are not all that way.
  • bassetmommybbassetmommy Posts: 50
    edited 02/02/2013 - 8:05 AM
    as i previously mentioned, my longstanding dose of pain med is oxycodone 10 mg 3X/ day.

    since finding out about the need for surgery, i have not been sleeping, been irritable, anxious, labile and forgetful. i am actively treated for bipolar illness, but manage to be stable for the most part. somehow, this news (in conjunction w/ other stressors like just moving here 12/13) really affected me. i finally went to my psychiatrist yesterday prior to the pain mgmt. consult. he diagnosed me as bing in a dysphoric mania, or mixed state. my depakote and klonopin were adjusted. it was suggested i be seen weekly until surgery.

    the pain mgmt. consult put me over the edge. i apprised her of my current mental status, and she could clearly see i was having a difficult time. none of this seemed to be taken into consideration, nor did she ask me any questions. she executed the mandated plan of rapid self opioid detox, and ended the visit.

    after a good night sleep, i called my psychiatrist. i am still awaiting a return call. i want to see what his opinion is about this unreasonable plan. my hope is that he will call the neurosurgeon himself, apprise him of my instability and offer an opinion regarding the impact of this plan on my already compromised mental status.

    another route would be to call the other big neurosurgical group in my city. if my insurance will not pay for a second consult, i can pay out of pocket initially. then, the surgical costs would be picked up by insurance.

    i need to find out whether the are willing to work with my current dose, and assure me of adequate post-op pain coverage. not really sure how to do this. i need to be connected with another office before i choose to stop association with my neurosurgeon, as i don't want to violate my agreement not to receive pain meds from anyone else. i will ask to speak with even an NP when i call- explain my situation, and see if they might be willing to work with me.

    my ascent into mania began on january 26th. i think i am on the downslide, where i can expect to become depressed and more hopeless. i have an appointment with my psychiatrist on monday which is two days from now. i am sure he will offer advice as to how to act in this situation.

    i am acutely aware of my limitations right now. i guess the bottom line is that the plan presented to me for pre and post op care is not acceptable. so, i will contact the other neurosurgical office, make an inquiry in depth about their policies, and if they do not require a pre-op patient to detox off their meds, i will get a referral from my neurosurgeon.

    i hit it right off with my neurosurgeon. he trained at the hospital where i worked, and we had a common link. i felt confident i had found the right doctor. i regret this decision must be made, and the notion of going through this process again is frankly exhausting. i am not afraid to admit i feel alone, unsupported and like a failure.

    so, jimhar68... i think you are correct. they are not the only show in town.
  • Having gone through surgery and doing most of the research afterwards, I am just trying to point out the obvious. Item #1 in my first post was a hint. NSAID type medication and bone fusion don't mix. Now that you know what to do, how about telling us exactly what is wrong with your back and what the surgery is expected to accomplish? There are far more wiser folks on this board than myself and they might be able to help you figure that part of it out.
  • I can see your concerns and you are in a difficult position. I agree that perhaps another opinion would be important. I always recommend a 2nd opinion before spinal surgery anyway.
    One thing to note is that it is common for doctors to try to taper your medicines before a surgery. The reason being that you will have immediate post op pain, and if you are already on high doses, there isn't much they can do to help you at the hospital. I personally don't know if your medications are at the level to be concerned about that, but I do know it happens sometimes. I have had this conversation with my doctor before where he was happy with the amount of meds I take because he didn't have to taper me before surgery. So my point is that there could be a medical reason for the taper. Now as for only giving you pain meds for 3 weeks post op, I'm wondering what kind of surgery you are having. A lot of surgeons will manage your pain for a few weeks and then send you to a pain management doctor, but it sounds like this is your pain doctor telling you this.
    Like was stated above, give us more information and perhaps someone with experience with your same issues will have more information.
    My best advice is to try to stay calm through it all. Anger doesn't solve anything. Good luck.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • airborne72airborne72 Posts: 245
    edited 02/03/2013 - 4:36 AM

    I can share my experience. Two years ago I underwent a 2 level lumbar fusion. Prior to surgery I had never taken any narcotic pain medication. Immediately after the surgery while laying in the hospital I only hit the pain pump 5 times in two days. Once it was disconnected I was prescribed lortabs (10/325) and they did not even come close to touching the pain. My surgeon then prescribed percocet (10/325) and that did the job.

    When that 30 day supply was consumed my refill was percocet (5/325) and remained so for about 10 months. However, my pain persisted and increased. Consequently, my surgeon increased the percocet to 10/325. That is what I have been taking for the past 14 months and it works. I am prescribed 3 per day and I have never exceeded that amount.

    Last Thursday my surgeon finally saw evidence of a loose screw and he told me that my superman, stoic, procrastinating approach to exploratory surgery and revision fusion was no longer necessary. I felt validated because I have been in pain (gradually increasing) ever since two months after my surgery.

    So what does this have to do with pain meds? Well, my wife was in the exam room and she told the surgeon that she did not think that my meds were working because I also seem to be moaning, grimacing and changing physical position seeking comfort. He said NO to increasing pain meds because it would make pain management more difficult after surgery since my body would have a tolerance. It made sense to me and what I will discuss with him at my next appointment will be a glide path of tapering my narcotic meds immediately prior to the surgery. What happens on the other side is merely speculation, but I want to do all that I can now to ensure a positive and painless-as-possible outcome.

  • bassetmommybbassetmommy Posts: 50
    edited 02/03/2013 - 8:38 AM
    my current dose is oxycodone 10 mg. 3X/ day. the tablets are too small, and unable to be broken in half. so, when i get down to 10 mg. (i am at 20 now...), i can't be expected to go from 10 mg. to 0.

    i will approach the pain mgmt. doc. and show her how many i have left. she could give me the equivalent in percocet 5/325 which are scored, and can be broken down to quarters. i would like to stay at 20 mg/ day for a few days, then go to 15/ day for a few days, to 10 for a few days, and slowly go to 7.5- 5-2.5. no one should drop from 10 mg. to 0.

    why wasn't she willing to offer a scored pill to me? she knew my pills couldn't be broken.

    my plan is to restart medical marijuana, like i did in california. it helped with the pain, and with my mood. at three weeks post-op, all meds stop. period. i have to stay w/ the neurosurgeon, as the recuperation is up to a year in duration.

    i see my psychiatrist MD tomorrow. he knows nothing of this situation.

    i have been under contract w/ a spine clinic in ca., and now w/ the neurosurgeon. i have never diverted from my dosage.

    remember- drug addicts seek a high. chronic pain patients lost that high a long time ago, and use their meds to manage pain, and prevent escalation of pain. i am not an addict, nor a criminal. i admit to tolerance, but made a personal decision to be treated with opioids. this demand for rapid taper without alternatives or a plan has me annoyed. they are supposed to work with you in supervising a taper. no one offered me anything of that sort.
  • bassetmommybbassetmommy Posts: 50
    edited 02/03/2013 - 2:36 PM
    just a few updates:

    i finally got some uninterrupted sleep for two nights. things are clearer, my mood is depressed but no agitation.

    my upcoming surgery is an L4-L5 spinal fusion w/ pedicle screws and facet revision. my diagnosis is spondylolisthesis, which is a slippage of the L4 disc down onto L5 and the nerve. neurosurgeon says it's the only answer.

    i started Lyrica last night, and tramadol 50 today. the tramadol is so sedating, i can't keep my eyes open! i plan to first apprise my psychiatrist tomorrow of the whole thing, and if there are no contraindications, i will do the taper. in fact, i've already dropped my oxycodone dose 10 mgm. to 10 mgm. 2X/ day. in order to succeed, my PM doc needs to swap out my remaining oxycodone which are tiny and enteric coated- not able to be split, for a scored pill like percocet. this request is reasonable and necessary, as you can't just drop from 10 mgm. to 0.

    tomorrow is a big day....
  • Daisy22DDaisy22 Posts: 5
    edited 02/03/2013 - 8:52 PM
    Airborne answered why the tapering down. I do believe it is medically necessary as it may interfere with the recovery process. There is no way they will give you NSAID directly after your surgery. I do believe you will have something in the hospital, but then quickly drop you to NSAID...just to see what you can handle. IMO, this would be the only way to tell the true effect of the surgery on your pain level. Does this mean you can't go back to the oxycodone? No, but it's a hope that the surgery is a complete success and you won't have to even take a tramadol or loratab.

    Also, please do the research as jmhar stated just to be sure. After looking myself, I do believe I would question your doctor about it and what exactly he means by it. Not that you want back on the narcotic med, just you are concerned to the possible complication. I found a couple of articles. Print them out:

    2000 - for NSAID http://www.ncbi.nlm.nih.gov/pubmed/11091128

    I DID have some links that were against NSAIDS that were more current than the year 2000 but they were removed by mod. Not sure why the ones that were against were deleted. As I was trying to offer info on both sides, not one sided. Google it. One was a recovery form from a surgical center that said absolutely do NOT take NSAID while recovering. Another from modern medicine. Georgetown University is also against it as well.. Certainly question the doctor on this. There may be misunderstanding on when to begin the NSAID process

    Any how, Good luck! Stay with positive vibes & get plenty of rest your body needs both! I wish you the best!

    Link removed, not permitted
    Post Edited by The Spine-Health Moderator Team

  • If the oxycodone you are currently taking are in fact, only oxycodone and not Oxycontin, then they most certainly can be split with a pill splitter. Even though they are tiny, they can be cut with the splitter.
    The plan for the taper is a good one, reducing the dose for each dose but 1/3 to 1/2 and then staying at that dose for two to three days gives your body time to adjust to the new lower dose, before moving onto the next reduction.
    If she switched you from oxycontin to oxycodone, then she would be well aware that those tablets can be split to accomplish a reduction.
    And as far as NSAIDs goes after a fusion, every surgeon that I have ever talked to says no way to NSAIDs after a fusion surgery, it can inhibit new bone growth so they don't allow it...your neurosurgeon should be managing your post op meds for the first three months usually post op, then returning you to pain management for any ongoing needs after that immediate post op period.
    What the others gave as reasons for trying to reduce the meds now , prior to your surgery is true. It is far easier to reduce your intake now, and then the post op meds that they give you will be far more effective post op then they would be if you continued at your current doses and then they had to try to manage the acute post surgical pain on top of it, although you were at a minimal dose of oxycontin, many surgeons prefer to reduce meds prior to surgery to make the immediate post op pain more manageable.
    You can ask for a muscle relaxer to help and the addition of Lyrica and tramadol may prove to be very helpful in the interim..
    Good luck with your surgery.
  • Make sure you have full disclosure with your PM doc about your plans for MM, even if it's legal in your state, just as you would if you were to begin taking any other supplement. In some pain clinics, it is not allowed to be used concurrently w/ Rx'd opioids. If you feel your PM doc has something personal against you, I suspect she will hold your MM use against you if this is the case.

    I would suggest asking your psychiatrist for a referral to a cognitive behavioral therapy specialist. I share some of the same traits as you, and not only has CBT helped me with crippling anxiety and controlling mania/hypomania, I've found it helpful for pain management as well.

    Good luck, my dear! I'm rooting for you!
    L5-S1 ALIF w/ posterior instrumentation scheduled 2/20/13, wish me luck!
  • It is a myth that a chronic patient needs to be weaned off opioid medicine before an operation. I've discussed this with my own doctors (pain specialists) and there are many sources which point out that it is not only unnecessary, but counter-productive. An opioid-tolerant patient will often require substantially more post-operative analgesia than an opioid-naive patient. Nevertheless, some surgeons still prefer to wean patients off opioids. One neurosurgeon I saw initially told me the same thing, until I showed him the information given to me by my pain management doctors.

    Here is one link (and there are plenty more references that come to the same conclusion): http://www.painedu.org/spotlight.asp?spotlightNumber=71

    It seems that some doctors are now very keen to get their chronic pain patients off any opioid medication, with no other rationale to offer other than 'opioids are addictive' (they can be, but the statistics show that the rate among long-term pain patients is only around 10% or less) or 'opioids only numb the brain' (a lazy way of saying that they alter the way pain is perceived and, regardless, quite beside the point).

    While it is true that eliminating pain is not the goal of chronic pain management, that doesn't mean that reducing it as much as possible shouldn't be a priority, along with improving function and quality of life. Of course opioids are only part of the overall treatment plan, and may not be necessary in every case, but they are nonetheless essential to a lot of patients whose life would be severely limited without them.
  • bassetmommybbassetmommy Posts: 50
    edited 02/04/2013 - 7:19 AM
    thank you huggy, for the validating link and information provided.

    in attempting to research this plan proposed to me, i came across an article published in "orthopedics today" which reflected the same plan put forth to me by pain management. the rationale of detox from opioids pre-op, and 3 week time-limited post op coverage with opioids in conjunction with muscle relaxers slated to end at the close of week 3 was described as a way to "avoid litigious and med-seeking patients flooding the office with requests for more medication". i just checked, and i am unable to relocate the article.

    i worked collaboratively with my previous provider to find a dosage of meds appropriate for handling my level of pain. the notion that i would be placed in the same category as an addict is ludicrous, given my documented medical issues and history of compliance with honoring and adhering to the rules of my contractual narcotic agreement. my current agreement asks that i not receive narcotics from any other source. i will continue to honor that.

    to miss.vegas, i appreciate your suggestion re: the incorporation of CBT into my longstanding treatment for bipolar. we already work using this model. and regarding the decision to incorporate the use of MM- my contract only addresses obtaining narcotics from alternative sources. i feel it is my personal decision and choice to add MM therapy, and given the fact that there was no mention of drug testing, i will likely not apprise the pain management physician of my decision to utilize MM in pain control. the clear reality is that she made a non-negotiable decision to remove my longstanding opioid medication unilaterally, devoid of any collaboration with me. as my plan for taper post-operatively was declined, i am forced to comply with a demand for cessation of opioid therapy pre-operatively in order to qualify for the spinal fusion by my neurosurgeon. i feel i am forced to provide an alternative method of ensuring some degree of pain relief, and will do so without the blessing of this provider who has offered me no alternative- including alternatives such as massage, biofeedback, acupuncture and the like. in addition, no assistance in developing a guideline for taper was offered to me. the expectation being that i "figure it out and use the tramadol to help" is both clinically unsound and dismissive. given this unsupervised plan presented to me, you might say, "all bets are off". i will use any legal method which i find helpful to help attain an acceptable level of comfort.

    in addition, i have to mention that i have always found the term "elective surgery" frankly laughable. reduced mobility to the level where one cannot perform simple physical tasks like tying their shoes or preparing a meal.... limitations that create an alteration in lifestyle so severe it could be deemed "disabled" create a situation where one is forced to choose surgery or live a life of dependence on others which i find unacceptable. even the neurosurgeon described the spinal fusion as being "the only treatment for this clinical presentation". so yes, i do resent their unwillingness to respect and identify my chronic pain as warranting legitimate pain control, and see this more as a medical necessity rather than "elective" in nature.

    as an RN, the most important thing i used in my practice was the assessment of each patient as an individual. the pain management protocol i am forced to comply with cannot be "enforced" safely in every case. co-morbid issues will change the overall clinical picture and must be considered. after a lengthy period of stability psychiatrically, my untimely decompensation and increase in symptoms had a direct correlation to accepting, and setting a date for surgery. when made aware of this fact, the doctor asked no further questions, and was clearly not including this in determining my ability to execute a taper alone, nor were the possible ramifications of this plan also discussed with my psychiatric provider.

    my appointment with him is today. he knows nothing about the protocol i have been instructed to follow and complete pre-operatively. i leave the determination of his evaluation of this plan and whether he finds it to be clinically sound in his hands. it should be considered that an abrupt opioid detox leaves a patient with increased depression and even psychosis, in some cases. being in the aftermath of a brief, manic episode i am already depressed; i must take it upon myself to ensure that these factors are all being considered, and a safe plan be put into place to avoid further issues.
  • southsider81ssouthsider81 Posts: 6
    edited 02/04/2013 - 8:18 AM
    No offense, but your pain management doc is not doing his/her job then. To say that opiates just "dull your brain" is a statement ment to scare you or to keep you sticking to her plan. There have been studies that indicate that people with severe chronic pain are actually much more able to concentrate/perform/etc. when their pain is managed correctly. This is because when you're in constant pain your brain is constantly firing pain signals which interfere with any other function that your body/brain see's as less important. Therefore, when you introduce opiates, which slow down the firing of these pain signals and communication between your brain and nerves, you allow yourself to focus on other things other than your pain.

    I can't say I am any expert, but I've went through the process of finding a doctor that will listen, keep your needs in mind, and try to find a happy medium between being overprescribed pain meds and being in constant arduous pain. There's 3 types of doctors I've delt with so far 1) The doc that is more worried about "addiction", their own butts, and believe you may be lying about the severity. 2) The doc that just gives you pain meds and sends you on your way 3) The doc that listens, builds trust with you, and helps you live a fairly normal life until you can get to the root cause of your pain and hopefully get rid of it with a combination of meds/therapy/lifestyle choices. I understand how frustrating it can be to have one of the first two kinds.

    I have a great relationship with my Pain Doc , though it wasn't that way from the beginning. Since my main condition hasn't been diagnosed yet conclusively she has to trust me to a degree. I also have to trust that she has my best interests in mind, not just the short term and not just the long term but both. I suggest bringing in a family member or spouse even if it's just to let them know that that person sees you a lot and can vouch that you are taking your meds as prescribed, and the degree that pain has on your life. My mom coming with me helped immensely. Also, finding a doc that has an opioid contract w/ drug tests is good to build trust. I've never failed a drug test and that has helped as well. Finally, try to be nice to the office staff even though they may be horrible people. Kiss their butt if you have to, otherwise if that doesn't work talk to the office manager. These people control when/if/content of the messages you may leave for doc and may see you as a pest. Others, like the staff I now deal with, are great and very helpful. Just make sure to voice your concerns right away if your meds aren't cutting it, especially before you take any action on your own. A lot of doctors are willing to change your dosage as long as you can return the unused previous rx.

    As far as I've found, if your unhappy with your care, it's your life not theirs. So don't be afraid of finding a new doc. When/If you do I never tell them I've seen previous pain docs If I don't need to, some docs won't even see you if you've had a pain doc in the past. Make sure to be prepared for your appointment. Check this out my girl gave it to me. Last thing.... I show up with a pen and notebook and break it down by writing down sections including: What I want to talk about/cover, Symptoms/Symptom changes, Questions, Goals, and expectations. Try to put the most important on top and don't let your doc short change you. Good luck and read this.

    6 Things to Get my Doctor to Listen

    Tip #1:
    -Answer the doctor's pressing questions first. Many doctors are so accustomed to relying on a checklist of questions that they have to get these answers before they move on. Help them out and answer these questions.
    -If the doctor wants you to describe the location of your chest pain, describe it. ("It's in the middle of my chest, right here.")
    -If she wants to know what you took to make it better, tell her. ("I took an aspirin. It didn't help.")

    Tip #2:
    -Attach a narrative response at the end of these close-ended questions.

    -If your doctor persists on asking close-ended questions, add a narrative response at the end that may not so easily fit into a yes/no answer. ("It's in the middle of my chest, right here, and it started after I really pushed myself in swimming tonight.")

    -Pretend that you are being asked "how" or "why" instead of "yes/no," and add your own response.
    -Look to make sure your doctor registers this answer --
    -does he ask you more questions to follow up on what you said, for example?

    Tip #3:
    -Ask your own questions.
    -If you don't understand why a particular question is relevant to your situation, ask about it. You may be surprised to find that the doctor herself isn't sure and is only asking the question out of habit.
    -On the other hand, you may find out that issues you wouldn't have thought were related might actually be very important to discuss.

    Tip #4:
    -Interrupt when interrupted.
    -If your doctor cuts you off when you try to explain your full answer, feel free to interrupt.

    -Pretend you're having a conversation, even when it feels like you're being interrogated.

    -For example, if you're asked, "When did headache start?" rather than responding "10 a.m.," go ahead and tell your story of how the pain started: "I woke up this morning and I was fine, then I started walking to work and the pain came on suddenly like a lightening bolt striking me."

    -This is not a new tactic; lawyers will often coach clients in advance to answer yes/no questions with a narrative so that answers can't be taken out of context. Interrupting is a way to ensure that your entire answer is heard, not just the part that the doctor thinks he wants to hear.

    Tip #5:
    Focus on your concerns. If you get the sense that your concerns are being brushed over, interject, "Excuse me, doctor, I have tried to answer all your questions, but I am still not certain my concerns have been addressed. Can you please help me understand why it is that I have been feeling fatigued and short of breath for the last two weeks?" and so on. You can take charge of the conversation at that point. It's your body and your duty to advocate for yourself if you don't feel like your story has been understood and your concerns have been addressed.

    Tip #6: Make sure you are courteous and respectful to your doctor. Your doctor is a professional, and is probably trying her best to help you. Your story has to be heard and your concerns addressed, but make sure you present your points in a respectful manner. This will ensure that a solid doctor-patient relationship is present, which is critical to the partnership you need to establish.
  • southsider81ssouthsider81 Posts: 6
    edited 02/04/2013 - 8:30 AM
    I forgot to mention something....... Your doctor will always be apprehensive to rx short acting opioids bc they are more addictive than the longer acting ones. I went through almost every opioid pill you can and found that the Fentanyl patch is much more effective. I told my doctor that not having to take a pill every so often helps keep my mind off trying to control my pain several times a day. Also, I told them that I just want something that has less side effects. Fentanyl doesn't cause the gastrointestinal side effects as bad as most other oral pills do bc they go in through your skin. Also, NSAIDS hurt my stomach after awhile. FInally, fentanyl patches do not act on histamine nor has the anti-cholinergic effects as others. Fentanyl mostly acts on your mu receptors which also help aid in avoiding addiction. The main reason your doctor won't want you to be on opiates is because you're having surgery and they want to see if you can function without them bc people with acute pain shouldn't be on long acting opioids supposedly. It all depends on your case though. I can say that now being on the Fentanyl patch my pain is able to be controlled better. I still have bad days but they're immensely more tolerable than when on oral opioids. Good luck and I hope all the best. Make sure to do your homework before every appointment so you're one step ahead of them. Sometimes you have to have a better argument than they do, within reason, and so you need to educate yourself. Keep a journal too and checkout the american pain society's site for a lot of info.
  • dilaurodilauro ConnecticutPosts: 9,877
    edited 02/04/2013 - 6:42 PM
    As I have posted before and in my PM, almost everything you posted focuses in on pain and what type of pain medication (narcotics, or anything else) you want.
    This is NOT the way that pain management or other doctors associated with chronic pain patients would recommend.
    Look at our FAQ, one item called THE BLEND is something that you need to read. "Numbing your brain" with higher dosages of narcotics or the use of medical marijuana is not the answer. Those alone, will as you stated numb your brain. So, yes, you will not feel any pain, but you would't be good for much else.

    A total pain control plan, including physical therapy, aqua therapy , TENS , Ultrasound, Massage Therapy, Traction , Injections plus other conservative treatments is what is needed to really manage your pain. I dont think you want just
    to have your brain numbed, but instead be able to go day by day without high levels of uncontrollable pain.

    That to me, is where you should be spending your energy.,
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • tkank you, southsider, for some excellent tips, reminders and information.

    my initial interaction was overshadowed by a prolonged episode of bipolar decompensation. i had just come from the psychiatrist and when i was presented with the plan, i lost it and became tearful. at no time was i disrespectful, and apologized for my inability to modulate more than once.

    today i apprised my psychiatrist of the PM plan. we discussed it, and he told me he felt the safest place to be while detoxing for ME, given my co-morbid psych illness would be to do it as an inpatient. he suggested suboxone tx. under supervision. he then called the PM doc to explain that i had been experiencing a mixed episode. he said he understood the need for the plan, but didn't think i could currently manage such a plan without close supervision/ observation to prevent further exacerbation of my mood instability. he asked for suggestions for referrals to an input. setting.

    the PM then decided I could remain on my current dose pre-op. we both assumed i would get a call directly from the PM doc. i left my office visit, and the front desk staff from the PM's office called. she said, "your psychiatrist spoke with dr. "X", and said you will be going to inpatient treatment post-op. you are to stop the tramadol, and continue your dose of oxycodone. you can pick the prescription up now". i said i had 30 pills remanding and did not need the prescription right away. i told her i would come tomorrow, and asked about the Lyrica. "i don't know about the Lyrica... this is what she said".

    i can only assume it's OK to continue the Lyrica. frankly, a phone call from the front desk was not what i had expected. speaking directly w/ the PM doc, i may have been able to discuss the immediate post-op pain plan, and see when i would be allowed to safely enter a program physically. i think a simple 5 minute phone call w/ the PM directly would have been more clinically appropriate.

    i am a registered psych RN who has never required input. stabilization. my psychiatrist contacting her was completely appropriate. i am still struggling with a situation where there is a lack of collaboration, as i am unaware of what to expect post-op.

    personally, i expect not to be receiving any suggestions for treatment facilities. i have begun researching myself, and expect to be healed enough after my 3 week visit. i have endured this fiasco for one reason- the chance to be operated on by my neurosurgeon. if i don't find out what my plan for pain coverage will be until the date of surgery, i know he will discuss it w/ me in brief that day.

    i will cancel my MM appt., as the change in plan will hopefully meet my needs for pain coverage. re: delivery methods above: i have never used a patch, but used oxycontin before i dropped to oxycodone. it was much more effective, providing long acting coverage with no lapses and increases in pain levels.

    i don't want to remain on meds. i want a successful surgical outcome w/ a decrease in pain and an increase in mobility. i hope i am not living in a dream world...
  • i have been very upset at the total lack of collaboration in Arizona regarding pain management. i missed your last post, but it suggested i read "the blend". i am guessing it is something like a "brompton's cocktail" which i administered many years ago in the hospital.

    you keep at me for what you perceive as my being completely focused on narcotics. allow me to clarify...

    i am most concerned at the possible notion of being under medicated 3 weeks after a fusion. this is a likely possibility. i have been made aware that all analgesia and smooth muscle relaxers will cease on 3/28. after having 6 surgeries, even a hysterectomy requires a prn at 6 weeks. you may have seen my realistic percentages for mobility and decrease in pain. i clearly said that a current 20 % to go to 50 % would be a nice thing. i may still require a low dose of opioid pen. i also said my plan would be to use suboxone to get off my current dose of narcotics. and di lauro... that total dose is oxycodone 30 mg/ day. not a huge opiate mountain to climb down.

    the alternate therapies sound divine. my OR date is in 6 days, though. don't think i'll be in the pool for awhile.

    i do not present to the boards for toxic reasons. i want coverage post-op for approx. 6 weeks. if my assigned PM will not agree, my appt. is monday with the new one. i will not sign anything- merely talk with them to familiarize myself with their protocol. the last thing i said was that my dream was to be off meds.

    kindly don't take my posts and use them out of context. i'll tell you this, though... i refuse to spend the rest of my life grinding my teeth in pain. it's unnecessary and barbaric. if i have to work with another rehab group- so be it.

    i was approved for MM, but it may be on hold due to agreements. i work hard in therapy. some things are not negotiable. on date of discharge, if I am unable to walk to the nursing office- it's another night in the hospital bed. my history includes a fall from a walker while alone in the apartment on post-op day 2
    my fears are allayed. i won't be obsessive. it is what it is. kindly consider more the psychiatric, as well. so respectfully i ask you to focus on someone else who takes oxy, fentanyl, percocet and a pump to consider a plan and a suboxone-like drug. when the time comes.

    but for some the time never comes. never share any medicine with anyone at all.

    respectfully, bassetmommy
  • dilaurodilauro ConnecticutPosts: 9,877
    edited 03/01/2013 - 1:59 AM
    I apologize.

    I just read what you wrote, very simple.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • terror8396tterror8396 Posts: 1,831
    edited 03/01/2013 - 8:19 AM
    as i have read over the years on this site, there is one topic that seems to come up over and over and over again, disatifaction with one's pain dr or drs. the common complaint is that i am in pain and my dr won't treat me effectively, which seems to mean, i need more pain pills. i think a lot of pin drs see an undercurrent attitude from patients that they see as wanting narcotics. i don't know what it is or why drs see this, but obviously there must be something in a person's psyche that puts drs off. maybe it is coming in stating that i am in pain and i can't sleep or whatever. i am lucky or whatever because i never had issues with pain drs. i have been on narcotics for 10+ years and go in and see mine every 2 months. he knows my history and has records of all of my surgeries, procedures, tests etc, i go back to my mantra, have all tests you can have, have a record of issues and problems and take them with you. the more the merrier. don't go in and whine and complain, don't make it seem like you are in for meds. one more thing all of the people who seem to have issues seem to always say, i don't take narcotics to get high, i am not a drug addict, i don't dr shop. the more people say this seems to indicate to me that you want narcotics. i don't know if lucky is the correct word about having no issue with pain meds and one more thing some say who have issues with pain drs, i wish i was not on them and i don't like taking them. just my 2 cents about reading years about these problems. when i do, there seems to be a common thread and maybe that is why people have problems with pain drs.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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