Spinal cord disease- near 40 years- cut off of low dose opioids- declining after one year doctors afraid, underlings deflect, lie. What to do?

[Spidey]

Hello!
Have spinal cord disease called Chemically Induced Adhesive Arachnoiditis of spinal cord- for forty years I am still with you. A defective Metrizamide radiopaque altered my cerebrospinal fluid for life.

It took about 14 years for VA to grant benefits, treatment, owing to a Spinal Cord Injury Service unit doing the tests instead of discriminating.  I got 100percent.  They prescribed a rather high amount of pain meds- had already taken (in 1997) gallons of NSAIDS.  Had tried all the other things.  It is inoperable. 

For 18 more years, learned to refine (lower) medications and also moved back to the troubled V.A. region of my home town- and things changed dramatically- as if they did not respect the VA courts, the VA specialists, the documents, or were defending against (nonexistent) lawsuit.  Still, they continued the medications including opioids and other palliative meds for about 17 years.

A year ago, with the FENTANYL crisis renamed the OPIOID CRISIS, I was told I should ...just watch the news... as to why I was being taken off low dose opioids (as I had self-decreased, learning what works over the decades, was doing the best ever since inservice teenager).  The V.A. CBOC (clinic) said they were unqualified to treat pain (a joke- had been treating for decades) and referred me without choice into the Choice Program where months passed without any help, into an appointment with a pit stained NON DOCTOR who wanted to put electrodes near my spinal cord.   I was explained to (but I was dumb) they were DEFLECTING and used that term.

Problem. Doctors injure me repeatedly since 1980 because they don't look into the actual disease. I can count them off.  No safe approach to spinal cord, even outside, owing to adhesions (scar tissue). Scars do not dissolve any more.  I caught Mr Non Doctor in lies like ...Hey, I treat hundreds of patients with arachnoiditis... but there are not hundreds of patients with it in the whole  USA. I have lived through many pop movements in Medicine, least harm by avoiding them.

A year passed without opioids to be SURE it was best to continue as long prescribed and last week, decided I had declined severely enough to KNOW FOR SURE it was best to have the pain control help.  It is the difference between being immobile, declining, and getting something done, ro some activity, each day- strengthening.

My current request for return to low dose opioids triggered the very recognizable same game, deflect, delay, dissuade, deny, make the veteran go away.  Could not get a message to PCP doctor- just gets routed to an underling.  Underling says ...Unless y0u are dying of cancer, we do not prescribe pain meds- I disproved him in one call (To SCI-D unit).  I told him palliative care is what is done if no treatment for a severe pain condition.  He tells me ...We did not treat you for palliative purposes- palliative means you are dying.  This is blatantly a lie.

So, I sense, from decades of experience, a familiar, mighty, brick wall of defense, The CBOC (local clinic) staff made clear they were unhappy I called the White House hotline to get a timely cardiac stress test and MRI to show the changes in the spinal cord two years back.  Eventually, I got the test and MRI and a phone call- and no paperwork sent nor allowed- ...Yah, heart is fine.   Yah, ya got a lil problem with your back.. (like saying Hiroshima had a lil fire cracker popped over it).

The underlings are expert in interpreting facts to suit their arrogance.  They have no need to merely look at the medical records and decisions even when I hand them to them.

I am convinced digital records systems means local jerks can poison others with their arrogance, their ability to ignore reality, expert findings.  The SCI-D Seattle people were supposed to call or inform me if I QUALIFY for SCI-D (Spinal cord injury or dysfunction- I am the latter).  The same game seems in play- deflect, delay, dissuade, deny, then forget and let the vet start over- this is the game of the local CBOC for some ten years (since I started anew to find if any medical advances to the spinal cord problem- this forces them to either note a doctor caused (defective metrizamide injection to spinal cord)- 1980- disease or JUST HIDE.  They just hide using delay.  This is the M.O. of much but NOT all of VA.

Frankly, am mostly in a recliner now, fear the change in spinal cord fluid (cannot dissolve neurons, glial cell defect) means the disease has worked up to neck- have all these arm, wrist, burning pains now the norm- The lower extremities hurt but in a dulled way now. All this pain, worse with activity, surely affects my fear of going out, going to doctor, and aversion to pain from (for example) going to get groceries.   Will have bowel, bladder, other, changes for days, but not for sure.  This indicates a very touchy situation, easy injury. Admit a certain psychological underlay at this juncture- not afraid to leave home, but still stuck at home.  Afraid of doctors so expert in hiding, novices or underlines so confidently lying or (at best) guessing like crazy.  The underlings PLAINLY replace access to the doctor as if I were a convict and they were the guards.  (I've been in no trouble, not accused, just an inconvenient reality they don't choose to take account of)

Conclusion.  Low dose oxycodone was long indicated by doctors for a daily pain break that works- particularly well when weaned off NSAIDS, weed, and everything else.  My life was doing the best ever a year ago- just when they pulled the rug out from under me.  By recording all calls, keeping every scrap since (about) 2002, I can prove what I say- they (Local VA) expertly try to discourage participation in their CBOC clinic- but small town hospital is not well suited for complex neurological problems.  Moving (my goal) involves a lot of pain, selling home, doing what I cannot really do- with or without pain management.

Can anyone provide insight as to how to make the blind see, the mean soften their harsh ways, the linebackers blocking me from access make a hole?

THanks for any tips- am old enough to say organs below the lungs all have problems now, got compensation for that- but VA, PVA, has no record, I do get the annual notice as we all do of compensation but it does not itemize, so I cannot prove what is known. 

It SEEMS LIKE moving back to my hometown returned me to the same pointed uselessness experienced from 1981-1990, which changed by moving to So California- then, over years, got benefits, treatment, reality, examination of body, bowels, bladder, neurology, prescriptions,  but retuning to hometown resulted in return to comedy of dark errors as if they use their skills to try to get me to go away.  The harder I tried, the better they deflect, their tricks (call back in a week, hang up in two rings, say I did not answer, long list) are so well known to me.   I do get frustrated with them, and fear the harms they manifest and subtly (sometimes) threaten.

You can call me SpiderMan because the arachnoiditis is web shaped and the spare neurons are a mixed blessing- fun to imagine some positive effect from all the scar tissue, which is actually neurons owing to altered spinal cord cerebrospinal fluid- I'm very brainy!  Just not good politically.

Here is a mid point YouTube visual of what CIAA is- mine was not from Pantopaque but from refrigerated (made toxic) Metrizamide  https://youtu.be/QL6z1DnoJao?t=208

Imagine millions of little vise grips that selectively, mysteriously, clamp from one end of neurology to the other- and nobody will ever, ever, say what it does to the brain-so I pretend I am immune to keep my sanity.

[kanewnut]

On 6/22/2019 at 7:19 AM, shrekthetank1 said:

I changed doctors at the VA ( you can do this at anytime).

I had to write and call my congressman to ever get mine changed.

[kanewnut]

19 hours ago, Spidey said:

there was no withdrawal if tapering off over a couple of weeks

That was not my experience. I used Methadone for many months, I tapered off but I still went through withdrawals. I used Morphine for a long time. As much as 90 Mg a day. I had a problem getting it from the VA doctor. I tapered off it and went through terrible withdrawals. I won't go through that again. I think now after several years I am back to normal or as close as I can be.

[Spidey]

2 minutes ago, kanewnut said:

I had to write and call my congressman to ever get mine changed.

This reminds me of the intel I have held since about 1993-4.  There was a time a vet could go to the V.A. and be seen that same day for service connected disability.  Vets began (with the Internet starting then) to organize in the waiting area they sat the day out (roughly) to see a doctor.  This was AMAZING and great because one could get a second opinion in a second day. There was a MASSIVE built in checks-and-balances system, old docs with expert experience, new docs with new advances, able to advise the veteran the same day they visit.

Now, we have the PCP program- a single doctor is the only access, and necessarily, via appointment only.  This way, a doctor can FORCE A DIAGNOSIS and not be assessed nor corrected nor be accountable to the veteran OR his fellow doctors.

See how awful the pop-medicine movements can be, invisibly sugar coated new solutions that are instead new ways to avoid doing their dang job?  See how, now, even the DOCTORS are isolated into helplessness- can't cite OTHER doctors saying the same thing?  See how the pop Addiction Recovery Industrial Complex (mixing and coining phrase) can afford those all-day-every-day-radio-and-TV ads can AFFORD the advertising?

This is the decline and fall of America augmented with our stupidity and gullibleness multiplied by a foreign enemy moving (what I call) chemical weapons (Fentanyl) in through the clueless Postal Service and over the borders, under it, around it, or Way Over It.

All the while, the aged, wizened, become fearful,  and no longer counterbalancing the young, impulsive, pop-addicted, word based, masses.  

A related, distant example- The Cancer Societies, the ribbon societies they all make ever more claims of all capability and lack of any progress as reason to send them more money- calling themselves non profits, they get fat paychecks, sympathy., the ear of media in an instant, making their followers run around in circles to raise more money.

I sincerely believe my situation, your situation, the reason Hadit is necessary, are all telltales of a much greater breakdown.   I speak from decaades of watching new presidents (no disrespect) promise help for vets and the System (now called Deep State) just waiting out Reagan, Bush, Clinton, Bush Obama and now, dealying President Trump with fake baloney obviously fake- and media eats it up like starving ethiopians handed candy bars.

Hadit could, may, be a solitary way to referee this overall problem, have long thought so.

The one thing I can offer everyone is that humans are designed to suffer, be miserable, and shine brightest when taking on the misery directly, helping others with it.  Remember, 20,000 years ago, an ice age erupted, and it was 10,000 years to a pillow or blanket.  Don't get talked into being helpless- the weak part of humans.  Thanks Kanewnut

Spidey

[Spidey]

7 minutes ago, kanewnut said:

That was not my experience. I used Methadone for many months, I tapered off but I still went through withdrawals. 90 Mg a day. . I tapered off it and went through terrible withdrawals.

I have to respect your report- was very afraid of addiction for decades before any opioid use- so I kept the dosage low. Most of the years was taking oxycodone, 5mg, the optimal number was 4-6 a day. A little relief at the start of every day could be leveraged into a day of increased activity.  More than that, was taking opioids to treat taking opioids- just like taking Motrin for the (kidney harmed) pain in my mid back Motrin was causing.  Thanks for the plain talk, kanewnut, I do wonder if higher doses are actually addicting (as opposed to tapering off in two weeks).

Spidey

[kanewnut]

On 6/24/2019 at 8:04 PM, Spidey said:

I do wonder if higher doses are actually addicting (as opposed to tapering off in two weeks).

I don't think the doses make much difference. If you take the same dose day after day for months I am pretty certain you will have a physical addiction. I kept asking for larger doses of Morphine to help with the pain. I was also taking Hydrocodone for break through pain. It worked pretty good until the doctor or his staff didn't get my Morphine to me before I started having withdrawal symptoms. I raised a ruckus and the next two months they sent me Morphine without me even asking. I never got high or had breathing difficulties from these meds. I can't understand people taking them for recreation. Maybe someone who doesn't have pain gets a good feeling from them.

[Spidey]

4 minutes ago, kanewnut said:

I don't think the doses make much difference. If you take the same dose day after day for months ...  Maybe someone who doesn't have pain gets a good feeling from them.

Hiya Kanewnut!

I can only relate with certainty my experiences to help others (and this is actually an appeal for legal help) since anything else does more harm than good.  I tell the truth no matter how embarassing.

 

1) I feel good from taking low dose oxycodone (5mg) start of the day.  I never sleep well, wake feeling worse than before bed. I do not get enough excercise- it is painful and for long afterwards, causes nerve injury (more spasms, numbness, sometimes permanent).  The low dose can be exploited like a surfer rides an ocean wave- instead of working up to doing something productive ten hours into the day- when the world has already gone home.

The point of pain medication is to treat pain. Pain pulls the psyche down over years. Persons I can hardly restrain from calling names (professionals) do not have these problems and interpret facts to suit their arrogance- this is PROFOUNDLY so at the local V.A. clinic.  They lie, play phone tag,. change meaning of words, tell me the doctor does not know how to treat pain, then in an appointment, the DOCTOR tells me I said it.  Some are good people, some are the lowest skim off the top of the worst scum on Earth.

2) Over many years, I discovered if prescribed too much opioid, one takes opioids the next day in part to treat taking opioids- that is addiction.  However, if I only took one, 5mg, oxycodone per day, the evenings would be hell.  So I take the other three evenly distributed across the day even though they seem to do nothing at all.  After 19 YEARS of doing this, I learned- less is more palliative good and less downsides.

3) I like to say Pills Are Not Priests! This means no matter who is prescribed or taking a drug, the drug has the drugs effects, dependent in part upon dosage.  When I was TRICKED into taking as I was verbally told, then the microscopic print on the bottle said something else and called in, I discovered my doctor had been replaced ON THE PILL BOTTLE but not as my PCP.  This means the prescriber cannot be reached, asked,l contested.  I figure if this person shows up for Douchebag of the Universe, he will probably win.  (tip o th hat to Jimmy Fallon, Kirsten Dunst MTV music awards- Youtube it)

4) A year without opioids shows me, instead of being up and about, supervising people remodeling home, I am in this f' ing recliner waiting for the SCI-D staff to do their f'ing job- and discover they (the Best of the Best) are also playing the same games as the local clinic- and no coincidence- the local clinic must fill out a form to get SCI-D to see me, so I can go get probed (and often, new infections, I have MRSA for life now) and drive 800 miles round trip- spend weeks- just to get the pain med that makes a) getting around b)driving or flying c) walking around a hospital d) not being distracted by pain so I don't focus on the moment.

 

The spinal cord disease is static- and the United States is seen via Veterans Administration, to be crumbling and trying to get me to try new things- and they ALWAYS mention the things I already tried BEFORE EVER TAKING OPIOIDS.  It was the last resort.

Get mad.  Get REAL: mad, and get REAL with your heart (all of you) and notice if the strong will not defend the weak, then our nation, the most powerful, becomes weakened- just as it is now- training kids that Nationalism is bad, America is bad,. have you noted there is only one historical figure not treated as scum- Tesla- and all our forefathers are now scumbags?

The enemy nations win and the V.A. is the easiest to alter, bunglef.ck, exploit their long term SNAFU, let greed and laziness in V.A. rule the days.

 

I should stop- but there is absolutely no doubt a) Pain relief is attractive, if you do not say it JUST RIGHT they will say you like the euphoria b)Euphoria happens when you get a freaking cannon ball backpack off your back for an hour c) There is an underlying problem making U.S. citizens more like stupid cows to be herded with phrases like ...Didn't you watch the news... as why they stopped opioids.  It is just sickening, no pun.  Many will die- not from suicide- but from declining health caused by being immobilized so their bodies weaken (decondition) as I know so, so, well. 

When I called the White House Hotline for VA problems a couple years back (MRI and cardiac results not forthcoming, delayed months for both tests) the local clinic, so far from D.C. plainly, but sneakily, showed their displeasure and plainly hampered my effort at reasonable health care further.  I would not wish my problems on them- but if they had ONE FREAKING WEEK of it, wiggling like w WORM to try to lessen the pain in extremities, why, that may wake them the hell up.

Thanks for your point of view I do not question your experience.  Welcome anyone to consider hard won experience spanning almost 40 years.

Insert appropriate song here... Lyrics for hearing impaired..  Fight for others it does help.

I've been trying There's no denying. It's sending me Out of my mind. I've seen reason Change to treason. It's losing its sense Of all kind. How much longer will it take For the world to see. We should learn to live And simply let it be. Bloodstone, bloodstone. In the night time Wake in fright. I'm so scared of the game That's being played. Start to wonder What's going under And how many deals Have been made

 

Spidey