My common law husband has pinched nerves that, when the pain is unmanaged, reduce him to living in the corner of the couch except to go to the washroom. He went through the old system.
It took months of trying every drug before opiods, during which time scary things happened like black pee, pain getting worse, joints not involved in the injury freezing and more. There were a few times I thought that the non-opiod drugs would land him in hospital for good. Then we finally reach the pain clinic (by this time Mark has gone through all of the drugs that he could so he is on an opiod that is working). The pain clinic does a rushed interview in which they take no notes, do an assessment of his walk and shoulder height, then send a letter to the family doctor stating that the pain is in a completely different region than we told them and they demonstrated in the meeting; clearly getting cases confused since they took no notes. The letter suggested adding anticonvulsants. We did add them, because the family doctor agreed, but our trust in the pain clinic was zero. That helped enough that he could get out of bed with less than an hours self-talk and do the odd bit of moving.
At the same time we're going through the system to gain some more permanent repairs and he has surgery to fuse to vertebrae.
The pain reduces at first, then the insurance company harasses my husband into going to physiotherapy more often. The physio and physician don't suggest this, but my husband does it because he's drug addled and convinced insurance has some sort of right to make medical suggestions. Of course the pain starts to get worse, at first they blame the new swelling on over-activity. When the swelling goes down we face the truth. You see, we knew there was a risk that if the bones didn't heal just right other vertebrae would be in crisis. The other vertebrae showed in the MRI and were identified as potential future issues long ago. Now C7-C8 had joined C6-C7 in their need for immediate attention. The net gain, 2 hours of being awake a day as even pain hidden by opiods is exhausting, being able to drop the anticonvulsant which was causing side effects, and being able to lower the dose of opiods.
A couple months ago he was sent a letter from our family physician. The family physician may no longer be able to prescribe opiods so we need to find a physician to add to the care group just for pain medication. My husband delays and delays more even after I email the College of Physicians and Surgeons to gain the list of approved MDs. Finally he goes in.
This is where I get mad. Think about costs to the taxpayers for all these tests and appointments, and read about my caregiver terrors and husband's pains.
Four appointments are required by the new physician to even talk in a meaningful way to the new MD about pain drugs. Fine, our family physician hasn't had his ability pulled yet. Really annoying looking at the amount of money and time being wasted, as all of these appointments are repeats. Somehow my partner develops horseshoes up his ass and the clinic he chose has most of these physicians in the same building. So, first; is he really taking opiods. Another pee test. Something he's had to do regularly to prove that he is still taking this regulated drug. Yes, yes he is. Second, the usual scans for health and consult with the MD who tells him that he has to run the entire gambit of non-opiods again except this time he has to add in medical marijuana. He advised the doctor that he has had bad reactions to marijuana, even other people smoking in a room when he isn't. Nope, he must try it and in fact MUST try it first (huh? Why would you try something that you know can cause issues first; money grab?). In order to try it he needs to go to another pain clinic type MD. There's one at this office, he goes. The pain clinic decides that my husband is a candidate despite the second warning that my husband has had a bad reaction to marijuana in the past and has high anxiety which is supposed to be a contraindication to marijuana usage. To add insult to injury my husband is advised that he will be forced to pay a $100 fee to have the privilege of carrying a card saying that he can take a drug that is likely to hurt him, payment due before receiving the drug. This now has to go back to the MD that will prescribe for pain and he's totally gung-ho to do this.
What am I going through as a caregiver?
I don't know if I can take the next step. Will I have to take my choice of life partner to the hospital? How will I get him there if he is having an anxiety attack and goes into a fugue state where he thinks that everyone is trying to kill him. I've had to chase after him down the street before. What about all the other drugs that we tried before, why do we have to try them again. How many days will I be kneeling beside his frozen body on the floor wondering, should I go to the hospital this time or will this time too pass safely.
Add to this that the money is running short. The $100 has me considering closing my business for good. If I have to call an ambulance... I have no idea where that money is coming from. I'm already eating less and less to help keep finances up and taking riskier jobs.
This is insanely evil treatment of people. Trying to get my not addicted husband off opiods is insane. Want to know how I know that he isn't addicted? Addiction has a definition. See whether he even comes close to qualifying in my heartfelt comments in each set of square brackets.
The DSM V checklist as quoted in the article, "A Guide to DSM 5 Criteria for Substance Use Disorders", by Elizabeth Hartney, PhD at https://www.verywellmind.com/dsm-5-criteria-for-substance-use-disorders-21926 states:
- Taking the substance in larger amounts or for longer than you're meant to. [has reduced his use since starting and after the first surgery]
- Wanting to cut down or stop using the substance but not managing to. [If you want to call the medically confirmed failure of his next vertebrae down meeting this marker, yah, OK. He couldn't continue to cut down because the next vertebra failed. Pretty sure that isn't what they mean here.]
- Spending a lot of time getting, using, or recovering from use of the substance. [I get the meds, he often forgets, and he sometimes even forgets a dose only to find himself almost paralyzed by pain within an hour and is stupid enough to wait until the next dose comes around]
- Cravings and urges to use the substance. [I would say no, he keeps talking to me about not wanting to become addicted and does stupid things when I'm away like try to take a day off the drugs; which always backfires in pain and never causes him to develop an urge for drugs, just an urge to reduce pain]
- Not managing to do what you should at work, home, or school because of substance use. [Not a problem, tries to do more than he should and keeps tiring himself out. Often the pain level is high enough that he should take more drugs, but doesn't]
- Continuing to use, even when it causes problems in relationships. [Let me be perfectly clear here, his desire not to use the drugs is causing a problem in our relationship. If there's a fire and he can't get out because he decided to skip a dose... ARGH]
- Giving up important social, occupational, or recreational activities because of substance use. [Nope, but has given up to some extent because of pain.]
- Using substances again and again, even when it puts you in danger. [No danger detected, being carefully monitored by the MDs, no changes to metabolic function detected.]
- Continuing to use, even when you know you have a physical or psychological problem that could have been caused or made worse by the substance. [Again, a problem if he doesn't take it. It's nice to feel human enough to clean yourself, occasionally feed yourself, and be able to move more than four feet. I have seen no signs of anything being made worse by the opiod other than a foggy memory at times.]
- Needing more of the substance to get the effect you want (tolerance). [again, he's taking less now than before so, nope. No dosage increase for a long time by now, remember he didn't act on the letter stating we needed to find a new MD for a while. This article doesn't give you dosages and a timeline, but even when the pain started to increase again when the next vertebrae pinched in, he tried to stay at the same dose until we confirmed that the swelling wasn't the problem. So, attempts to increase, zero. Family MD and wife telling him he damned well better increase the dose or diversity of drugs so that he can have some sort of functionality now at 3 since he kept refusing the take more when the first baseline was being set before the first surgery. The MD finally convinced him by showing him how much damage his pain riddled muscles could do by tightening too much.]
- Development of withdrawal symptoms, which can be relieved by taking more of the substance. [no shakes. The drug treats pain so yes, if he doesn't take it the pain comes back. However, since he has been stupid enough to do this experiment I can clearly state he has no withdrawal symptoms other than life altering pain. Also, the pain never really goes fully away, it only becomes manageable.]
Here's the gist of the phone call.
The College of Physicians and Surgeons is saying that this extenuating process is not their recommendation. They sent me what they have told MDs to do and I am still re-reading and processing it. First, does Mark, according to the College HAVE TO try marijuana? No. Second, should he have been sent through such extensive re-assessment; perhaps, but they don't require it. They do require assessment of the data in Netcare, they do require an evaluation of whether or not the dosage could be lowered by adding or removing other types of pain management. They do require following some Standards of Practice. He was going to send me a document about this, which was titled "We Care About Patients". One really weird thing... Even if Mark was prescribed marijuana apparently there is no card to carry or licence. The College does register the patient as taking, but the registration is free. So, where's this $100 coming from? I was advised that they can charge $100 for training in how to use the drug, but nothing like a card or registration fee. So, is this just a milk of the system by one MD or do they really believe that they have to do all of this and why?
I would post the email as a snippet, but it has a confidentiality statement on it. I can post a link to the We Care about Patients thing because I found it online - Yay! http://www.cpsa.ca/wp-content/uploads/2017/04/FINAL-Message-to-Albertans-with-Chronic-pain-vertical-4.95x13.58.pdf The quote I find interesting and clearly not what is happening; "It is never appropriate to abandon a patient on long-term opioid therapy, or abruptly cut off or threaten to cut off the patient’s medication." Mark was told he HAS to try other treatments, specifically marijuana, after he identified a contraindication. That sounds like a threat to me. To be clear, we're open to trying other medications, just would like open discussion and choice, not being forced into trying marijuana.
Truly, trying to understand the MDs side of things here. My initial expectation, and it seems the College's expectation was a Netcare review, discussion, and decision to continue with the same treatment or add more treatments in one appointment. At most I expected some lab tests to see if Mark's system was being negatively affected by the drugs. So, why would an MD do so much more? If I knew that many MDs were facing the loss of their opiod prescription ability what would I do? To be honest, check that Netcare already used at least 3 confirmable independent MDs or diagnostic tests and move on to the next patient after assessing stability. At most a single consult - which this MD does using their on-site doctors 'in training' anyway. In the past we've used more than three confirmable sources to document the issue and pain already with pain clinics, X-Rays, MRIs, nerve tests, surgeon, and physiotherapy. However, this other MD must have patients that cause red flags. So, would that be enough for a diligent, and possibly terrified, new doctor taking someone on that might cause red flags on their profile? I would hope so. Apparently our new MD disagrees.
This still leaves me wondering. What can the governing bodies and protective associations be saying about this that is causing such extreme costs? I don't think this ends with the College saying no, we didn't suggest this. Is our new MD just that scared, or are there really other recommendations. I will find out, because this is insane. I don't know if clinic fees have increased. So, I assumed that they have and made some estimated rounded costs of the LAST 4 WEEKS of my husbands care that taxpayers would not otherwise pay based upon two old articles. https://globalnews.ca/news/2898641/how-much-is-your-doctor-making-what-you-need-to-know-about-canadas-physician-workforce/ https://www.bloomberg.com/news/features/2017-11-06/how-doctors-are-getting-rich-on-urine-tests-for-opioid-patients,
$50 per 'front-line' MD visit. 4 visits so far = $200
(NOTE: This is probably higher, this MD has a neat process set up involving himself, an assistant with unknown title, and an MD completing practicum.)
$60 per 'specialist' visit. 1 visit so far.
$?? for consult with in-office allergist. It was an appoint with Dr. Han and the allergist in the same room.
$20 to unknown (CAD) for the simple cup plus charges for storage and staff and shipping, but they aren't using the simple detecting strip according to the paperwork, so I'll say a generously low $100 lab tests.
$25 the minimum the College had to pay for the nice list of MDs they send to us and the person manning email.
$25 to 50 for the phone call, probably more toward 50, but I'll put down $25.
= about $350 taxpayer cost. with at least 2 more MD appointments coming so, a minimum of $450 in 5 weeks of care.
If we were in the US, would it be getting close to cheaper to buy the drugs off the street? I know the care costs would be higher. Not quite yet, I guess. https://www.researchgate.net/post/What_is_the_predictive_value_of_STREET_PRICES_in_determining_potential_for_misuse_of_substances
Time to update more.
We brought up our concerns again to both the office assistant and MD. The MD didn't really listen. Instead he touted the wonders of marijuana and handed us forms. Mark was willing to try it just to move ahead. So, we filled out the forms which had a ton of grammatical errors as well as spelling errors. I asked Mark not to sign because the form basically made us lie, saying that Mark had tried various previous medications and that they had not worked. That isn't true, the opiod is working fine and Mark shows no signs of addiction and his blood work is terrific (run recently due to his diabetes). Mark pointed out that the wording didn't state that all previous therapies had failed, only that some had. I grumbled. So, we didn't go out to meet with our friends, we ate less, and Mark paid the $100. We asked several times what the next step was and what the future costs were. I was quite concerned that we had to use a mail order pharmacist. Mark wasn't at the time.
After being reassured that the marijuana would arrive in the mail along with some Atavan, which is what the hospital would give to him anyway if he started to have an adverse reaction causing anxiety we left the office thinking that it would be 3 days to delivery and NOTHING else had to happen.
Well, turns out the mail order pharmacist didn't receive enough information. The form was missing our address. Next, the mail order pharmacist charges $90 per fill of prescription and NONE of that is covered by health care. We had specifically asked if there were any more payments to be made. The MD lied to us. Oh... and there is no Atavan being sent.
So, now Mark is finally getting upset. What kind of kickback is going on here? Why is the MD pushing this so hard despite clear concerns? At this time we can't really afford to try to marijuana anyway and we just lost $100 in administration fee that shouldn't be charged. There was no patient education; what information was provided was wrong and the administration fee, you'd think at that price you could at least afford an editor. Clearly no lawyer or editor went over it.
Onto the next problem. We were told that CannTrust 18557942266 would be handling the oil delivery and to expect oil in the mail.
Turns out that there are additional costs and we have to order through CannTrust, which is $90 per bottle plus shipping for each bottle, and each bottle is way less than the amount prescribed for a month - plus the bottles being offered don't match the THC amount prescribed, which was pretty much 0%. Then I do some research and CannTrust isn't even allowed to operate in Alberta. Aurora, at first, had to handle all mail order marijuana for the province. Now there are three companies that can sell, but CannTrust is NOT one of them. That leaves one hell of a conundrum, Mark has signed a piece of paper saying he will exclusively use a company that isn't even allowed to operate in the province. Um, what. Kind of glad we couldn't afford it while I try to figure out what we are supposed to do from here.
Article that lays everything out: https://kushtourism.com/alberta-canada-marijuana-information/
List of distributors allowed in the provinces to start: https://kushtourism.com/canadian-medical-marijuana-producer-directory/ (not only Aurora is in the list https://www.auroramj.com/)
Health Canada list for Alberta, note 7 distributors now, but only three for sale: https://www.canada.ca/en/health-canada/services/drugs-medication/cannabis/licensed-producers/authorized-licensed-producers-medical-purposes.html Aurora - both, Acreage Pharms - both, Sundial Growers - both, Alberta Craft Cannabis Inc. - cultivate only, Aurora 2nd facility - cultivate only, Bloom Cultivation Ltd - cultivate only, Boaz Pharmaceuticals Inc. - cultivate only.
Now I have to make a call to Health Canada and find out if we are even allowed to order from these blokes, and if not report the clinic. That'll make Mark super-happy as he really doesn't want to rock the boat. However, I'm not going to stand by while Dr. Han does something that could put his patients at risk, even if it is a small legal risk.
Health Canada claims the website doesn't sat that the seller is limited to selling in their province. At least one thing is working here. CannTrust is OK to deal with.
Next trouble? Insurance will not cover any of the costs for the cannabis. There's an application process for CannTrust though. Also, still no word on what is happening with the Atavan.
Guess we have to make another appointment and go back since the MD is not responding to the email address on his business card.
Well, we are now three more appointments into the future. The cannabis has arrived. I was reading the Alberta Health magazine and it specifically says the cannabis, opioids, and alcohol mixed together are a bad thing. Weird that they would print that and the MD would prescribe exactly that. The Alberta College of Physicians has been helpful. However, Dr. Han is whom he is and hasn't been. This last visit to the MD was to find out why we still don't have the Atavan Mark was supposed to have in case of a negative reaction to the cannabis. Turns out that if Dr. Han had done what he said he would the other MD in the same building thinks things would have gotten much worse as far as psychotic break instead of better.
What a mess. Everything you read says don't do this. Everything we've been pushed to do by Dr. Han has been to do it anyway. The College did offer to stop this nonsense and step in. Unfortunately, that offer came immediately after Dr. Han called Mark in for an emergency appointment and insisted that Mark try the drops soon, finally providing an opiod script for 2 weeks since Mark's scripts are about to run out. Every indication is that Dr. Han talked to the College before Saturday, when we went for the appointment. Yet, the College has specifically asked him not change his practices in general. If I were Mark, I'd be running away from this MD. However, I'm not Mark and I can't make his choices for him. He's going to stay and take the cannabis without accepting the College's generous offer to step in.
As his caregiver, I'm starting to have a panic attack. When something goes wrong; which it is clear to me that it will, how bad will it be?
