Tired of the fight for treatment/DIC & chronic pain

Posted by cb772 @cb772, Oct 7, 2020

Hello, all: Have any of you had an episode of D.I.C. following surgery or another trauma? It's a rare bleeding disorder that has a survival rate of around 15%. I experienced it immediately after my 3rd back surgery in 2007. Since so few people survive, the medical field knows very little about DIC or it's long-term effects. The after effects, plus several failed surgeries that left me with chronic pain in my back & painful neuropathy in both feet, have led to me living in a recliner or wheelchair. Nothing helps and at 67 years old, I'm ready to give up the battle. Doctors don't know how to help & they keep screwing around with my meds. My pain level stays at a 9+, but with 5 to 6 10mg tabs of Norco per day, muscle relaxants & 2 mg of Clonopin daily, the pain number goes down to 7 & I can handle that. In my area of SE Florida, there were pain clinics on every block in the mid 1980s for several years where you could show up & a doctor would ask a couple questions & prescribe whatever you asked for. This legal drug trade went on until the DEA forced the doors shut on thousands of pain clinics, many doctors lost their licenses & Walgreens pharmacies were nearly shut down & could not fill scripts for opioids or anxiety meds for many years. Today, they have very limited supplies & ridiculous restrictive rules on dispensing opioids. Pain clinics push useless (for me) shots & conservative non-opiod treatments. At 67, I should be able to get the meds I know work for me, but I can't. The anxiety & depression are overwhelming. I really don't care if it's dangerous to take Benzies & opioids together. I've taken them for years exactly as prescribed & was able to live life instead of just existing. The DIC has left me with slowed responses, stuttering, jello-like legs & body leading to many falls. I was laid up last year with a severely broken ankle & torn tendon requiring 2 surgeries. After 7 months in a non-weight bearing cast, I was able to start P.T. but 3 weeks later another fall broke all the bones on the top of the same foot & was back in a non-weight bearing boot for 4 months. This started on January 23rd, 2019 & lasted till November, 2019. I continue to have lots of falls & recently broke a bone near my little toe, but I didn't get treatment for it because, like I said, I'm tired of the battle & life. Thanks for "listening".

Good plan. I think you'd be surprised at how many people never read the literature with their Rxs.

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Hi @cb772 I thought I'd take a moment to check in. It's been a few days since you last posted. How are you doing?

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@lioness

@treziesmom Im so sorry for you loss . I loss my oldest and best advisor brother in 2013 It is a devastating feeling I know but you will get through it . I do alot of holistic health instead of relying on Dr,s and perscriptions altho as I age it is inevitable I guess. Most of the exercise, Tai Chi and walking outdoors keeps me sane .

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I've also tried many holistic treatments, but none worked very well. Walking & yoga are great if you can do them. Unfortunately, my pain & the long term effects of DIC prevent me from walking, let alone yoga. I was an independent, active (gym workouts, dancing, walking), confident woman in a career I loved. Now, I'm dependent, lack confidence, have no sense of self worth, etc. I believe, for my symptoms, it's all related to the DIC I suffered following my 3rd low back surgery. DIC is rare & only a small percentage survive. I guess that's why there aren't any doctors who have studied long term effects. I'd be happy to be a test subject for any doctor who wants to study it.

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What is DIC? So sorry for all your pain. I am in a lot pain myself and I sympathize. Thank you.

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@cb772

I've also tried many holistic treatments, but none worked very well. Walking & yoga are great if you can do them. Unfortunately, my pain & the long term effects of DIC prevent me from walking, let alone yoga. I was an independent, active (gym workouts, dancing, walking), confident woman in a career I loved. Now, I'm dependent, lack confidence, have no sense of self worth, etc. I believe, for my symptoms, it's all related to the DIC I suffered following my 3rd low back surgery. DIC is rare & only a small percentage survive. I guess that's why there aren't any doctors who have studied long term effects. I'd be happy to be a test subject for any doctor who wants to study it.

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@cb772
You are in my thoughts dear. I am so so sorry you suffer so much. Life has dealt you a terrible hand. May I ask, do you find any solace in spirituality? I know that it is either there for a person or not. It can be a rock if you have it as your center. It does nothing for you if you do not have faith. And no one can give you faith, it's only found within. I feel great sadness when I read your posts. I know I am not the only one ever to say that if I had the power to remove pain from those like you I would do it immediately. Best, Hank

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@jesfactsmon Thank you for your response! I am a Christian and my faith is what I rely on daily. I'll admit that I have considered ending it all, but I really want to go to heaven and breaking one of 10 Commandments probably won't get me there. Again, thanks so much for being so compassionate.

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@wheelerma

What is DIC? So sorry for all your pain. I am in a lot pain myself and I sympathize. Thank you.

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@wheelerma DIC stands for Disseminated Intravascular Coagulation. Mine was the result of a 3rd back surgery in 2007. I'm so sorry you're in pain.

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@cb772

@jesfactsmon Thank you for your response! I am a Christian and my faith is what I rely on daily. I'll admit that I have considered ending it all, but I really want to go to heaven and breaking one of 10 Commandments probably won't get me there. Again, thanks so much for being so compassionate.

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@cb772
Carol, one question I don't know if you have spoken of before, but have you already tried any of the alternative pain aids such as cannabis and kratom? Just wondering if they might bring some relief to you, at least cut your hideously high pain level a few points.

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@cb772

@jesfactsmon Thank you for your response! I am a Christian and my faith is what I rely on daily. I'll admit that I have considered ending it all, but I really want to go to heaven and breaking one of 10 Commandments probably won't get me there. Again, thanks so much for being so compassionate.

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I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of the spinal meninges that progresses to nerve clumping and scarring. (Usually caused by surgery or injections). Very severe pain and disability. Next surgeon did bogus tethered cord surgery and stabilization. My pelvis tilted, had to have hip replacement, which was done wrong and resulted in hip instability. Took two years to find honest ortho who would diagnose and do revision. I fell many times, which caused AA to be worse. Developed severe spinal stenosis during the period which also made AA worse. Medical field tries to pretend arachnoiditis isn't real since it is iatrogenic in most cases, therefore, I wasn't given diagnosis until 2018 after having surgery for stenosis. Losing more muscles in lower extremities day by day, getting more and more difficult to walk. Bladder, bowel issues, chronic fatigue, immune system dysfunction, headaches due to spinal fluid flow obstruction, 75% reduced kidney function, very severe anal pain that is exacerbated by movement. Opioids no longer help, I think bc spinal stenosis made scarring and clumping worse. Pain pump doesn't help either. One neurosurgeon said to take drug holiday. Pain doctor wouldn't do a trial of ziconotide or prescribe ketorolac and dexamethasone to reduce inflammation. I explained time and again that the high dose opioids weren't helping, but clinic kept giving me same meds. I finally tapered off pills and patches and asked doctor to put saline in pump. He would only reduce pump meds from 8 mg to 1 mg. Said he didn't believe in tolerance and hyperalgesia, which I definitely had. Three days after this appt I received letter stating they had decided on dismissal. Guess AA was too much of a problem for this lazy doctor. Looking into umbilical stem cells out of country, but there is no guarantee. Had to drive three hours one way to find neurosurgeon who manages Flowonix pumps. Flowonix pumps are relatively uncommon but my doctor didn't give me a choice between Medtronics bc he is friends with the Flowonix rep. Neurosurgeon is reducing meds VERY VERY slowly. He originally talked like he would put saline in pump very soon, but it's been four months now. Money thing, maybe, but I want opioids out of my system bc they provide ZERO relief. Most nights I can't sleep until 3-4 AM because of anal burning/throbbing. I think about suicide a lot, which is another reason I need to be opioid free. It is always in the back of my mind though that I will end up in hell if I kill myself, and it bothers me that so many people kill themselves for stupid unnecessary reasons. Early on when pain meds still worked I took 1 mg benzos. This helped as much as pain meds and I don't know why they make such a big deal about them if the patient is alert and breathing normally. Maybe they are afraid of being sued by family is something happened. I have noticed a pattern in my pain management records, with the exception of the first one where I went for the first five years. They seem to begin early on fabricating documentation to make me sound like a problem patient in case they need something to use against me later on. Every word is twisted and things are put in quotation marks that I did not say. It is terrible to be dependent upon these evil people for anything, let alone pain relief.

Hope you find some treatment that helps.

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@jelizabeth

I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of the spinal meninges that progresses to nerve clumping and scarring. (Usually caused by surgery or injections). Very severe pain and disability. Next surgeon did bogus tethered cord surgery and stabilization. My pelvis tilted, had to have hip replacement, which was done wrong and resulted in hip instability. Took two years to find honest ortho who would diagnose and do revision. I fell many times, which caused AA to be worse. Developed severe spinal stenosis during the period which also made AA worse. Medical field tries to pretend arachnoiditis isn't real since it is iatrogenic in most cases, therefore, I wasn't given diagnosis until 2018 after having surgery for stenosis. Losing more muscles in lower extremities day by day, getting more and more difficult to walk. Bladder, bowel issues, chronic fatigue, immune system dysfunction, headaches due to spinal fluid flow obstruction, 75% reduced kidney function, very severe anal pain that is exacerbated by movement. Opioids no longer help, I think bc spinal stenosis made scarring and clumping worse. Pain pump doesn't help either. One neurosurgeon said to take drug holiday. Pain doctor wouldn't do a trial of ziconotide or prescribe ketorolac and dexamethasone to reduce inflammation. I explained time and again that the high dose opioids weren't helping, but clinic kept giving me same meds. I finally tapered off pills and patches and asked doctor to put saline in pump. He would only reduce pump meds from 8 mg to 1 mg. Said he didn't believe in tolerance and hyperalgesia, which I definitely had. Three days after this appt I received letter stating they had decided on dismissal. Guess AA was too much of a problem for this lazy doctor. Looking into umbilical stem cells out of country, but there is no guarantee. Had to drive three hours one way to find neurosurgeon who manages Flowonix pumps. Flowonix pumps are relatively uncommon but my doctor didn't give me a choice between Medtronics bc he is friends with the Flowonix rep. Neurosurgeon is reducing meds VERY VERY slowly. He originally talked like he would put saline in pump very soon, but it's been four months now. Money thing, maybe, but I want opioids out of my system bc they provide ZERO relief. Most nights I can't sleep until 3-4 AM because of anal burning/throbbing. I think about suicide a lot, which is another reason I need to be opioid free. It is always in the back of my mind though that I will end up in hell if I kill myself, and it bothers me that so many people kill themselves for stupid unnecessary reasons. Early on when pain meds still worked I took 1 mg benzos. This helped as much as pain meds and I don't know why they make such a big deal about them if the patient is alert and breathing normally. Maybe they are afraid of being sued by family is something happened. I have noticed a pattern in my pain management records, with the exception of the first one where I went for the first five years. They seem to begin early on fabricating documentation to make me sound like a problem patient in case they need something to use against me later on. Every word is twisted and things are put in quotation marks that I did not say. It is terrible to be dependent upon these evil people for anything, let alone pain relief.

Hope you find some treatment that helps.

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@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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@jesfactsmon

@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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Me too. Life is hard. Death shouldn't have to be. Assisted suicide should be a right for those suffering chronically

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@jesfactsmon

@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank

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Thanks for your kind words.

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