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.

[ShrekTheTank]

So a couple of things I did to get what I needed for pain.  I changed doctors at the VA ( you can do this at anytime).  Also doctors don't like this, and can be a very good bargaining chip.  A good doctor will find a way to get the pain meds you need to cope with the condition.  

Another thing I did was to get onto CBD oil (the good stuff).  I take 100 mg a day and I will tell you my mood is much better on it and far less pain.  I am able to take limited pain pill to deal with the bad stuff.  Lazuras naturals is a great site and they are keyed in on disability and veterans.  Very good discount.

Next the VA has a wellness program which includes tones of different things like acupuncture and chiropractic and message along with a lot of other classes.  

I know this crap sucks, but you can fight them and win!  

[vetquest]

Spidey, I empathize with you.  I left VA care when they stopped "habit forming" medications.  My civilian doctor started me on opioids at the lowest dose possible and told me I would get addicted but I would be taking them for life.  I do not know what the VA is doing but they are doing it wrong.  Have you considered writing your congressman or senator?  A good well reasoned letter might be what you need, if the VA gets their back up so be it.  You are not there to please the VA.  Good luck and Godspeed. 

[paulstrgn]

I have chronic back pain and my PCM (on a military installation) won't prescribe me any opioids type of medication. He has given me Tylenol 500 mg (does not really help) and has also sent me to pain management. Pain management has helped very little (I have several nerve issues). Needless to say I am very frustrated and am so tired of hurting all the time. I understand the opioid crisis but doctors also need to remember that vets need pain relief as well.  It sucks hurting!!!

2 hours ago, shrekthetank1 said:

Another thing I did was to get onto CBD oil (the good stuff)

 @shrekthetank1 do you get this from the VA? I wonder if the military would issue this? I also wonder if I am legally use this since I am a federal employee, I am thinking no. But if this would help I would love to try it. I do not know much about this oil, but are you able to drive after using it? Is it like if you have been drinking you need to wait before operating a motor vehicle. 

[Spidey]

8 hours ago, shrekthetank1 said:

  I changed doctors at the VA

A smart approach, Shrek.  The doctor himself has conducted himself honorably for about 15 years and pleaded with me to not fight- so he can retire in 3 (now, 2) years.  His underlings and boss cannot be changed.  However, my plan is to relocate after selling home to a regional V.A. that can refer me to SCI-D specialists since this was what corrected the bias previously.  Thank you.

Another thing I did was to get onto CBD oil (the good stuff). 

You will find I have tried most everything over 40 years, including CBD orally and by inhaler (vape).  In my experience (for me) my memory, motivation, impetus, connectedness to the world around me are hindered with cannabis or hemp products- However, I did notice CBD and THC products made me more okay with being miserable.  I currently have CBD stuff in my drawer here- and won't use it for 6 weeks to (yet again) find out if the frozen-in-place effect goes away.  IMO... Treat the symptom not the reaction to the symptom (pain).  I know many vets will die or suicide owing to this foolishness.  Remember, in some cases, suicide is not irrational.  If society declines such that facts and reality are set aside, causing more incapability and suffering (I HATE using that word) then it becomes more logical to escape it.

This forum is new to me- I am unclear how it goes, can type outside the message box, too

Thank you

8 hours ago, shrekthetank1 said:

 

 

8 hours ago, shrekthetank1 said:

  wellness program which includes tones of different things like acupuncture and chiropractic and message

1985- TENS 1990- Hypnotherapy 1993 Chiropractic  1994 Acupressure  1996 Inpatient pain program, talk therapy,  2005 Acupuncture.  Plus maybe a dozen other things.  Nerves that stuck together do not unstick unless torn loose (macro and microscopic aspects) each day.  One cannot think them into unsticking.

My spinal cord (for certain the lower part, Cauda Equina) does not stretch like everyone elses does. Sitting upright makes big trouble evaded for a few hours via destructive NSAIDS.  Guess have taken gallons of NSAIDS by 1997.

Keep 'em coming, Shrek! (years are accurate within about 1 year)

 

8 hours ago, shrekthetank1 said:

 I am able to take limited pain pill to deal with the bad stuff.

It is infuriating for me to ask for a lower dosage of oxycodone (Jan, 2018), realize am wrong, ask return to two more pills a day (the prescribed amount) and be told ...Requesting increase throws red flags... .   The doctor regardless DID increase to his prescription yet doctors out of sight took over, wrote microscopic instructions on pill bottle, I took as my doc prescribed, ran out early, trusting him, so SNAFU is multiplied and exploited.  Imagine the severity and long term aspects of a disability used against the veteran, along with phone games, pill bottle games, word games. 

Please forgive me I wonder if am using this forum correctly- why can one type outside the text box?  Thanks, Shrek!

S

8 hours ago, shrekthetank1 said:

 

 

[ShrekTheTank]

8 hours ago, paulstrgn said:

I have chronic back pain and my PCM (on a military installation) won't prescribe me any opioids type of medication. He has given me Tylenol 500 mg (does not really help) and has also sent me to pain management. Pain management has helped very little (I have several nerve issues). Needless to say I am very frustrated and am so tired of hurting all the time. I understand the opioid crisis but doctors also need to remember that vets need pain relief as well.  It sucks hurting!!!

 @shrekthetank1 do you get this from the VA? I wonder if the military would issue this? I also wonder if I am legally use this since I am a federal employee, I am thinking no. But if this would help I would love to try it. I do not know much about this oil, but are you able to drive after using it? Is it like if you have been drinking you need to wait before operating a motor vehicle. 

Nope. I work for a non profit and they test regularly.  I asked HR and they said anything from the reputable places are all good but you buddy who made it in his basement is not lol

not it does not give a high or anything like that. 

1 hour ago, Spidey said:

Thank you

 

S

 

Sounds like you have tried almost everything.  Wish I had more advise.  

[paulstrgn]

4 minutes ago, shrekthetank1 said:

I asked HR and they said anything from the reputable places are all good but you buddy who made it in his basement is not lol

I have never been tested except back in 1995 when I first applied with the government, but with my luck they would test me...lol. I will ask my PCM about it and see what he says, perhaps will also help with my hypertension. I am willing to try most anything legal if it helps with my pain.