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What to do

kimmeamkkimmeam Posts: 149
edited 06/11/2012 - 8:32 AM in Chronic Pain
I am now 10 months post acdf c5/6.
I have never gotten relief since the surgery, well yes some of the numbness & tingling in my fingers is gone until I sleep then it's back.
My surgeon dismissed me & left the state in Dec. I have been seeing the Dr. that first did the EMG testing & referred me to the surgeon for my c3/4 disc. I'm not sure what his offical title is but he has been handling my pain meds.
Now he wants to take me off opoids. He said to get a new baseline of my pain. Once I am totally off of the opoids my pain level will be where I am today. Then possibly send to a pain magement specialist. I was on oxycontin 15mg. 2xper day & oxycodone 5/325 2 every 4to 6 hours. Now I am no longer on the oxycontin at all & he wants me to take just 1 oxycodone max 4 per day. He aso gave me flexiril 1 or 2 every 8 hours. Celebrex that I am not going to take as I have a faulty heart valve & what I have read I just do not want to take any chances.He is ok with this. I can not take ibuprofin as it wreaks havic on my stomach. Cymbalta has not been filled as the pharmacy is waiting for approval from my insurance. He did give me a week sample. I also have something for withdrawls if needed. So far I have only noticed a chili feeling.
I am unable to function on this schedule. I have to take 2 oxycodone every 5 hours, just to get through my day at work. So I am taking just 5, sometimes 6 on my work days. I stick to the 4 on my days off & spend the day in bed or on my recliner with my heating pad in agony.
I know this is a long post. I do apologize. I just want to hear what others may think.
I have gone through numerous p/t and accupunture,1 ESI. I have done all that I have been prescribed to do & no relief.
I did see a different N/S whom he referred me to. He only told me that I am not a surgery candidate now unless my symptoms worsen. Diagnosed me with failed surgery, meaning that I am worse than before the surgery.
I can not live like this. My employer is getting very frustrated with me. That is why I have to bump up my meds when I work because I had to miss so much. Not working is not an option for me. I am far behind financially as it is because of all the medical bills.
Okay I am rambling. I'm just looking for some words of wisdom. Any & all will be greatly appreciated.
Kim >:D<


  • i dont know what some doctors have against oxycodone .it a very good pain killer ..my and my doctors view is if it help with the pain then take it ..i like you carnt take anti inflammatories .and just take oxycontin and oxynorm ..wanting you to come off narcotic with chronic pain is madness if you want my opinion!! good luck Kim
  • :) I don't have much to offer in the way of advice but felt compelled to post because I just can't believe you're able to work in so much pain. The added stress of trying to perform at work while in so much pain does not help ease the pain. Are you able to use a heating pad or ice (whatever helps you) on your back/neck while at work? What about lidocaine patches or pain patches? I don't have experience with these patches but I hope others will post to you about their experience with the patches.

    I'm hopeful for you that the pain management doctor you will be referred to can make you more comfortable so that you can make it through your work day. Maybe, you can ask the doc you're seeing now to step up the referral to the PM doc since your pain levels are off the chart.

    Just sending you hugs and support -- even the strongest of us can get humbled by pain -- you're not alone -- let us know how you make out and keep posting if you need to vent -- we're all here for each other.

    Take care,

  • It sounds like your doc want you to get off the meds to see just how bad your pain is without them so the PM doc can start you from scratch. Unfortunately, he doesn't seem to understand that it's impossible for you to function without some help from pain medications.

    Is it possible that you can call him and tell him that you don't believe that you will be able to function at all if he takes you off all meds? Perhaps if you can convince him to send you to PM now, before you're off the meds, the PM will be able to handle things the way they really need to be handled.

    I'm just afraid that this new doc doesn't fully understand your situation and hopeful that a PM doc would.

    Good luck and keep us posted. I'm so sorry you're going through this. Gentle hugs to you.
  • I honestly don't see the point of weaning you off just to get in with a pain specialist. All it would achieve is creating more misery for you- I don't get it. How long will it be before you get that referral? Let that doctor know that you cannot work in this way, and also that your boss is giving you a hard time. I'm sorry you're going through this and I hope things work out for you. Take care
  • But, I think it is POINTLESS! Since you can not function on the reduced meds you are endangering your livelihood.

    I would call the doc and simply tell him you can't do this and keep your job. Ask for a referral to a P.M. and go from there.

    I had the same issue with my SCS, I was told by the PM that I needed to be off pain meds to even do a trial! Now, if I could function off pain meds I would not have been taking them! Thankfully I went to another PM for the SCS and he did not make me stop pain meds. Now I only take them intermittently. I still take them on bad days.
  • I appreciate all of your kind words. I have an appointment with the Dr. who is covering my meds on mOnday. I will tell him again that I can not live the way he wants me too. I can not suffer like this any longer. If he can not help me then yes refer me to someone who can sooner than later.

    I didn't think taking me off the meds could benefit me at all but he is the Dr. Why do I have to suffer so much though. He thinks that the muscle relaxers & cymbalta will be all that I need for the pain. So far neither of them do anything for pain relief. I haven't taken the cymbalta since the samples he gave me ran out. I have to fight for my relief I guess.

    My employer knows what meds I have been on & what I am going through now. He only had a problem as did I when I was on the lyrica & then neurontin. They messed my brain up. I do not like that. Dr. says do not take. As long as I can function & run his office productively all is good. He is concerned with the pain that I have to endure everyday but then as long as it doesn't affect him personally he doesn't give it much thought. When I suffer his business suffers. That's when he really gtes concerned. Dr. wanted to give me a note for 2 weeks off of work. No that is not possible. I don't think that would help me at all.

    I will let you know how my appointment goes on Monday. I can only hope for the best. I don't know what he'll say when I confess that I have had to take 1 or 2 more pills a day during the work day. I guess I'll find out.
  • Some medical people (others too) don't really listen to what you say, on the basis that they already know enough to decide what to do.
    They are the experts, you are the uneducated.
    See how you go with him, but if he insists on the drug withdrawal, ask him just how you are going to be able to cope with home and work in intense pain.
    Can you still drive? Are you unsafe?
    Really pin him down on it, so he will understand that you are seriously concerned.
    You really have to satisfy yourself that he does fully understand.
    Get him to explain how you will function.
    Put the pressure on!
  • I'd look for another doctor. Today we have so much knowledge and information at our fingertips. You are much better educated than patients 5 years ago.

    You have every right to develop your own plan for your treatment. If your doctor does not agree with you, you should listen and evaluate, but you are in charge. If s/he does not agree with your program, I'd get another doctor.

    My mother has a doctor that won't listen to her, does not return calls, takes forever to do things, and it truly amazes me. Why put up with that stuff? But I digress...

    You are in charge of your health and your recovery - recovery to what ever level that you can achieve. No one has a more vested interest in your recovery than you do. Also, no one knows more about YOU than you do.

    I've learned so much about my recovery from different sources. It seems like each MD, or Chiro, or PT, or acupunturist, or surgeon knows some little piece of knowledge that I can apply.

    Good luck and I truly hope that you find some relief! And by the way, I think pain meds are great. I'm worried about getting addicted myself, but more concerned about managing pain while I regain strength.


  • I fully agree with what you have said, especially how you must take charge, and make use of the different bits of info from each health professional.
    Wouldn't it be great if you could go to just one to sort everything out?
    You really have to know your body, as you say, and ask the hard questions about any treatments or lack thereof.It can be very difficult to accept this when you are very ill with a low tolerance of anything new or that requires effort, but it must be faced.
    In the end, they can only do so much and it is finally up to you to make it all work, as there is a lot more to getting well than medical procedures and medications.

    With this in mind, I went to see a physio yesterday, and asked him what he saw as my future in relation to the shoulder muscles giving me headaches. I said that if he couldn't explain it, would he suggest someone who could.
    Anyway, he explained that a lack of back muscle strength was causing the shoulder blade muscles to contract and knot, pulling on the neck muscles and hence the headaches.
    I have to get those muscles strengthened by exercising them. The ones that I am doing are the best ones, so I just have to persevere.
    That was very good to know.
    Remedial massage will help with the knots and pain, but it depends on regaining the muscle tone to stop the cycle.
  • Peter,

    I flipped over the handlebars of my bike a few years ago (back when I *could* mountain bike :) and broke my scapula. My shoulder blade never did quite make it back into the right place. I've been seeing and acupunturist for my back lately, and she also does theraputic massage during my visit. Its been helping with my shoulder as well.

    I think qualified physical therapists are great! Good luck with your recovery.

  • Kim why did they fuse your c5-6? what did your mri say?
  • I just wanted to warn you about how you were taking your oxycodone 5/325. That 325mg is acetaminophen (Tylenol); and if you take 6 on your bad days, your taking 3900mg (4000mg, or 4 gr, is considered to be very toxic to the liver!!). This is why most pain docs don't want patient's to take more than 4 of the oxycodone, whether 5/325 or 10/325 per day. Make sure that your neurologist/new PM is aware of that; they can write you the 10/325 to break in half, so you still get the 5mg of oxycodone but only 1950mg of acetaminophen.

    I a so sorry you are in pain; I think its extremel
    y unreasonable for a doctor to expect a patient in serious pain to wean off pain meds in month; I think it might be time to ask him to be referred to someone more comfortable with long-term pain management.

    Its so unrealistic to expect you to take off work - the way the economy is you need to keep your job!
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