Greetings, I've been seeing a pain management doctor for the last 12 years, for a documented (ie: MRI and every other test possible) spinal problem. I'll first say that this MD has given me my life back, as my condition was COMPLETELY debilitating. Over the last 12 years, I have been treated with injections and medication, and with the exception of some loss of fine motor skills, have become almost completely functional again. Now, on to my concerns and request for advice/opinions.
After 12 years on various narcotic pain medications, I've recently been having problems with the current combination which is 3 20mg Oxycotin's a day, and 4 10mg Methadone a day as needed for breakthrough pain. Back in August, I had extremely profuse sweating as a result of the medications, and one of the PA's took me off the Oxycotin, and advised to continue on the Methadone, 4 times daily. I tried that until two weeks ago. Taking the Methadone exclusively as a management medication wasn't working for several reasons. The biggest of which was it was turning me into a "zombie". The second was if I needed medication for breakthrough pain, I no longer had an option other than taking an extra Methadone which 1)Wasn't appropriate because it wasn't prescribed 2) Added to being a "Zombie" 3) Obviously would run me short at the end of the month. So when I went to my appointment this month, the other PA put me back on the 20mg Oxycontin, and stated that if I had the same problems, I should call right away and there were other long acting medications we could try with a different chemical composition. The one thing the PA stressed is not to just stop taking the meds because there were "all kinds of really bad things that could happen" like seizures, etc. So after a week of waking up every night, completely drenched in a slimy sweat, I called the office, left a voice mail explaining in detail what was happending, and awaited a return call. A nurse called back several hours later. "Dr. XXX wants you to STOP TAKING EVERYTHING". I specifically asked about the Methadone as well, and was told "I'll let him know you're still taking that, but he said he wants you to stop taking everything. If it's OK to continue taking that, or if he has any questions, I'll call you back, but at this point, he wants you to stop taking everything". I called them back 30 mins later, and left another message requesting a call back with a decision on the Methadone, and also that I had several question. I never received a call. Well, the Oxycontin went down the toilet, but I kept the Methadone. I called again the next AM, and got a call back a short time later from one of the nurses. "Dr. XXX wants you to DEEP SIX the Methadone, and follow this schedule with the Oxycontin...." Excuse me, I was told yesterday to stop the Oxycontin, and I can be honest enough with myself to admit that after 12 years on this type of med, if I have it here, I'll probably take it. Plus, I have 3 children, and if I don't need this type of med around, I'm not going to keep it around. What sense is there in keeping a medication in the house that I'm not supposed to take? "OK, I'll go back and talk to the doctor. In the mean time, DEEP SIX the Methadone, and I'll let you know what he'll want you to take". A short time later, I get a call back...."Dr. XXX said no one told you to destroy medication. At this point, he will not prescribe anything else, but will treat you for withdraws if you'd like him to".
Now, before I go any further, does anyone else see a pattern here? Notice that everything revolves around PA's and Nurses? This is no exageration. It has been over 2 years since I've seen a doctor. This type of condition, these type of medications, and all I've seen is his PA's. I've specifically expressed that concern when scheduling appointments, and still see PA's.
So after 2 years of not seeing the Doctor (except for a second or two when he walks in the room, just as the anestisa (sp?) is kicking in before the injections), and 12 years on these type of medications, I get told to stop taking everything, and all I've done is exactly what they've told me to. Honesty between a doctor and patient is of utmost importance for both the patient, the doctor, and ultimately the success of treatment. How can I even consider being honest with this doctor, when this is the result? I apologize for the length of this post, but obviously the details are important. Any suggestions, ideas, input would be greatly appreciated.
I'll finish this by saying that this Dr. DID give me my life back for the last 12 years. I'm scheduling an appointment to see him this week, hopefully to resolve whatever issues there are. But I'll also admit that at this point I can't help but to be considering legal action. I've been through hell the last several days, I'll spare the details there. I also can't begin to explain the pain I've been in becasue of the medical condition. If this was an appropriate course of treatment 12 years ago, you can imagine how I feel/how much pain I am in now/12 years later.
WOW! You know, my husband only see's PA's now. We expressed our concern as well and specifically asked to see the doctor...hasn't happened yet. I can picture what you are going through only because I see my husband suffer so much. I cry (not in front of him) when I see him in so much pain and that is with his meds. We sat here and talked about your posting and you are really at risk. If the doctor decides to stop treating you in this program, you may not be able to find another doctor to take you on. I recommend you use extreme caution and see if you can find another doctor to continue your treatment. I am happy for you that your doctor has given your life back but now you are in hell and you have to take care of yourself. My heart goes out to you and wish you the best.
Thank you. I obviously don't know you or your husband, but I will tell you, that without a doubt, you are the one thing that keeps him going. I don't know what I would have done through all of this without my wife. Even that's been difficult, because although much like you, she doesn't let me see it, I know what it is putting her through. I guess that's one of my biggest problems with all of this. Looking at what my wife and childern are going through, because of what I'm going through, kills me. It's frustrating. If I was doing something wrong, if I was "drug seeking", if I was "doctor shopping", if I was "over eating" my medication, then I have no one to blame but me. But in this situation, all I did was EXACTLY what they told me to, and was COMPLETELY HONEST with them, and this is the result. Back to thank God for my wife, whether or not I can trust my Dr. to be completely honest with him, and "you have to take care of yourself". I disposed of the Oxycontin the first day when they told me to. When they wouldn't call me back that day, I gave the Methadone to my wife to dispose of, thinking that if nothing else, I had another party that could confirm it should it be called into question. She, thank God, left them at a relatives. When the Dr.'s office offered their final bit of assistance today "Compazine" (sp?) for the vomiting, cramps, etc., she said "screw this, if they won't wean you off these meds, I will", and she went and got them. So that's where we're at right now. My WIFE, providing the medical treatment my DR has refused me. When all of this started-12 years ago, they had me sign paperwork/a contract about this kind of medication, which specifically stated that if they decided to take me off these types of meds, I would be "weaned" off them to attenuate any possible withdraw symptoms. Now if I had violated that "contract", and in 12 years, didn't, they would have enforced it. What happened to their end of the contract? Anyway, I again apologize for the length of this, but it helps greatly to vent, especially to people either in the same situation, or who have been there. geekambush, PLEASE make sure you and your husband are very careful. I don't want anyone to go through what I am. It's terrifying. The meds and withdraws aside-that's the short term "hell", I still have to then face the debilitating underlying medical condition. I have a family that I truly fear I will no longer be able to provide for. I look into their eyes, and feel I've failed them. I pray to God every night that He guide me through this, to a resolution best not for me, but for those I love. I'm going to make an appointment to see this Dr., even though my knee jerk reaction is to say screw him and walk. The obvious result of that will be to be "black balled", and no one will treat me. Plus, I have nothing to be ashamed of, I did nothing wrong, and he's going to see that, and that I'm not going to run away as if I had done something wrong. So my option is to have a face to face, no BS sit down with HIM, and not his PA's, and not pull any punches. I only hope he does the right thing. And if he doesn't, then I may need to seek legal council. Not to get even. I don't care about that. Not for financial gain. That doesn't matter either. If it gets to that point, my one and only goal is if I can keep this type of thing from happening to just ONE other person, the "hell", both short term and long, will count for something.
Actually there is a thing called Standard of Care in the law. If your Dr. saw fit to tx you with these drugs for 12 years and pull you off suddenly, I would raise holy war. Did he expect you to just stop? Outrageous. Then a week later say he would tx you for the withdrawal? The withdrawal should be gradual and in a safe facility. I would go after him. It it is through an HMO or you signed and arbitration statement to mediate any law suit, you will have trouble. Most likely any ins. co who fights for your Dr. will bring out the big guns. Good luck....and then having to deal with in pain. Write it all down, like you did here but more and send a letter, give him one when you see him and send one to the ins. co he is covered by.....Sorry you are going through this.
You are absolutely right to insist on seeing the doctor face-to-face. I've been in similar situations, and it turned out that the doctor had no idea what was going on. The PA or nurse simply made all the decisions. In both cases, the PA and nurse were fired. Don't automatically assume that this mess is actually coming from the doctor. What a total mess. :-(
So I call the Pain Management Doctor's office back today, as I was told to do last week by his staff, to schedule an appointment to determine what course of action we take from here. I specifically asked that the appointment be scheduled with the Doctor (again, haven't seen him in 2 years), and I get told they wouldn't be able to get me in to see him until at least the end of Jan. Ok, then can we start with one of the PA's, with a follow up with the Doctor? They can't get me in to see a PA until sometime in Jan as well...."Is it an emergency?". So I briefly explained the situation, explained that in addition, I had some concerns about some things one of the nurses said to my wife that were completely inaccurate which I wanted to clarify, that I am back to being in debilitating pain, and have not been to work since this started early last week, and that I have yet to get an answer about what to do with the Methadone. "Are you taking it?" Yes, I've taken it twice over the weekend when the pain got to the unbearable point. "Can I have a number to call you back at, and I'll have someone get back to you". Now at that point, I knew this wasn't going in a good direction, but I have to try. So I gave her the number, and requested that the Doctor himself call. I understand he has a staff for that, but given what has been going on, and some of the confusion, I would REALLY appreciate just a minute or two of his time. Well, 40 minutes later I get a call back-from one of the nurses-to tell me "DR. XXXX ASKED THAT I TELL YOU HE WILL NO LONGER BE ABLE TO SEE OR TREAT YOU."
So there you have it. 12 years of treatment for a documented, legitimate medical condition, which was "severe" enough to justify 12 years of injections, "joint blocks", NARCOTIC PAIN MEDICATION, muscle relaxers, sleep aid medications, etc., and I get told to stop taking EVERYTHING, but the nurse doesn't know about the Methadone. Of course she doesn't call back. When they call back the next day, they want to give me a schedule to take the Oxycontin. Wait, yesterday, I was definately supposed to stop taking that, and I got rid of it. "No one told you to destroy your medication". Well, given the reaction I was having, and the fact that I was told to stop taking it, and I have small children in the house, what was I supposed to do with it????? No one gives me a straight answer about the Methadone, what do I do about that??. I get told to call in today to schedule an appointment for "ASAP" to determine what course of treatment we are going to take from here, and, well I guess that course of treatment is NONE. Does anyone else have a problem with a doctor that treats you with narcotics for 12 years, then one day tells you to stop taking everything...oh, here's some Valium for the anxiety and Compazine for the sick stomach....by the way, don't come back. All because I had a reaction to a medication and called them to make them aware of it, as I was told to do!
I have been fired by doctors before for much less. I had severe migraines and they wanted to cut me off and finally quit me, or fired me. I was on Kaiser and wrote a letter about the standard of care that had been provided for me for years. They did send me to another Dr. but b/c it was an HMO, I was up the creek so to speak. Is there anyone that can take you ASAP? I would go to a site, forgot the name, that gives Dr's names in your city for pain management. My husband is an atty. and fought for a Dr. who lost his license for over prescribing to a patient that was also going to another Dr. The first Dr. was acused and lost his case. Sad, but true. These days Dr.'s have to be careful with those scripts. I found a great Dr who will help me when I need it and I do. I have Fibro and migraines that cause me unbearable pain. It really bugs me that they have to be scared to prescribe meds that people need. There are other Dr's out there and I bet you can find one to help. Obviously you need it now. Don't flush anymore meds! You may need them and I wish you the best in your search for a new DR. to help you.
This suggestion obviously won't help your immediate situation, but you really need to write a report about this to the AMA. It wouldn't hurt to consult an attorney if you have the money and energy to do so. This doctor's decision to abruptly discontinue narcotic therapy is causing you great pain and suffering, and is definitely unethical, and possibly illegal depending on the laws where you live. You have a written contract stating that you would be weaned off opiate therapy, and the doctor broke that contract.
These kinds of pain clinics get away with this behavior because their patients are usually so broken down they can't fight back. I generally shy away from any kind of litigation, but this case just cries out for some kind of justice.
I agree with Jaybay. They can't just cut you off. I would write them a letter and tell them what they did. This way they are on noticed. Mention that this was the Standard of Care for 12 years and no one ever explained why they cut you off or their reason for doing so. If an atty could write it all the better. But write your story and send it to everyone involved and the AMA or any other ins. co etc.
What no one has yet commented on is that the sweating you were experiencing was a symptom of withdrawal. Your tolerance level had increased. What you needed was an increase or change in your medications. At the very least, the doctor had a legal and moral obligation to wean you down. I suspect that the doctor had no idea that his PA's had medicated you this way for two years and now that you were facing severe tolerance issues he panicked. He misunderstood tolerance for addiction which it is not. Because you were calling about this problem, he mislabeled you as a drug seeker. It is unfortunate that our legal system terrifies doctors. Strangely, the same laws that require doctors to adequately treat pain also require non medical people, the various police agencies, to oversee what doctors are doing. Because of this, most doctors under treat pain and their patients suffer. There is even a name for this - pseudo-addiction.
Be sure to file a complete report of everything you have been put through to your states medical board. Inquire into your county's health department to get a source lists of pain management specialist in the county. It sounds like you have gotten the worse case of physician incompentant I have ever heard. I have been on varying pain mangement meds since three major car wreck that started in 1995 and have had to change dr.s three times. Its never any fun as each one looks at you like a pill popper at first, but do not let that discourage you! Be persistant. You can explain to new dr.s what happened but do not elaborate on any complaints filed with state officials or AMA, etc. We can thank the stories like Anna Nicole Smith's for the legal systems harrassement of pain mangement doctors. The pendulum has swung and we are now in a state of Narco Paranoia.
You are correct about not telling about reporting the complaints with a new Dr. But I would give him a copy of your story that you send your Dr. It is really outrageous. I sure hope you are feeling okay and have some meds left!
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