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Risky Subject--Here it Goes...

HopeforChuckHHopeforChuck Posts: 166
edited 06/11/2012 - 8:26 AM in Back Surgery and Neck Surgery
I have questions about Oxycontin and the pain med routine....I know this is a touchy issue...but here it goes.

I was on heavy duty pain meds for a couple years before having the fusion. I consider heavy duty to be Oxycontin and up. Well, I was on Oxycontin 20 mg twice a day, plus Vicodin, with no real controls in place (if I needed another I'd take another, not writing it down, no one else really knowing what I was taking with a doc more then willing to fill the prescription at will, etc).

Since the spinal fusion--7 weeks ago--I have continued with the Oxy 20mg, plus now Dilaudid (new) for break-through at 4 mg, then up to 8 mg, a couple times a day. The past week, I have stopped the Dilaudid by weaning down, with no real issues except more pain (but then again, today, I feel the best I've felt....hmmmm).

Now, I am on the Oxy 20mg plus Vicodin 750 for break through. I am nowhere nearly healed or even ready to say my fusion was a success. I am still in pain--both in the leg and back--but it is bearable with the meds. It has gotten better every week, besides a major set back just last week--ended up in the hospital 3 days with blood clots...long story. But I'm back towards recovery now.

I've been told by the surgeon's PA (I have grown to trust this girl) that my case was hard because I came to them already on heavy hitters. She said that easily THE hardest part of my recovery would be coming off the pain meds (she said this a month before I had the fusion). Not because of the withdrawl, although that would be an issue. But because I would perceive pain differently for many months. I would not be producing the endorphins to fight the pain naturally--my body would cry out for the meds to fight pain that normal people would fight off without pain meds. She said there have been studies showing that those on the heavy hitters perceive pain up to 30 times more then those not on pain meds.

So then...If it is true that I am perceiving pain 30 times greater (or even 5 times greater) then others who would have the same pain, then I need to get off the meds ASAP and pain meds are really quite the potential problem both pre and post surgery. It also makes me question whether or not the meds talked me into this whole thing. Is it REALLY true that the meds mess up your pain sensors THAT MUCH? I just can't wrap my brain around that. Here's bad Chuck talking: My pain is my pain--regardless of the pain meds I'm on--my back has been stretched apart, they have drilled into my back, messed with my nerves, so I'm going to be in pain if I don't take the pain meds. Right? OR--is it true that, as my family is telling me (who aren't on drugs), that the first few weeks off the pain meds I will perceive that I have this terrible pain, but eventually it will wane because the natural endorphins will be built back up and then start acting once again as the pain meds used to?

Any thoughts on this? Why wouldn't those of us who are 6-8 weeks out of surgery, with a level 4-5 pain during the day and on the pain meds, just wean off, bear with it for a few weeks while it spikes to a 6-7 level while the meds go out of our system and the endorphins start coming back, and then enjoy it when it comes back down to a bearable 2-3, but without the pain meds?? Man was that a long sentence.

Sorry guys--I'm a writer--I wrote a 400 page doctoral diss--one night I wrote 40 pages. So, I'll stop. I really want to get off these pain meds more then ever.



  • Is try it. That is all I know to tell you. Just try to come off of them and see how it feels. Take it down, little by little til you are off of them. If you are in extreme pain, and you can't stop it with other things like ice and breathing and tens and whathaveyou, then go back to the meds.

    I have a VERY high tolerance for medications and alcohol. Always have. I woke from my surgery screaming and thrashing in agony as I was not given enough meds during. I was given 6 intraveneous pain killers in about 3.5 hours, including ketamine, all of which were unable to bring my pain level to a tolerable place. It took two days to bring my pain down so that I could rest.

    I left the hospital on dilaudid. After a few weeks, I stopped taking it altogether. I now have percs, and I take them if I have to. Usually one or two in the late afternoon evening.

    My point, although a bit long winded, is that everyone is different. Give it a go and if it works for you to be off of them, YAYAY! If not, don't beat yourself up.

    One Love,

  • Chuck - my hubby was on much higher doses of Oxyxontin than you pre-surgery (for several years). It has been a long tough road for him but he is now down well below the pre-surgery levels and hopefully on his way to no narcotics. Each step down has been difficult until his body begins to accomodate. Each drop in oxycontin has been accompanied by a short term increase in break-through pain meds and then he slowly weans down on the break through meds. He tries to stay at each and lower oxycontin plateau for a few weeks and then he has taken a step lower again. It has been a long process (9 months since L2-L5 revision fusion)with a few set-backs but his PM doc has thought it best to tackle it slowly. Watching the process and living it as a care giver, I know it can seem impossible but stick with it and know that you will think so much more clearly once you get to lower doses or get the drugs out of your system. Best of luck. Terri
  • Chuck,
    My ortho said the same thing about the endorphins. He said to wean off the pain meds and gradually increase physical activity since this will naturally release the endorphines. This was working good for a couple of weeks and I was down to 2-3 vicoprofen per day as opposed to 4-6 per day. Then I fell down my steps outside and hurt my ankle, knee and of course back. I am trying to wean down again and do this all over again. I too have a high tolerance to meds, alcohol etc so it does take more than the usual to touch my pain. Lately, the vicoprofen isn't touching the pain and I've been taking up to 6 or more per day again, which means i will run out sooner than I am supposed to and pain mgmt doc said I should try oxycontin, pain patches or something else (can't remember). I am scared to death to go on something stronger but would like something longer lasting like extended release where I only have to take 1 per day but not be all doped up. I just want to be able to feel good enough pain wise to go to work without being all doped up.

    I totally know where you are coming from Chuck. I would love to wean off the meds but I don't want to hurt so bad I am stuck doing nothing again. I can't do much but I can do somethings that I wouldn't be able to do if pain was 7 or higher all the time. I am at about 4-5 all the time on meds today is 6 sometimes spiking to 7 because I over did it last night.

    Happy New Year!
  • Everything you said makes sense to me. Prior to my surgery I had never taken anything but an asprin or tylenol. When the surgeon looked at my MRI he could not believe it, he said I was a 9-10 on a scale of 1-10 of bad necks. I had become so use to the pain in the neck, felt like a bad crick to me. It was the arm pain that sent me to the doctor, never knew it was my neck. After surgery he told me it was far worst than the MRI showed, guess I am lucky. I have always had a high tolerence for pain, give birth twice all natural, no epidurals. After the first cervical spine surgery I really felt great, did not need any pain meds but the first few days and that was from the incision in the hip where they took bone. Now my second surgery which was a revision surgery was a different story, they sent me home with 10mg lortab and I was screaming in agony. The revision was done posterior and I had no idea that nerve pain was a whole different pain, narcotics will not touch it. That was my first real experience with any bad pain in my life and never want that feeling again. It took weeks of neurontin and finally lyrica to get a dose that eased that pain up. That will be 2 years this Feb and I still take the neurontin and probably always will.

  • Hello Chuck,

    Risky subject? No, I don't think so. In fact I'd say it is an EXCELLENT subject.

    I have not been on the "heavy hitters", just Vicodin. And no surgery at this point in time.

    Okay, my story (if you haven't read it before on another topic).

    When my lower back pain started to extend down my right leg, and I had a tingling sensation in the lower part of my leg I knew it was time to see a spinal surgeon. (Pain level about 4 not more than 5.) I did some research into spinal surgeons in my area. I saw the spinal surgeon at the top of my list. After his exam and x-rays he put me on Vicodin to at least reduce my pain short term.

    Chuck, I was on Vicodin for only two weeks and I KNEW I had to get myself off of that pain med. I was literally sleeping my days away. There was NO WAY I wanted to spend the rest of my life in that state even if the pain was somewhat less.

    It took me about 10 days to slowly get off of Vicodin, and another 2 weeks to be free of the withdrawal symptoms. Best thing I ever did. And how was the pain after I was off of Vicodin, certainly no worse than before and at least I could feel like myself again.

    For me Chuck, I'm going to stay off of pain meds as long as I can. And if someday I have surgery, and will need pain meds, then I will get myself off of those horrid pills as soon as I can. Currently ESIs keep the pain down at about 1-2.

    A side note = Chuck, there is a wonderful lady in the UK who has SEVERE, I mean REALY SEVERE back pain. Being under the NHS in the UK she can't even get to see a specialist without having to go through a review panel. She has tried so many times. So how does she cope? Her PCP just feeds her stronger and stronger pain meds. The last I heard she was on a lot of morphine, etc. Amazingly, she has still retained that fantastic sense of British humor. Oh, and don't ever refer to God as HE. She let me know early on that it is MRS. God.

    There is a SUPERB spinal surgeon in the UK not far from where the lady lives. If it wasn't for the "pond" that separates us I would have seen him months ago. He is highly respected by his peers. Would you believe the NHS won't even approve for her to at least have an appointment with MR. K. Sad Oh yes don't ever call a surgeon or other medical person "Dr. in the UK. The respected "title" is "Mr.".

    Okay enough of my rambling.

    Forty pages in one night. WOW

    Chuck, my thoughts and prayers are and will be with you. Mrs. God and I chat quite often. :)

    May 2009 be all that you hope it will be. Your faith will see you through this difficult time.


  • Chuck, I feel you pain and agony over your ordeal. I am 6 weeks out of 360 fusion with hardwear and ADR. I was on pain meds for years prior to surgery and let me tell you it was horrible during the drug detox. I tried to lower the dosage to make stopping manageneable but that was not working so I did something dumb, cold turkey. I paid the price and was a wreck for at least a week. I am off narcotics completely as I feel great. No back pain, front pain, just minor nerve issue in the left leg/top of foot.
    There are medications to help come off narcotics but I am not sure if you could/should take them because of the Coumadin. Talk to your doctor when you are ready because rest assured, your brain will not be happy when you cut out meds too much too quick. Best Wishes to all.
  • Something that I was fortunate enough to get, was Auricular Acupuncture. It is awesome and helped to kick the natural endorphins in as well as helped me get some sleep.

    Prior to surgery I was on 30mgs of Oxycodone an hour. 2 days prior to that, I was on Oxycontin and Oxycodone and Percocet. The doc took me off the Oxycontin and Percocet and adjusted the Oxycodone to the equivalent. Anyway, I went through UROD Ultra Rapid Opioid Detox under general anesthesia. My natural endorphins had been long gone due to the high level of opioids I'd been on for so long.

    The Acupuncture was started 2 weeks after the rapid detox and continued for several months. The natural endorphins started to kick in about a month into it. Just being able to sleep after the first two treatments, was a blessing.

    I'm not sure what your Pain Clinic has available, but I would never have been able to bounce back after all those opioids trashing my systems for so long, had it not been for the acupuncture being a part of the detox protocol.

    I also started exercising by riding a stationary bike, walking and using light weights on the machines at the gym. The combination of everything was awesome!

  • This is an excellent question and what you proposed makes sense. In my case, I'm 7.5 months out of my fusion and the pain is still rampant as ever. I was on Fentanyl before my surgery, and still continue to take it, along with the other meds listed below. I haven't made any progress with either surgeries I had, and I'm waiting to see what my diagnosis will be later on. If you are able to come off your meds and have your body produce endorphins, then I will be really happy for you. I know you have the mental fortitude to do whatever you put your mind to, and I hope you'll be able to have a complete recovery.
  • I am doing really well 6 weeks post op. Early signs of fusion, etc. But I am 56 and am used to being on aspirin and advil for my neck, knee and shoulder pain for years (arthritis). So now, I can't take ANY of these as they will interfere with fusion. So I am down to 30 mgs of oxy a day and the oxy includes tylenol at 500 per so that would be 30 mgs oxy and 1500 mgs tylenol. I have been diligent about cutting down the oxy. Was on 70 mgs a day 6 weeks ago. My plan is to keep cutting down until I get to the point that I only medicate when I really need it. But without the use of iboprofen or aspirin, I am willing to keep oxy in my life for awhile while I fuse. I guess if I were younger and had fewer "war scars" to deal with, I might feel differently. The closest acupuncturist is 50 miles away so that isn't an option. Maybe it's my generation - (better living thru drugs) but I'm happy to reduce yet unwilling to totally leave all pain meds.

    On the same subject, can't wait to get the good ole regime of ibuprofen. Tylenol has NEVER done anything for me. I don't think it will be that hard for me to keep reducing the oxy - but I am really cautious which is why I keep cutting back.

    I'd love to hear other opinions on this subject. It is really productive!
  • suffer from permanent nerve damage, and the heavy hitters do nothing but numb my mind. Until I get the permanent SCS, though, I have no choice. As it is, I live in a recliner 23 hours a day and on a good day, my pain is a 5 out of 10, on the meds I take.

    I just went through hell in the hospital, and after what I just experienced, I WILL be getting off all meds. I was taken to the ER in severe pain and NO ONE listened to me when I told them the meds I was already on. (Oxycontin 30 mg 2 X a day and Percocet 10/325 2X a day for breakthrough, and I was at 2 a day.) From the ER, I was admitted for acute pancreatitis and only given Dilaudid. NO ONE continued my regular meds. (I found out my family physician did not have privileges at the hospital I was at, so I was assigned to a very old-school family doc who was anti-narcotics.)

    They couldn't figure out what was wrong with me, and tried to send me for tests where I had to lay still for an hour. I was beyond hysterical, begging for help, yelling that I deserved pain control, I deserve pain control. I refused the test and there are over 20 people who saw me writhing and begging and hysterical. I did not know then to yell "I'm Opioid -Tolerant". That apparently would have been a phrase that would have garnered some attention.

    Anyway, I was thrown into withdrawal, in the middle of acute pancreatitis and subsequent gallbladder removal. I am on record calling my pain clinic hysterically and my family physician hysterically for help. They told me they could not override that doctor. We finally dialed the number you see on the bulletin board that says "Code H - if any part of your care is being ignored". I had the nurse manager in my room in seconds, my blood pressure was 160/something, I was writhing and hysterical. The doctor finally showed up and said "I don't know what to do for you, you shouldn't be on all these meds, I will have to go figure something out." And for the rest of the week, they gave me potassium boluses every day. I asked one of the blood girls "what causes low potassium" and she said "Heart stress, damage". I think my heart was over-stressed during that withdrawal experienced. My 2nd hospitalization 3 days later, no more low potassium.

    Every time I saw him, he lectured me on narcotics. I repeatedly told him "That's why I'm getting the SCS, that's why I'm getting the SCS", but he didn't know what that was and didn't care. It was hell on earth. his horrible doc finally put me on a Fentanyl patch, 12.5 mcg, because he REFUSED to give my regular meds.

    Trust me, I've taken notes and am going to a lawyer.

    So, had I not been opioid tolerant, this would not have happened to me. The Dilaudid they gave me WOULD have helped my pain and probably knocked me out. But instead, it didn't do anything. I now have some sort of PTSD (post traumatic stress disorder), truly. The deep gut crying has ceased, but I'm mentally damaged at this point, I know. I'll be getting some counseling ASAP.

    Unfortunately, within 3 days of coming home, I was put back in the hospital for another 5 days (10 days out of 13). (Before I consented, I told the GI doc what happened and with that visit, he assigned an Internal Medicine doc who did nothing BUT handle my pain meds. That's all she was for. It was wonderful.) I had acute pancreatitis again, they ran all kinds of tests (Ct scans, Hida Scans, etc.) and never figured out why. I just got better with "nothing by mouth". But THAT trip, I was given my exact regular meds plus Dilaudid if I needed anything else. At that point, I was just glad to be getting some meds. I also have a very high tolerance to pain and meds as well.

    I'm sure LAWSUIT was written all over my file, because after we had dialed the Code H number, a few hours later a top hospital administrator showed up and played stupid, am I happy, etc. I told him NO, told him what happened, he took copious notes and said he was off to find out why the ER doc sent me to a room without proper pain control.

    PLEASE inform anyone that might be in any position to take you to the ER that you are opioid-tolerant. My poor husband just didn't know what to do at the time. I was begging him for my meds, for a gun, it was horrific. He was scared to give me anything because he thought they'd throw me out for taking meds behind their back. (He's one of those who 100% trusts the medical community, while I am NOT one of those people.)

    I walked out of the hospital the first visit on less meds after acute pancreatitis and gallbladder surgery than when I walked in with permanent S1 nerve damage. It was a NIGHTMARE. And I know a doctor/hospital who are getting sued. You guys honestly have no idea how close you are to hell on earth if you get put in the hospital and people don't listen to you.

    So, anyway......when I was in so much pain, we were concerned because with all my meds, WHY would I feel so much pain? One doc told me there are 2 ways to look at it: One is how I was. But the other is: He finds people in chronic pain and on major meds to feel pain WAY more than the normal person. And the doc struggles to decide what complaints of pain are clinically significant or not.

    In fact, with my 2nd hospitalization and no tests showed leakage, or stones, or anything (but blood results showed acute pancreatitis again), my body was in a major struggle - I couldn't regulate my body temp, I was cold but sweaty for days, etc. It was awful.

    My biggest wish now is for my permanent SCS on Monday (provided my blood results tomorrow are OK and my hives go away - I came home in a major hive outbreak, swelling my eyes shut, they decided I'm allergic to Benadryl. Let's just say my new middle name is TRAINWRECK. lol) Once I have the SCS, I will do whatever I have to to get off these meds so I never have to be tortured again. I just won't trust anyone anymore. And YES, I will be getting counseling!!! I know I need it BAD. It was a hostage situation - I was in too much pain to walk so I couldn't leave, but writhing and screaming and begging for help didn't do anything for me until we dialed that "number". Pain is the 6th vital sign - you MUST be treated for your pain, but it appears that if the hospital thinks you are a drug-seeker, they won't.

    Sigh, sorry for the novel. I hadn't shared here yet, as I just got home from the hospital Monday. I'm doing better and pray that no one has to go through that. I am considering also a Medic bracelet - something to help me out if I were to be unconscious ever, etc. Something the docs would trust since they didn't trust my mouth, my story, my rendition - I was at the ER with no proof, other than my pain meds.


  • Hi chuck,

    I didnt know what Oxy was until after my lumbar fusion I had Isthmic spondylolisthesis that I lived with for ten years. I never really took much pain medicine, apart from celebrex

    It is an amazing drug. I could feel it wearing off and the shear releif from a new dose.

    With OXY I was very aware and could also feel its other side effects with clarity. My mood was affected, and my entire system, including bowels were thrown out of wack.
    I was on them for around eight to ten weeks and I would not have coped without them but, because of the side effects I wanted to get off them.
    After only that ammount of time I could sense my addiction.
    Coming off them I felt like an addict, with massive mood swings ang depression, tears and suicidal thoughts.

    I took other strong pain meds like Tramadol which is also an opiate and then swithched to high strenghth paracetamol.

    Its now six months since my fusion and I have no real pain.
    The occasional ache and twinge but I feel like its fixed.
    Im off restrictions and working on tight hamstrings with the Physio.

    My advise is get off em and take another med. It will be hell after the amount of time youve been on them so dont do it to soon, but cut them out slowly for sure!

    All the best man!


  • That is such a terrible situation you had to live through. Words are not suitable for your situation. That doc and hospital that would not give you the meds you needed and had been prescribed should suffer. You were very smart to call the number and report your problem. I hope all your current health issues are over and you can get back to your life.
    Thank you for letting us know the words "opioid tolerant". I will talk to my doctor that precribed my meds. It is something we all should know about if we are taking these types of medicine.
    I hope you get to couseling as soon as you are up to it.
    It is scary that the doc treating you would not contact your doctor that prescribed the medicine if he did not believe you. I am not one to sue, but if I was in your place I would too. That doctor that withheld your meds needs to find another line of work. I'm glad you have good notes if it comes to a formal hearing, your notes will be invaluable.
    At times it helps when someone in charge responds knowing they had a problem, but letting us know that it is now resolved and no one else will suffer. Not just on a fact finding mission, did the Hospital Official come back to check on you?
    I hope you have an uneventful, happy and healthy 2009. Thanks for posting.

  • These are AWESOME posts. There is so much here, I'm pretty tired, but here are some random thoughts.

    I cut back to one Oxy 20 mg today and I felt a HUGE difference. It was hard, but I pushed through. I feel like a fog is being lifted from my brain--now, I needed something at 6:00pm--but it was because of the pain, not because I wanted a drug. My goal is to work down to break through only, the "as needed" stuff as opposed to the 24/7 stuff--but I think I may try coming off and giving it a few weeks/months even though I will be in pain. It's so hard--this is so hard.

    Cheri, I didn't have the same experience you did but I was afraid I was going to in the ER--that sounds horrible what happened to you--I almost was in your chair. When I went in this past weekend for blood clots and hospital admission--the nurse in the ER intially seemed like they weren't going to give me pain meds--but then my PCP took over, he knows me, and wrote for all my meds basically because I listed them for him. That is a very good point--when you go, unless you sneak in your own meds, they want you to take THEIR pills--if your doc doesn't or can't write the orders, you are in trouble. I'm starting to think that these fusion surgeries shouldn't be performed unless the patient has been off pain meds for several months before--just to be sure the meds aren't heightening the pain levels and thus causing the surgery (unless there are obvious nerve/bladder issues).

    I wrote in my first post that I was afraid the pain meds may have talked me into this surgery: well, they aren't going to talk me OUT of a recovery. I'm done. I want to be off in a few weeks--but if there are flare ups--it will be very difficult. I can see that. I have tried to come off in the past, I can get through the withdrawls--as unpleasant as they are--but the pain brings me back within a couple of weeks--it is so easy to reach for a pill. Now I am learning we are talking months to regain the endorphins, not weeks.

    Also, Cheri, I have one of those old school doc friends. He was with me in the hospital this past weekend. He was deeply concerned about the pain meds. He said they are used rampantly and were never used back in the day. He said that Oxy was designed to be taken by cancer patients who were going to die anyway to keep them comfortable. He said it was a crime that I was on these pre-surgery. Just an opinion.

    Another nurse friend who is brilliant, who also has a husband struggling through cervical fusion recovery (and on more pain meds then me): she reminded me that back/spine issues are a fairly new thing as are all the pain meds being thrown around like candy: isn't it interesting that we see this spike in back surgeries/pain while at the same time seeing a spike in pain meds.

    Keep the posts flowing--this has been SO helpful. I'll try to respond to others later.

  • The only thing I take is Lortab 10/325 2-3 times a day for a total of no more than 30 mgs a day. I haven't had experience with alot of the drugs being mentioned here. I'm not familiar with the term "SCS" and am curious as to what it is.

    I do know that these drugs are addictive. At what point and at what dosages is addiction most likely? I plan on getting down to 20 mg a day pretty quickly. I haven't noticed the fogginess that others refer to. Should I be concerned about that? Kathy in Atlanta

    PS-tragic that you had to go through such hell at the hospital and absolutely inexcusable.
  • SCS stands for Spinal Cord Stimulator, which is a permanently implanted device that send signals to your brain that confuses it so that it doesn't recognize pain signals.

  • Hi Chuck,
    I think you brought up an excellent topic. Medication is a tricky situation. When you mentioned that your nurse had said you would feel pain on a more intense level than the average person it could very well be true. Its hard to say as so many of us have different tolerances to pain, and different types of pain so really is there a scale or average of pain for the entire human race. Not really. This is what I do know about medications. RESEARCH THE HALF LIFE OF YOUR MEDICATION!!!! (if you would like to know more about the half life and how it effects you please pm me) I can not emphasize that enough. I have been on a different type of narcotic for many years to help with sleeping issues, panic disorder and genetic clinical anxiety. I don't have the symptom of "I need this drug I need this drug now!!!" I dont have a mental addiction to the drug but that does not in any way mean that my body has not developed a physical addiction to it. The withdrawl sypmtoms can be miserable on there own account, but I think what your nurse was talking about is "phantom" withdrawl. Let me try to explain that in the way I was told (it makes so much sense).
    Imagine if you had never used your right hand, you casted it and never used it to do one thing in your whole life. Now imagine taking that cast off and trying to use it for the first time. Your brain would have to LEARN everything about that hand. As soon as water hit it, it wouldnt recognize the sensation. Trying to write with your hand, your brain would have to learn how to hold a pencil. It would be ten times harder to use that right hand as opposed to your left hand. Eventually though your brain would right itself and you would gain control of that hand, sensations would feel equal to the left and so on.
    When your getting off medication it has been in a sense your brains crutch to dealing with pain. It doesnt HAVE to work to release the natural endorphines that assist in pain reduction. Once the drug is being removed your brain suddenly has to work to send those endorphines again and its not sure how at first because that part has been well...on vacation. So your going to feel that it is more intense because you dont have the medication and your brain is scrambling to try and get those endorphines going again. It is not so much that you are IN more pain, but that your brain is relearning how to take care of itself with its own natural chemistry.
    Now sometimes that chemistry isnt strong enough and we need the extra help, dont get me wrong. But the possibility that you will feel more intense pain could be like the right hand learning to feel again, or the brain relearning to release endorphines. Its a wierd akward stage and I have been through withdrawl after withdrawl due to trying to find the right mix for me with my panic disorder. Each time my brain had to readjust and I felt my symptoms were worse than they may have actually been. But each time the brain righted itselt, but to make my long story short I am one that needs the medication to help a brain that malfucntions in the sleep and panic category. Genetics!!!
    Please research the half life of your medication, and drop it in fractions. Cold turkey drop is dangerous as you know. I hope that made sense haha, I have what I want to say in my head but sometimes it doesnt register for other people, because I dont explain well enough.
    I knew the effect of the medication and having been through withdrawl before I got off my pain meds at week two post op. I knew what it would be like if I stayed on them too long. Its unfortunate but narcotics are handed out like candy and we are not informed well enough about them, that when the time comes to get off of them we are in what seems like a bigger mess. Please dont take this post as me trying to minimize your pain, I know you have it and its not all brain tricks, its just something to consider as you go through this. I cant tell you how much I understand and would never lessen the feelings you have right now..
    Good luck, God bless
    PM me anytime if you want to know more about half lives of medications and how it relates to dropping dosages, or for anything else :)
  • ...Flexeril since last June (at night before bed) and Vicodin 5/500 when needed since early October.

    After my surgery, I continued taking these (couldn't stand the Dilaudid and Soma) as prescribed.

    Now, I take a Vicodin and a Flexeril together when I start hurting, which could be one time a day or four times a day. I don't think there is a day when I don't take them at all, and I never take more than one Vic or Flex at a time.

    My surgeon says I should expect pain continuing through my PT (which begins in late Jan.) and refills my meds whenever I ask. Do you think I'll have withdrawal issues when it comes time to stop taking these meds? Opinions appreciated.

    This is a very interesting thread.
  • About your pain sensors, does the medication really mess with them. Yes, they really can for most of us. The brain is an amazing thing. Think of this scenerio about how the brain works.
    Your being chased by a dog that is out to kill you, your heart is racing your legs are going as fast as they can, your mind is focused on getting out of this situation, then...you jump a fence to safety. When you jumped the fence you cut your leg. Your adrenaline is rushing you start to catch your breath, your panic subsides because you are now safe and then you bend down to get a sigh of relief and you feel your leg is wet. You notice the cut and suddenly. OUCH!!! Ive cut my leg!!!
    You didnt realize you were hurt because the adrenaline was stronger than the pain sensor. The brain...is amazing.
  • Just a quick update--I will try to respond more later to all these wonderful posts. Somehow, someway, I was able to wean off Dilaudid for breakthrough last weekend with the last dose on Monday. This while in the hospital for blood clots. It was like everything came to a head at once. The Dilaudid is out of the house and the only way I can get to it is by asking my wife who would call whomever has it. I wasn't THAT addicted to it--but we were just scared of this drug. Yesterday, I only took one 20 mg Oxy. Today, haven't taken anything yet--but wanting it badly because of pain. Will probably take it again tonight for pain/weaning.

    I woke up this morning--for the second day in a row, feeling really great considering. I got up and got moving early. We went to the mall to exchange a few things, then we went to the YMCA and joined! It is brand new--state of the art. Just the walking around the joint was probably enough for me, plus the time at the mall, but we got on the treadmills--I lasted 25 minutes walking very slowly. I have walked tons around the house, or so I thought, you don't realize how much you've lost until you actually get on the treadmill and realize you are doing a 20 minute mile as opposed to 6:30's which I was doing just a few years ago. I loved just being around all the active people--it gave me lots of hope.

    Well--I feel like yesterday and today are probably the first days I have felt almost the full fury of the pain from the spine surgery. It hurts.

    I read somewhere that a surgeon told his patient no meds a few weeks after surgery because the surgeon wanted the patient to feel the pain so they would know where the pain was, what kind, just in case there are problems, etc. I can totally see that now. I have this burning pain going down my left leg that I've never truly felt until yesterday and especially today after activity--the L5/S1 root for sure, right into the bottom of the foot--I couldn't have tolerated this pain at what it must have been at 3 or 4 weeks in--can barely stand it at it's level now. I have Lyrica--never started on it--but I may--anyone know how long Lyrica takes to work? Nerve pain is horrible. I feel so badly for people with this--wait a minute, I have it now! Great!

    I can see why people don't get off the pain meds--the pain is a lot to bear when you know you can have releif by taking the pill.


  • First story: A friend of mine--14 years old and pretty frail--wrought with health problems most of his life, but not confined to a wheel chair and as active as possible--recently had his ENTIRE back fused--every vertebrae. The spine was growing into his heart and looked like an "S" on the X-RAY. Scar from neck to bottom. He was sent home with Vicodin as needed for break through and Oxycontin 10 mg every 12 hours. Well, he came off the Oxycontin 2 weeks after the surgery and never asked for a Vicodin. Entire back fused.

    Second story: another friend of mine has a wrestling accident when he was 16 years old. Had to have a fusion. His mom tells me the doctor was from the Marines and gave him NO pain meds after the hospital. He recovered quickly and is fine. No meds sent home after fusion.

    Third story: doc friend who goes on third world medical mission trips reminded me they don't have pain meds in many of these countries.

  • If pain meds are having some effect on the process of fusing. And also makes me greatful for how lucky I am. Thank you for sharing those. Those are amazing stories, and being reminded of how fortunate we are. Keep going strong!
    PS I was off pain meds two weeks post op and was not on any pre op. Youve already made progress in dropping, I know you will succeed. Hang in there.
  • SCS is the spinal cord stimulator.

    I also forgot to add this: When that anti-narcotic family doc put me on the Fentanyl patch for the first time in my life (instead of my regular meds), my pain doc FREAKED when I called her when I got released. She said the patch takes 14 days to reach optimal blood plasma level and NO ONE gives it for post-surgery acute pain, let alone blind switch on someone. That is why it was all so bad - withdrawal and all. Crazy doc. He did NOT know what he was doing, at all.

    Today I had to go to the same hospital for EKG, blood work and chest xray for SCS procedure Monday, and I didn't have an anxiety attack, so I thought that was a plus! lol I think I will be ok, but definitely want some counseling to just make sure.

    Chuck, good luck on weaning. Sounds like you are taking it too fast, so be very careful. You do NOT want the withdrawal to kick in - can cause heart issues for sure. I have another friend also weaning and trying to do it without notifying the doc. I wish you both good luck!

    For me, I had to take my first breakthrough tonight since I left the hospital Monday. I had thought my nerve pain was down from the toxic gallbladder being removed but then I remembered DUH, I'm on prednisone for the hives. That steroid is probably responsible for the decrease in pain due to the anti-inflammatory properties. As I'm finishing the Medrol pack and it is titrating down, less and less steroid, more and more pain. Monday can't get here soon enough and I PRAY that all my test results were fine today. Hives are smaller and smaller and I really think they might be gone by Monday. Crossing fingers and praying!!

    Oh, and NO, the hospital administrator did not come back and talk to me. However, on my 2nd hospitalization 3 days later, everyone from the nurses to the doctors treated me as if my pain were NUMBER ONE priority. I just really can't wait to get my records to see what it says!

  • This thread has been an eye opener. I applaud all who have weaned off narcotics or have not gotten any. Everyone is different; my pain tolerance is low to moderate. I have had 14 surgeries for different things in my life, the last 2 being back surgeries. I never went through withdrawals from all the times I've been on narcotics for surgeries or painful conditions like endometriosis. Back surgery takes the cake for me. It is so intense, more so than 32 hour back labor pains or hysterectomy. I have never had anything else take over my life like this pain, believe me- I have experienced a lot in my 30 odd years. I think the fact that I have an autoimmune disease that likes to attack my body, is one reason maybe I don't heal like I should. I always have inflammation going on, based on blood work. Everything from my heart, lungs, to my joints are affected. I guess what I mean to say is that I truly can't function in my present state without medicine. The pain is non stop and debilitating in my case. Anyone who has overcome this has my respect and admiration.
  • My roommate in the hospital had the same surgery I did by the same doctor... She was on Fentanyl via IV during her hospital stay, and was sent home with the Fentanyl patch. She wasn't on it beforehand, because I was right there when they explained to her how to use it.

    My doctor is VERY good... So your pain management doc probably just has her own opinion. I doubt it's fact, because my roommate was actually put on the patch before she left, and she was fine with her pain, whereas when I first got there she was crying her eyes out.
  • dilaurodilauro ConnecticutPosts: 9,740
    This subject has been touched upon several times in different
    form topics here. Tolerance to pain is a very subjective item. There really isnt any measuring device like using a thermometer to determine if you have a temperature.
    Pain tolerance and Pain levels go hand and hand.
    One person's pain level of 4 is another person's pain level of 9! Based on that, tolerance to pain is difficult to figure out.
    Lets say someone took a hammer and smashed it on your thumb.
    Now that is acute pain, but different people will handle it differently.
    What the overall impact of pain medications is to your body is something you you need to discuss with your doctor.
    I was on Oxycontin for about 2 years, starting at a fairly high dosage and eventually done to none. Today, I get by with Oxycodone IR, Neurontin and Zanaflex.
    I had monthly follow ups with my Pain Management doctor. She is very conservative and does not like to write scripts for pain medications. However, when the pain a person is having is real, she will always take the path to provide pain medications. Together we put a plan for myself to wean off Oxycontin 40mg 3x day down to 10mg 1x week to none.
    It all has to be done slowly and orderly

    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
  • dilaurodilauro ConnecticutPosts: 9,740
    example of what positive attitude, win-win approach and maintaing emotional strength can do.
    Not everyone can take the cold-turkey approach. I wouldn't recommend it or condone it. That is something to discuss with your doctor.
    I know a got back a piece of my mind after eliminating
    oxycontin. (Now back then I had an excuse to forget things, now I have to own up to my short term memory problems!)
    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
  • Ron is right about us all having different pain tolerances and therefore it is hard to compare notes and think that what worked for one patient would work for another. Every doctor has a different view on pain meds. Take mine for example.... after my laminectomy and fusion, and then again after my hardware removal surgery, my surgeon only gave me ultracet/tramadol, which is really quite a lightweight pain killer, compared with Oxy. However, he gave me a strong COX 2 NSAID, even straight after the fusion surgery and I was on it for weeks. Now, NSAIDs after a fusion are normally considered taboo, but his theory was that the very good anti-inflammatory pain killing benefits outweighed the slight risk of the NSAID negatively affecting my bone fusion rate.

    At the end of the day, however, we should be guided by what our own doctor recommends rather than anecdotal stories like mine.

    Chuck, it sounds like you are doing really well now - congrats and keep it up!

    Keep positive!


    ...an old timer here and ex-moderator

  • I'm sure physician's opinions do vary. My first thought is - would Fentanyl by IV be more immediate versus the patch which is long acting, slow release? I was taken cold-turkey off my regular meds and put on the 12.5mcg patch while suffering acute pancreatitis and having just had my gallbladder removed (and while still suffering my incessant nerve pain). Not given Fentanyl by IV. Had I not been opioid-tolerant, I'm sure I would have had more pain relief from even the very low dose patch.

    When I got released from the first hospitalization, I called my pain doc to ask what the heck do I do? That crazy family practice hospital doc told me to stay on the Fentanyl patches until I saw my pain doc next. My pain doc did the meds conversion calculation, told me how much lower that choice was, but told me I could do that or go back to my regular meds, which I opted to do. The important things was that I kept the pain doc apprised of what was going on so I could stay in good standing regarding my pain contract. (Allowed to be treated for pain for other things, such as surgery lol, just have to let them know.)

    This is why I plan to get off meds as much as possible. I want to return to being that person for whom "most meds" work. Were I not getting the spinal cord stimulator, however, there would be no way to do that. The nerve pain is indescribable and completely different than previous back pain, surgery pain after back surgeries, etc.

    The minute I had received my EMG results of permanent S1 nerve damage, all docs treated me differently. They know even meds don't help stop the burning, and unfortunately, I had bad reactions to the nerve meds such as Lyrica, Neurontin and Cymbalta and can't take them. Even the SCS has controversy and some docs are really for it, others really against it and others neutral. For me, the trial was amazing and I hope for similar results with the permanent placement. I believe if I had more or mostly back pain (rather than primarily nerve pain), the SCS would not have been recommended (I had 2 different neurosurgeons in 2 states because we moved in the middle of all this which delayed the overall quest for the SCS.)

    I can't wait until Monday (if it isn't postponed) and will report on how that goes. Getting very excited (and annoyed when I see more hives break out. They need to go away!!) lol
  • I found this on the internet and can't document it's validity but according to this list, aspirin is least "stong" and Levorphanol is "most strong." Accordingly, Hydrocodone (Lortab) is not as strong as Oxycodone (OxyContin, Percocet, Percodan)but I don't think the difference is that marked. I posted this because I get confused by all the brand names being mentioned in this post.

    Morphine IV/IM

    Here are some questions I have for those of you who obviously have much more experience with pain meds than I do. I've been taking Lortab for 6 weeks(now at 30 mg a day, down from 80 or 90 mg a day right after surgery). How likely is it that I have developed an "addicition" at 6 weeks? My plan is to stay on some type of dosage daily, probably wean down to 10 mg Lortab as needed until I am released from the prohibition against NSAIDS at 6 months. Is that being reasonably cautious? Should I still expect withdrawal issues at that rate? This is a wonderful post and really has me reevaluating my pain relief plan. Kathy in Atlanta
  • I found this on the internet and can't document it's validity but according to this list, aspirin is least "stong" and Levorphanol is "most strong." Accordingly, Hydrocodone (Lortab) is not as strong as Oxycodone (OxyContin, Percocet, Percodan)but I don't think the difference is that marked. I posted this because I get confused by all the brand names being mentioned in this post.

    Morphine IV/IM

    Here are some questions I have for those of you who obviously have much more experience with pain meds than I do. I've been taking Lortab for 6 weeks(now at 30 mg a day, down from 80 or 90 mg a day right after surgery). How likely is it that I have developed an "addicition" at 6 weeks? My plan is to stay on some type of dosage daily, probably wean down to 10 mg Lortab as needed until I am released from the prohibition against NSAIDS at 6 months. Is that being reasonably cautious? Should I still expect withdrawal issues at that rate? This is a wonderful post and really has me reevaluating my pain relief plan. Kathy in Atlanta
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