Hi, my name is Tom, I am using my wife’s account to write you. My wife, Jane, has been advocating for a long time now. Unfortunately, she fell during a doctor’s off, face first off of the exam table. That was the beginning of the nightmare that I now find her in today. She is unable to contact you herself, or she would be the one contacting you about my question(s) . I want you to know that she is not only a pain patient advocate, but also she is a medical researcher and was working for a large hospital system here in mid-west. She has POTS (Postral Orthostatic Tachycardia Syndrome) initial fall came during an appointment with a new cardiologist. She fell off the exam table, after the doctor asked her to stand up to see how orthostatic she was at the time. She also had Chiari, and has had multiple surgeries, none of which has helped her. During the hospitalization, She was put into an induced coma, it was to help her because she had major brain swelling due to the trauma caused by the fall. She fought hard and she was completely off of the ventilator for three days, then she developed pneumonia, she was put back onto the ventilator immediately. While in the coma, a doctor decided that she needed to have a routine urine test, and they also did a urine drug screening. They tried to say that she didn’t have the right levels of medication in her system. They forced me to leave her side for 4 days as they went through the cameras in the ICU. (I guess they thought I could have somehow get into the locked pump? Impossible, right?) After they re-tested, the results were the same, but she supposedly tested positive for “Norco.” The entire situation is ridiculous! How would they know what medication in that group it was specifically, and how in the world could she have taken it with a trachea in? Then things got worse. Suddenly, her palliative care provider decided that she was “too complex” and they dropped her. Then, her pain doctor (doctor that writes her prescriptions) was raided and all patients were dropped, if complex or needed high doses. And now she is still in the hospital without a pain management doctor to follow her after she gets home. I believe in my heart that she is a fighter, and will pull through this. But I don’t know how to fight this. I have talked to patient advocates, her close relative spoke with the president of the hospital (Her relative is an attorney and retired from the deanship at a Law School) and the hospital keeps maintaining that they cannot help, and there was no way the urine test could have been wrong. They are so corrupted! We requested an immediate blood test when we were told that she had “Norco” in her system, but it never happened. Then, yesterday, the head of the anesthesia department came to see her to see how she was doing. During this visit she informed her father and I that as of June or July of 2019, there will not longer be a diagnosis code for chronic pain. And that they will be placing a number of pills needed for any surgery someone may have. For example, they will only allow three days of low level opiates for a same day surgery. Possibly up to 7 days for back surgery, etc. I asked for any paperwork that she may have regarding this, and she said that she would bring it to me when she comes back next time. I was in such shock, I failed to ask if it was going to be a state or federal law. Jane would have known what to ask, but it comes naturally because of her training in medical school, and working for the hospital (different hospital system than where she is currently inpatient.)I apologize for my lack of all of the correct medical terminology, I am learning in the moment and I may have misspelled some or many of the medical terms. Do you have any advice you can offer me? Have you heard anything about this change in chronic pain diagnosis codes? She basically said that there will no longer be a classification for chronic pain. If you have any advice or information that may be helpful, please message me back! I have lost trust in anyone working in the hospital, they all join together as a corrupt group that will never correct anything that another doctor has said or done. I have heard over and over again that “If Dr. X said that, then it must be correct.” I have also been informed that the only medication that she will be able to go home with is Suboxone or Subutex. (sorry if I butchered the spelling) I have reached out to other people in the chronic pain community that knows her personality, and 4 out of 5 told me that you were the one to contact for advice and guidance. I apologize for reaching out to you on this platform, I wasn’t sure how to best contact you. I look forward to hearing from you! Happy Holidays!
“as of June or July of 2019, there will not longer be a diagnosis code for chronic”
A year or two ago the diagnosis coding system ICD9 was replaced with a new and revised ICD10 codes and the number of diagnosed codes were DRAMATICALLY INCREASED. Here is an example of the number of ICD10 codes referencing pain https://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G89-/G89
Putting a pt on Suboxone or Subutex will virtually automatically have someone put a ICD10 code of “opiate use disorder” on her list of health issues. Would almost guarantee that a pt will not get a opiate for pain in the future.
Here is a article that I authored about the reliability of urine tests http://nationalpainreport.com/when-the-urine-test-lies-8833834.html
No blood/urine test is guaranteed absolutely accurate and reproducible, it is claimed that with a urine test that you can expect a 20% +/- false positive/negative. And urine tests are defined as “qualitative test” the substance that you are looking for is either there are not… it is like a pregnancy test – you are either pregnant or you are not based on the presence or absences of a single hormone. For the hospital to say that “the right quantity” did not show up in a urine test is PURE BULL SHIT !
Blood tests are “quantitative tests… the come back with “how much” of a substance is in the blood. They can also vary from one test to another.. it just depends on what you are looking for because the body has numerous biological cycles and values can/will vary given the time of day that the sample is taken, taken on empty stomach or not … etc…etc…
The best non-medical reference I can give is to ask a person to take out their driver’s license and ask them to make a comment on the pic on their license and is it a good reflection of how you look or have looked in other photos ?
I do not know if this hospital is just one large hospital in the mid-west or a teaching hospital, if the all the healthcare professionals are independent practitioners or JUST EMPLOYEES of this corporate healthcare system… but I don’t think that this story and this pt’s issues concerning her pain management will have some more things coming to light.
Filed under: General Problems
Had a Doctor do a test in house.
Refused to show me the results and swore that had sent it out for a 2nd review.
They never billed my insurance and I know they never paid for it themselves. It was all done as a point to get me out of the clinic, a long with another fishy situation because he wanted Medicare patients gone.
Found out 6 weeks later he was getting rid of the insurance supplement I had well.
He was diabolical.
My urine drug screens sometimes come back that I have too much of my pain meds in my system but, I have one kidney with reduced function and have to explain every single time why it came out that way. Doctors and hospital staff are looking for bogies at every turn! This is a horrible way to treat this gentleman’s wife, especially considering the condition she’s in.
Why was she drug tested in the hospital anyway? That makes no sense especially considering she was in an induced coma!
When will this nightmare end?
It is best to know exactly what type of test was done, and what the actual results were as reported from the lab. It is also mandatory to cross check these results with the medications prescribed in the hospital. The urine tests do not account for altered absorption of the drug.
She and Tom are both victims of the psychiatric condition of Factitious Disease Imposed on Another. The doctors and hospital are the real perpetrators of FDIA. Ironically the real perpetrators are accusing Tom of having FDIA with Jane as the victim. (FDIA is well described in the Diagnostic and Statistical Manual, 5th Edition.) I think ALL chronic pain victims, caretakers and advocates need to loudly and repeatedly assert that the anti-pain zealots are in fact the perpetrators of a cruel and deadly form of Factitious Disorder Imposed on Another.
First, you must look at your state laws. Barring it being your state, none of what this hospital is telling you is correct. Even in states where prescriptions are limited to 7 days for acute pain, after those 7 days the prescription can be written for the normal 30 days. Please do not let the lies they give you get in the way of obtaining proper treatment that you deserve. I see many unconscionable doctors telling these tall tales to patients, believing that we will just accept it as truth or that we are too stupid to fact check. The truth is that beyond just a very small monority of states that enacted a 90 mme limit (only 2 or 3), even the 90 mme “rule” is not a legal requirement and prescribing above it only requires a bit more documentation; and in the states where it is law, a patient need only be documented as palliative care for it not to apply. The lies being told by doctors to patients in their most vulnerable moments are the most disgusting part of this mess.
I also read in the palatine care regulations once a patient is diagnosed as palliative care they can not take the diagnosis away???
Also your wife’s doctor can not drop her a float as that is patient abandonment.
If I were the doctor who told her to stand up and she fell off the table having the diagnosis she had she should have had support from doctor and nurse to stand up.
Cardiologist should be worried about a malpractice suit.
They all may be worried about that so trying to make you and wife look bad with unreliable drug urine test. You should be keeping notes on what’s happened during this hospitalization and who said what.
Since many states have enacted acute prescribing rules of 3-7 days, like here in Oregon, it sounds to me like it was a justification to pull her off opioids. They took out her diagnosis of chronic pain thereby making her an acute niave pain patient. This is criminal. Truly criminal. They should be sued.
What they aren’t mentioning is that they can be prescribed more after their first 7 day script.
My PMS suggested that I as a 25 year patient “try” suboxene also. He said….I could always go back to 90 mme of the same medication that has worked well and documented as working well for me for the last 20 plus years. Such bias from the very professionals that are supposed to be interested in my pain management. I suppose that self preservation even if it is wrong is the rule of the day. 9 to 11 million people in the US truly have less pain, are able to manage pain and are able to function at an optimum level with opiate medications as published by CDC but, evidently we are now totally expendable. If only the shoe could be put on the experts feet who live with little to no pain, this extremely biased torture would do an about face so fast the 2016 CDC “guideline” would be immediately reversed. Vigilance and determination to stop the unnecessary forced torture will be the only way that this manufactured “opioid crisis” with subsequent forced tapering and insanity will be realized. Recently my 81 year old Mother fell and was rushed to the ER. She was examined and it was found that indeed she had broken her hip. She is extremely resilient. She has broken one of her hips once and the other hip twice over the last several years. So, now she has injured her hips 4 times. She was NOT admitted to the hospital, she was NOT given any type pain medication at the ER, not admitted, sent home and advised to follow up with her doctor. I took her home and called the hospital administrator. He offered very little in the way of an answer for how she was treated.Regardless, good luck Tom and I sincerely hope and pray you find a path for you and your wife.
Just wanted to fix my mistake from my earlier comment. The scale used is called COWS not PAWS, it’s the ‘clinical opioid withdrawal scale’, it is a scale they use to determine if you are sufficiently withdrawaling before starting suboxone Or buprenorphine. I am not a medical doctor by any means, I have just had a lot of experience with these medications, but again I’m just a high school graduate with zero professional training. Please be sure to research for yourself if you find anything I recommended to be of interest to you! Thanks
Does anyone know if this is a teaching/public hospital ?
Mr.Tom,,,,,I concur w/Jennifer and canarensis,,,I too am sorry and feel bad for what their willfully putting u thru.With that being said,,,these Doctors are lying to you,,they are lieing on all her documentation and u can bet,,,all her medical records have already been deleted or changed.This corruption was and is being done to me also,,,soo I know,,,some doctors will literally kill a patient,,,to protect their own lively hoods.
If u can afford it,,,get her out of that hospital,,,,if not,,,,get a secret nanny cam set up,..
Immediately get some of your wifes hair,,,keep it as sanitary as possible,,like the reverse plastic bag technic.Get it tested as close to the original date of that false pee test.
Get a spy pen and record every conversation u have w/any medical people.
Get a lawyer,,,,,that urine test is a lie!!!!
JMO,,, that is what I would do,,,and get her records asap,,,,good luck,,,,your gonna need it,,,,,maryw
First Id like to say I am so sorry you and your wife are going through this. I can relate to a lot of her story but not all of it. I have never had the pleasure of being accused of failing their BS urine tests but I have been dropped from pain management for a BS reason. I had been going to the same clinic for almost two years when the CDC put out their ‘guidelines’ in 2016. I was given a questionnaire on my return visit after having my surgery in NYC, I live in Montana and was gone almost a month so my return visit was in January of 2017. I didn’t know a lot had changed at my pain clinic over the course of a month. One of the questions I was asked was, have I ever tried an illegal drug? To which, like an idiot, I answered yes. I wrote that when I was 16 I tried meth, once. I’m stupid honest sometimes. I was immediately dropped. I was given a few blood pressure patches and told that if I wanted I could go to a suboxone clinic. I was dumbfounded. I went to my primary care doctor who was already prescribing part of my pain medications, which at the time was a Butrans patch. Now Butrans is the patch form of suboxone but does not have the naloxone in it. Naloxone is what they give you when you overdose. It’s also a lower dose than normally given for suboxone treatment. It’s generic name is buprenorphine. It’s the main ingredient in suboxone, subutex, butrans and belbuca, it also works for pain for some off label, that is not as an opioid addiction drug, but as a drug that works for chonic pain. Unfortunately once prescribed this medication, it is hard to be considered anything else but an addict. This drug is wildly misunderstood in the medical world. It can be used in conjunction with full agnostic opiods (hydrocodone, oxycodone, etc..) but has to be done so in a manner that does not cause precipitated withdrawals. Generally if you are on more than 30mg a day of a full opioid agnostic and then given buprenorphine then you will go into these horrible withdrawals. I say generally because I’m sure some people may react a little different depending on their unique metabolism of drugs so 30mg may be one persons threshold where 20mg may be someone else’s. To be safe you should be in withdrawals before you start buprenorphine (24 hours after your last dose of short acting opioid is sufficient normally but you should refer to PAWS and check to see if you are sufficiently withdrawaling) and then after being on it for a few days I would reintroduce your full agnostic pain medication. This combination of Butrans and my 60mg of hydrocodone, before being dropped, worked well for me. My primary doctor felt sorry for me but still could not help me in the manner the clinic could. She at least weened me down to 15mg and has since been able to maintain that dose for me. She does sometimes bring up that she may one day have to cut the hydrocodone out all together but so far so good. I did request to be changed to belbuca which is the same ingredient in butrans only a different delivery system. This one is delivered via a patch you place in your mouth (buccal) and is available in higher doses for those that may need more pain relief or who are allergic to the adhesive in the Butrans patches. I like it because the patches did cause me a to have an itchy rash at times. I also couldn’t submerge myself in water, even showering was sometimes difficult as it would loosen the patch. Also if you run hot like I do, you risk soaking up to much of the drug at first leaving you feeling crappy on the 6 and 7th day you are wearing the patch before you can put a new one on. I say to all of those out there being forced to be without medication or forced onto suboxone, ask your doctor about belbuca instead. Im almost positive you don’t have to have any special training either to prescribe Butrans and Belbuca unlike suboxone. At least research it yourself. It really does help if you have no other choice. I know that’s not what we are trying to do here. We are trying to get our rights back our medications back, not give in and give up to these addiction drugs, but I also know what it’s like to suffer and be forced off your, for some, very life saving pain medications. It will stop the withdrawals and for many take away a lot of your pain. It won’t work for everyone, I’m aware of that, but I thought it would be nice for you to know it’s an option that can work for many. It’s still new so you may have to educate your doctor or ask that your doctor remains open minded and look into it for you. They will be much more likely to prescribe it because of its low risk of addiction and its ceiling effect on the respiratory system. It is suppose to be a lot safer, less of a chance for overdose and less addictive. Full agnostics can be added to it, and being forced to a lower dose full agnostic with the belbuca can be enough to satisfy your pain management needs. Be sure to ask your doctor to write in your file it is being used off label as a pain medication and not for addiction treatment. It may help, it may not, but Its worth a shot. I do have Chiari, POTS, and Ehlers Danlos Syndrome along with a whole host of other problems related to the above issues. I do understand this horrible situation she is in.
I will never go on Suboxone. Your automatically deemed an addict and you will never get opiates again. It willwbe in your records. I have cancer and I am having trouble getting my pain meds. Many cancer patients are undertreated and left in excruciating pain. Many turn to suicide because they cannot handle the pain. They are slowly killing us. God help us. The thought of dying with cancer in such pain. I am frightened to death
Becky I am so sorry . It is terrifying what is happening and yes the corrupt lawmakers and co. are killing off the chronically ill and our Vets.As far as the subs go. I too heard the same thing BUT when my dr dropped me I was nearly out of meds, couldn’t find a dr to take over, nearing the end as the pain became unbearable and was trying to gey myself prepared for withdrawal and being in hell. I did break down and went to a sub dr as I was terrified of withdrawing on top of severe pain, I was on it for 3 weeks, it did nothing for my pain…I then found a dr was ho est told him everything I was thru for 20 years, and he gave me meds. of course nothing even close to the doses I use to be on. I honestly dodnt think I’d get
Good lord, it just keeps getting worse. Is there no bottom limit to which our so-called medical community won’t lower themselves?
and, guaranteed SUD diagnosis aside, doesn’t Suboxone cancel out pain meds, making it irrelevant whether the patient could get any or not? I thought it was an opioid antagonist –meaning pain meds wouldn’t do anything anyway. My own doc decided last appointment that I should decide to let him switch me to suboxone, despite the fact that I’n already considerably below 90 mme, & have been for years, & my pain is pretty well controlled by what I’ve been on & I have no side effects. I won’t be switching, even if he sez suboxone or nothing…I’ll go with nothing.
Yep, absolutely right about suboxone. And it was never meant to be used for pain. It’s not even effective.
Agreed! These drs that are pushing subs on pain pts should be ashamed of themselves!! Many many years ago I was given that sh** and at the time was on high doses of pain meds ( im a rapid metabolizer) . I wasnt told to wait 24hrs or until I was in withdrawal. told to just take it.. I went into full blown withdrawal because there was still oxys in my system and didnt wait long enough to take the sub. It was no mild withdrawal, It landed me in the ER, I thought I was gona die. I had no control over anything. my blood pressure dropped the pain omfg i wanted to die. IDK about taking pain meds with subs now. maybe somethings changed?