Could synthetic Botox soothe chronic pain? A new study holds out the possibility

https://www.statnews.com/2018/07/18/botox-chronic-pain-mice/

This is a dangerous injection spot. I hope that it will advance. I’d much prefer they not be testing on mice. 😦

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So Much Misdiagnosis

When it pertains to your health, you are bound to be misdiagnosed multiple times over the duration of your life. According to books with hard statistics, women are far more likely to receive a misdiagnosis than our male counterparts. It makes me question the medical field on a whole, and Lord knows I’ve been doing that for quite some time already. I am not offering up trust at the moment. I have exactly two doctors I trust to care for me properly, and no one should have such low numbers when they need help.

When I was diagnosed roughly fifteen years ago with “inoperable spinal damage between C-3 and C-7” (that’s five disks in total) in my neck that was “pressing on the nerves going in and out of my spine”, thus causing the excruciating pain I am still in, I was stunned. At the time, I didn’t know much about the internal aspects of the spine. Obviously I was well aware one could injure themselves and that you could become permanently paralyzed through no fault of your own, but I wasn’t up on the medical lingo. Until that day, my back and neck were simply an every day part of my body, albeit parts that hurt like hell. Now, all these years later, I am far more educated on the ins and outs. So when I met my current spine specialist in January, I had to report the information I had previously been given. Instead of requesting those records, he ordered an MRI. We both had to put up a fight to get it approved, and once it was, I was thrown into the difficult position of completely changing my insurance just days before a doctor’s appointment. That meant getting the MRI approved through the new insurance company, and I was prepared for yet another battle. However, they approved it immediately. Unfortunately, I did not receive a letter regarding the approval until about six or seven weeks later. There was no way in hell I was getting into an MRI machine when I didn’t have the approval in hand. Call me crazy, but I didn’t want to see an enormous bill for this MRI over a missing document with the approval on it. I’ve seen this happen to people, and I can’t afford to be stupid.

I had the MRI done on June 13th. It was quick, painless, and frankly, not worth the months of built-up anxiety for twenty minutes of my life. When I saw my doctor to go over the results, I was shocked silent to hear that my neck “looks great”. I said “Excuse me?” and he replied by saying that the damage I previously had “probably healed over time”. I stared at him and said “Why didn’t anyone ever tell me that could happen? And why am I still in so much damn pain?” He shrugged and then pulled up the images to show me how perfectly straight my spine is (Thank you for all your lectures about perfect posture, Grandma. I can still hear your voice whenever I don’t sit up straight.). However, this “perfectly straight spine” isn’t normal. Most people have a curve to their spine. So while I have the curve aesthetically, if you’re looking at the back of my neck, internally, it is straight. My diagnosis? Arthritis. It was a genuine “What the fuck?” moment from beginning to end. I’m in excruciating pain and he’s sitting across from me telling me that my disks are perfect and well hydrated, and even said “You have the spine of a thirty year old.”  I have anti-aging bones to match the genetic fact that I also look far younger than I am. Awesome! <I’m rolling my eyes, and being slightly sarcastic.> He noticed that there’s a lot of tension in my upper back/neck area, which he says is where most people store tension. I know my back and neck bear the brunt of a lot of my stress. He looked at my medication history and suggested Trigger Point Injections and referred me to a colleague for Biofeedback. When he discussed meditation and “lowering my stress levels” I said “Hello, have we met?!”, which was apparently confusing for him, so I had to explain my stance on things that haven’t worked for me in the past. I was given an appointment for the TPIs, and left his office feeling dejected beyond words.

I then went downstairs to the lab and submitted to a random drug test for medication I’ve never abused in my life. Let’s be frank when I say I have never abused ANY prescription drug. In fact, I am the last person anyone would ever accuse of having a substance abuse problem, but I did it to reassure my doctor that nothing has changed, just in case her records are audited. With the serious decline I have received in treatment these last few months, that could be sooner rather than later.

My doctor has systematically, over the course of two months, cut my medication down by roughly 80%. It is not for pain, it is not something I can “get high” on, and again, I’m not abusing it. Once my test came back, she wrote me a prescription for 33 pills. My normal monthly dose is 180 pills, and I only ever take them as needed. She has a doctor who oversees the controlled substances in her office. I was supposed to meet with this psycho (You’ll have to trust my assessment here. There’s nothing sane or normal about this woman.) for the second time, but she chose to cancel on me without giving me twenty-four hours notice. Her secretary had the audacity to inform me that I may receive a bull for HER cancelling on ME. If I receive an $80 bill from her office, she had better HIDE off the fucking grid because hunting her down like a rodent will become my new mission in life, right after I report her for fraudulent billing practices. She has her secretary call me to cancel and actually says “Tell her she can stop by Wednesday or Thursday.” Like I have nothing else going on in my life? I wanted to say “Please tell her to go fuck herself.”, but instead I said “I am booked for the next two weeks. I can see her July 3rd.” I intentionally chose this date because I am a bit of an evil genius who, now that I know who I am dealing with, has decided to be as challenging as possible. Her secretary gives me an appointment, after saying she has several other patients before me on the same day and then adds, “I don’t know if she’ll be in, it’s a holiday week.” July 4th is on Wednesday, if she’s planning on not being in the office, then I’d better not receive six confirmation e-mails like I did for the cancelled appointment. I intentionally ignore these e-mails and any text messages asking me to confirm so that they have no paper trail of confirmations or cancellations from me. I will be calling on Friday to confirm because I want to record the confirmation call. If she cancels again, my doctor is going to hear about it because I’m the one being punished by having my medication reduced each time it is renewed, and if I get the call on Monday, she had better be prepared to write a new prescription on Tuesday when she’s in the office, or have a colleague do it. If this was going to be an issue, she should have said something to me directly when she saw me at the end of March. Instead, she chose to say other things and there was no discussion regarding this topic.

The drug in question is a well known anti-anxiety medication (It’s not Xanax.). There are major health risks involved if I am not slowly weaned off of it over a two to three year period. If I should have a seizure, heart attack, or stroke due to this rapid reduction in medication, this particular doctor is the first person I am authorizing my family to sue the living crap out of (I’ve already told two family members about the situation, just in case.). I have even had my insurance company call them and warn them that this is both negligence and medical malpractice. They have been advocating for me due to communication issues where my calls don’t get returned for 5-7 weeks at a time, as opposed to the same day. I am trying so hard to focus on my health and get everything straightened out, and this office is constantly doing something to piss me off. Even the insurance company has said “I’m playing phone tag with the nurse who works for your doctor. I understand your frustration in being ignored because I call several times a week, too.” They want to get paid by my insurance company, but they can’t return a phone call in a timely fashion? Frustration is not the word I would use at this stage. Especially knowing that they just billed nearly $2000 for a drug test, my third this year. I expect my insurance to cut them off from further testing at some point, especially since they fork over $1800 each time. There are companies who wouldn’t pay $300 for this constant bullshit, but obviously they have an agreement regarding this. It’s absolutely ludicrous. There is no fool-proof way for my tests to be accurate. The first one was positive for the medication I take. The second was negative, but my sample was also disposed of after it reached the four hour mark, so I don’t know why it was reported at all if they disposed of it. The third was positive. It doesn’t get sent out to a special lab for analysis, it’s merely someone dipping a stick into the sample and then submitting a report back to the doctor. There’s nothing precise about it since the tests declare that they can be inaccurate since they are not set up for this type of medication. It actually lists about ten medications and says it cannot guarantee accuracy for them.

Being medically strung along does not make me feel comfortable or safe. It does not foster trust. It took my regular doctor seven weeks to change a medication for a serious health issue, and have someone call me in regard to it. Seven fucking weeks! I am now forced with calling back and saying “The new medication made me deathly ill. Please change it.” How long will it take her to change it at this stage is anyone’s guess.

So, as I navigate all of this, I’m also struck by the annoyance that the medication in the Trigger Point Injections wasn’t even explained to me. I spoke with someone and did a little research, only to find out it’s basically steroids, anesthesia, and a muscle relaxer. He did say that if it worked at all, it would last about two weeks. Due to a new-to-me medication I am getting from my neurologist (I will probably talk about this next year. I am, intentionally, being tight-lipped about it because I want to see if it’s going to work or not.), I had to ask her if it’s safe to have the injections. She gave the green-light, but I still don’t feel comfortable jumping into it. He never addressed the issues with my lower back, and during the physical exam, when he pressed on my spine, I nearly flew across the room when he hit my lower lumbar area, yet he did not order tests or answer my questions about it regarding pain. That’s going to bug me, and as a result, I have decided to get a second opinion. I do have an appointment for the injections at the end of July, but this is still MY health, MY body, and if I don’t feel 100% comfortable, then it’s okay to admit it and it’s okay to have someone else take a look. I have my x-ray report, I have the MRI images on CD, so asking for a referral to another spine specialist  is being fair to myself. I like this doctor, but that doesn’t mean a whole lot since we went from “I can prescribe something.” to “Let’s start injections ASAP.” Overall, he IS an anesthesiolgist and what do they do in pain clinics? They perform injections all day long. I’ve never been under any form of anesthesia in my life, and if I can avoid that going into my body, I will. Obviously, if the other doctor is on the same page, maybe he or she will better explain their perspective, but that doesn’t mean I have to agree to their methods. This doctor and his needles will still be available to me, if I choose that route, but for now, I would like to see what alternatives are out there. Pain management shouldn’t immediately fall under “anesthesia” and needles. At least not from where I am sitting, as the one in pain.

I am hoping and praying I get real answers soon. For now, I’m going to listen to my intuition and get a second opinion. Possibly even a third, if necessary. There’s something telling me that I need to dig deeper, and I can’t ignore that voice.

I’ll be back soon. Make sure you have fun without me. 😉

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

Fighting Your Internal Dialogue

Hello everyone! I hope you’re all doing well. I’m not going to lie; today was a rough one. 😦

I made an appointment sometime last month to meet with a spine specialist (read: anesthesiologist). My new doctor had asked me to meet with the in-house substance abuse doctor as well, so she could prescribe the one controlled substance I take, until I find a new doctor who would then take the prescribing duties on full-time. She said “You only have to meet her once.” I don’t know what my face looked like when she dropped that bombshell on me, but she tried to reassure me that this is merely procedure. I was okay with that. However, after today I can tell you that once was ENOUGH. I physically had to keep myself in my seat, choose my words carefully, and fight my own body so I wouldn’t lean over her desk and punch her in the face. Yeah, it was one of THOSE days. I am going to be seeing red for a while.

My day started out stressful. I didn’t get a lot of sleep, and I’d fasted for blood work, so I was functioning on next to nothing. No amount of water makes up for the fact that you feel weak and dizzy by the time you get to the lab, because at that point it had been well over twelve hours and if I don’t eat, I will inevitably get a migraine.

I arrived at my first appointment of the day; the spine specialist. I’d read his reviews in advance and was very mixed going into this appointment, but decided to keep an open mind and hear him out. I am happy to report that he was one of the nicest doctors I’ve ever met. How often do I say that? Almost never.

He took notes, did a physical examination of my spine, was very careful with my neck because the range of motion is poor, and he agreed that I definitely have weakness on the left side of my body. Before he made any decisions he turned to me and said “Do you WANT an MRI?” He told me “I will never order a test or force a treatment on you that you don’t agree with.” I thought my jaw might hit the floor from the kind, respectful treatment, but I remained in check. We agreed on the MRI, and he even ordered an open MRI so I won’t have to deal with any potential claustrophobia, which I experienced during my last few MRIs. Generally, I am not claustrophobic at all, but I felt he should know about it, just in case. He then said “Go when you’re ready, they’ll send me the results, and we’ll follow-up then.” Non-aggressive, highly respectful, and extremely laid back. I walked out and said “The doctor was LOVELY.” I don’t usually say things like that, but in this case, it was true.

We did talk about injections, which I am against, and he said “There might be some medications we could try again at different doses.” and he even said he might refer me out, depending on the results of the updated MRI. He doesn’t think an epidural in my neck would help with the pain that travels down my spine, into my left arm and leg. He believes they are two separate issues, but is wondering if I have a narrowing of my spine, which is highly possible. I remember my mother having it, but I shouldn’t have it this young. He looked at my x-ray results and explained that where the technician said, in the reports, that I had a muscle spasm or a shadow in my spine in two different areas, it was likely just my body’s natural response to being in so much pain for so long. He said it was probably residual tension, as opposed to an actual spasm. I inquired about a steroid pack, because so many people have suggested this to me, and he said he doesn’t think they would help because I’ve suffered for so long, or he would have prescribed it immediately.

I left his office feeling positive, mostly because the appointment went well and I was treated like a human-being, which is always a shock. Because I had a little less than two hours to kill in between appointments, I went downstairs to the lab. That took longer than my consult with the doctor, but I was already there and it wasn’t that big a deal. Four vials of blood and I was out of there. Most of the tests are similar to what I had done last May, except this time, my doctor will be calling me with the results because she actually gives a damn about her patients. I am concerned about one of the tests, but here’s hoping it’s normal. I will say the lab tech did a great job, because I don’t have a bruise the size of my hand on my left forearm. I still bruised right away, but it’s small enough that I’m not concerned. I’ll use some Arnica on it until it heals. The last one took a long time to heal and it was hideous.

When the “substance abuse” doctor was ready to see me, I immediately knew where things were headed. Doctors really ought to be more careful with their approach to patients they’ve never met and do not know. One day, behavior like hers will result in someone taking action. That may seem sad, but it’s the truth. I am not going to sugar-coat this woman’s behavior.

I was drug-tested for the first time in my life, and told to leave the test in a public restroom. Yeah, because that seems smart! I was outraged by this. As anyone who has ever had a urinalysis knows, those things are not sealed. Anyone could have gone into that bathroom after me and done G-d knows what with the test. This is a test that they bill approximately $1100-$1700 to the insurance company for, which is INSANE because you can buy them over-the-counter at Walgreens. Because I had fasted for the lab work, and had already gone to the bathroom ahead of seeing her, there wasn’t much for her to work with, providing they don’t call me tomorrow to tell me my test is missing or needs to be redone. Downstairs, in the lab, they had to call a woman who’d been there earlier in the morning to say she needed to come back and have hers redone. The entire office heard this phone call, there was nothing private about this person’s medical information, and that’s a blatant violation. Whatever did or didn’t happen with her test is an epic screw-up from where I’m sitting. If they fucked up mine, I REFUSE to go back there for a drug test. They can bite me. I’m surprised she didn’t also ask for a cheek swab, a hair sample, and DNA. DO NOT read this and say “Lisa, she’s just doing her job.” There is a correct way to do this job, and that does not involve making law-abiding citizens feel like they’re doing something wrong by following a doctor’s instructions where a prescription is concerned.

When I returned to her office, she had no idea why I was there, asked if we’d met before, couldn’t find my file, and then proceeded with a list of questions my own mother (G-d Rest and Bless Her Soul) would not have asked me in a million years.

I was asked approximately six times if I use marijuana or cocaine. I’m sitting there trying not to roll my eyes as I give her the same answer each time; NO. Is this person forgetful or fucking testing me? I don’t care, because the answer is no, and the drug test will prove it.

To my face I was, once again, told I was an addict. I’m not, and because I have known addicts and been around addiction, I do know the difference. I can spot it in other people. I have responsibly taken medication that I assure you, is the ONLY reason I did not knock this bitch out. That and learning how to rein my temper in slowly.

It’s one thing to be doing your job with the questions, that’s fine, but it’s a whole other ballgame when you ask me to relive the worst trauma of my life because you don’t understand why I have a specific diagnosis (to which I nearly said “Talk to the fucking treating physician! Don’t repeat that question again.”), repeatedly ask the same fucking questions as if the answer is suddenly going to change, and demand to know where my doctor’s notes are. I cannot see what you’re looking at behind the desk/computer, so my answer was very nearly “Beats the shit out of me!” Instead I said “I can’t access them, either. Your guess is as good as mine. Would you like his phone number?” When I give someone professional, cold answers, it is a WARNING. Apparently, this woman did not see the red fucking flag waved in front of her face, and kept pushing.

“Do you drink coffee?” she suddenly asks me. I live a mostly caffeine-free life because of my migraines, but for the past few weeks I have been drinking coffee at all hours. Maybe a cup a day, sometimes two, but I’m not sucking down gallons of the stuff. She should take the psychoanalysis to the local Starbucks, because rest assured, caffeine is not an “addiction” for me. It’s something I’m drinking because I like the taste. I don’t have it behind me in an IV.

“Do you smoke?” No. “Do you drink alcohol?” No. “Is there a reason you don’t drink alcohol?” Mind you, the spine specialist asked me these questions earlier in the day, except when I replied no, each time, he said “That’s great.” and only when I said I don’t drink did he ask if there was a specific reason for that, and quickly asked if I was pregnant. Light, calm tone, no rudeness or insinuations. Not from her, though. She’s a first class bitch, in all caps.

She aggressively pushed every last button I had, until I thought about the one person on this planet who keeps me calm and grounded, and I told myself “This office is small and you could strangle her and/or rip her fucking throat out in less than thirty seconds, but it’s not worth it. Let it go.” When you’re fighting with your internal dialogue, it’s not always a good thing. My creative process on murder astounds me. I’m only half-kidding, but no one needs to worry.

I had already answered her questions regarding my diagnosis of Complex-PTSD and where it potentially stems from, so when she asked where my parents lived, that was IT. I knew she was intentionally trying to break me, because she desperately wanted to know if I am an addict. She has reached the point where she cannot tell the difference between a patient and an addict, two very different beasts. I should have informed her that there is an immense difference between patients and addicts, and that I don’t appreciate her aggressive behavior, but I knew she would go back to my doctor and say I was a combative addict, or whatever she chooses to say in order to appease herself.

When she told me it wouldn’t take 2-3 years for me to be taken off this medication, I nearly laughed in her face. My doctor told me it WOULD take 2-3 years to safely take me off of this medication in order to put me on something else, something safer. He was concerned about seizures and other side effects that I have only been made aware of in the past four or five years, and he felt that I wasn’t ready to begin tapering because of all that I am going through, both health-wise and emotionally. He’s right, and I stand by what he said to me. Here she is though, suddenly telling me I can be detoxed off of this quickly (NOT true. Yanking me off this medication could kill me, and it does kill people when it’s not done properly.) and that forty or fifty years from now, this medication MIGHT  cause dementia. I wanted to say “I probably won’t live that long and quite frankly, I am NOT going to worry about what ‘could cause dementia or ‘might cause dementia’. Are you SURE you went to medical school?” I know people who take medication to improve their quality of life and that’s all this medication does for me, albeit not that well any more. From a medical perspective, it IS a high dose, but I’ve always been responsible with how I take it.

In June, my doctor asked me to start taking smaller doses, whenever possible, and I have done that. I am two months behind on my prescription and I still have enough medication for a few weeks. Instead of seeing this as a responsible thing, which is exactly what it is, this bitch took issue with that because she cannot understand what he said to me, because she can’t find his notes, and why I am being responsible and discerning with it. This didn’t sit right with her majesty.

She finally told me she will talk to my doctors and “figure something out”. She had about a hundred case files on her desk and as she desperately searched for mine, there wasn’t one. I suspect it’s because I am NOT a red flag to my doctor, who was a sweetheart to me and said she has no problem prescribing it, so long as this other doctor approves me. I don’t know if she will.

When I got home, I had to contact one of my doctors who she said she wanted to speak to. She does not have authorization to do so, because I didn’t sign a consent form, but I wanted this doctor to know, just in case. I didn’t want her to be side-swiped by this woman. She is the physical embodiment of a drive-by shooting, with all the subtly.

When she complained about the doctor who left, and not having his notes and diagnoses, I told her “This is where he works now. I’m sure you can find him.” She suddenly decided I need a “case manager” to get me in to see someone. Here’s a fact; I am NOT special. There is a LONG waiting list to be seen by so many specialists, and no one is going to move me up the list “just because”. I called before Thanksgiving to get an appointment with a migraine specialist and just last week, they told me I could be seen…at the end of May. I’m lucky they didn’t say “in 2019” after they said May. So, despite it being something I’d normally bitch about, I simply took the appointment and the receptionist promised she’d call me if there were any cancellations so I could get in sooner, after apologizing for twenty minutes because no one ever returned my call. The doctor has a five star rating which is the highest you can give a doctor, so I hope she’ll be able to help me.

Chronic pain patients put up with a LOT of crap. For me, this was unnecessary drama that raised my blood pressure to the point of a migraine. The sad thing is, I would have received more kindness, compassion, and far better treatment if I had walked in with track marks and an active addiction that was visible. Instead, I walked in with flawless makeup (It’s force of habit, I’m not trying to impress any one.), dressed like a normal person, and once again, I was judged for that. It’s NOT acceptable and it’s NOT okay.

When I told a family member that I wanted to talk to my primary care doctor about how this woman treated me, I received a lecture about how it’s “her job to ask questions like that, it’s all a form”. Yes, it’s her job to determine who is an addict and who is not, but no matter what I did, this woman was determined to find fault with me. I was waiting for Homeland Security to be on hand as I left for a fucking cavity search! I’ve never had anyone tell me, after a medical appointment, to “Just leave, go out.” I wouldn’t talk to a dog like that!

I don’t want to live in a society where patients are treated like dirt for taking necessary prescription medication, which means they’re smart enough to know something is wrong and seek treatment for whatever ails them, and addicts are being accommodated for choosing to use street drugs. The message this sends to patients is a horrible one, indeed. If I didn’t suffer terribly every single day of my life, I would throw all the prescriptions I have in the trash. We ALL would. Pharmaceutical companies would be out of business, or would have to look for other ways to make money. What would happen to pharmacies if, suddenly, we were all healthy? It’s an amazing idea, for a dystopian novel. In the real world, illness exists. No one asks for it.

When a doctor is annoyed because you don’t drink, smoke, or do drugs of any kind, that is your sign that something is wrong with them. It’s not you. Every other doctor I’ve met has noted those things as positive. Not her, because she is determined that everyone she meets is an addict of some kind. As she judgmentally sips her tea.

To make sure it wasn’t my imagination, I went and read her reviews. She has a one and a half star rating, which is basically unheard of, but I am glad I saw it because it validated me. The review that is posted, before my own, states that “She should have her medical license revoked because she is a real piece of shit.”, and that was merely the end of the lengthy review that was a mere glimpse at my own interaction with her. This person states they were repeatedly asked the same questions I was, and that they were also threatened by her. To add insult to injury, this is an award-winning doctor! I have NO idea how that’s even possible, but if she fucks with my medication and my health, she is just another doctor whose unprofessional, aggressive behavior is something I will happily report to the state licensing board. She seems incredibly overworked and I’d like to provide her with a permanent vacation.

There are great doctors out there, and I will always honor one with a great review and my full respect, but there are also bottom feeders that make you sick to your stomach. I encourage you to read reviews whenever possible, and I encourage you to write reviews, for the good and the bad. More often than not, it’s the doctor, NOT you.

Patients with chronic illnesses are still PATIENTS. We don’t deserve to be treated like garbage simply because a doctor assumes we’re all secretly addicts. I am shaking my head tonight, knowing in my heart that I didn’t do anything wrong.

Stay safe, smart, and warm, my lovely readers. And if you’ve ever experienced anything like this, I want you to know I stand behind you, and with you. 

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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