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Risky Subject--Here it Goes...

HopeforChuckHHopeforChuck Posts: 166
edited 06/11/2012 - 7:26 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.

Chuck
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134

Comments

  • 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,

    Stephanie
  • 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
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  • 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.

    Sharon
  • 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.

    RichT



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  • 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!

    "C"
  • 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.

    Cheri


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