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]

Well Spidey you can certainly get quite wordy. I don't think I have enough brain cells left to be wordy. I am really sorry to hear that someone else knows what severe chronic pain is like. I certainly understand the lack of a life. In my case I am still fighting the VA for benefits and so far they are winning. I think I may have a current doctor that understands. Things have to get better because they can't get any worse. I have found that deep tissue massage work is beneficial for my pain. But it costs me $60 a week out of my pocket. That is quite expensive.  

[Spidey]

23 minutes ago, kanewnut said:

I am still fighting the VA for benefits

Hiya Kanewnut!

Yeah, the one thing I can do is type like mad- laying down for a period of time.

Here is what helped me (choosing brevity over precision) get benefits.

1) Snuck into civilian hospital as illegal alien to get CT and honest diagnosis- shove in V.A. face.

2) Have brother start yelling so they teach me lesson by sending to SCI-D V.A.

3) Keep written notebook of phone log, what people say to you.

4) Witness at each and every appointment- take notes for you.  Checked your reflexes through boots? Hm!

5) Bug your own phone- older telephone answering machines do this.  Fill up, get another one. repeat

6) Every time you get any med from V.A.- write in log book

7) SKIP the V.A. claims rep- seek out D.A.V. or P.V.A.

Get seen by V.A. for serv conn disability- watch out for increasted injury from malpractice

(whats with the glasses-smiley face- I don't know)

9) Keep a log SEPARATE from comms log about symptoms, reaction to daily self care, living activities.

10) Do not take motrin or other meds before being examined that briefly make problems less detectable

11) If your doc is a boob- do not delay- get a different one. If they do not speak good English- STOP.

12) I had to move to a V.A. region that was not devoted to denying access (for whatever reason)

13) Get written testimony from any friends, co-workers, former co workers- family testimony less valuable.

14) Learn the law- BVA decisions- and precisely what laws and criteria apply to your disability

15) Inservice medical data- get it into paper form, put in binders so you can sort it, see it, chonologically

16) It turned out Social Security was WAY WAY faster and easier to get- despite the law using V.A. data.

17)  Do not immediately appeal every decision- a final unappealed decision is appeal-able for years- get evidence to back up where the V.A. decision was wrong.

 

These were the painstaking, decades long, things I did from before there was an Internet to do claim research in order to get the minimum.  I am sad to have you tell you how rotten it is. Your inability to function physically will either help or be used against you when you cannot appear as if fully able, capable, healthy, ambulatory. You must be akin to a legal expert and in full capacity and it is so, so sad as it is impossible, mostly.

That, incidentally, is how a lowly mechanic learned to type- so something good came of the V.A. treadmill.  I would have never done crap online- just a junkyard devildog- if not of necessity.  Now, V.A. is STUCK with me.

The cartoons may help ease the pain, Kanewnut.

 

Spidey

[kanewnut]

16 minutes ago, Spidey said:

7) SKIP the V.A. claims rep- seek out D.A.V. or P.V.A.

Unfortunately for me the NC VA rep lied to me. When the VARO asked if I wanted to drop my appeal to the BVA he told me that the appeal meeting I just had with the VARO was the same thing I would get at the BVA.

I had the DAV lie to me and tell me that I needed new and material evidence to continue with my TDIU appeal. That will cost me several years of TDIU. 

I still send stuff through the DAV, but I consider them just a data logger. Basically as useless as tits in a bore hog.

Many of the cartoons are really sad. A couple very funny.

[Spidey]

3 minutes ago, kanewnut said:

  DAV lie to me and tell me that I needed new and material evidence to continue with my TDIU appeal

Hi Kanewnut

1) I never got an honest answer from the V.A. rep- had troubles sometimes with D.A.V. whom I ALWAYS DEALT WITH IN PERSON.  An imperfect solution- but 100-to-1 better than the V.A. rep.  

Rationale..  You do not go to the mechanic that f-ed up your car expecting an honest answer to "How did you f-ck up my car (my claim).  Better still, do not take your claim to that dealership at all- they are invested in making their mechanic look infallible.

 

It is possible to foul up a claim and make it un-foul-up-able. However, if you ultimately win a TDIU claim you can (and I did) get years and years of back pay- the only way I would ever afford a home purchase was the years of suffering got finally compensated for a DECADE LATE.

Don't give up, fight, if nothing else, you pave the way for others.

Other.  Nowadays, I do not know if law has changed- before, it was ILLEGAL to use a professional attorney UNLESS you had already lost your case and appealed to BVA.  Some say this has changed.  There may be a third option- a REAL attorney.  Ask around at Hadit- I bet they have a current answer.

Other.  I would know my claim, all the details, and have THAT in a paper binder to review and use to find a good D.A.V. person.  I did go ultimately to the P.V.A. because the NSO at D.A.V. retired and the replacement was ...something vastly less capable.  With spinal cord injury OR dysfunction, P.V.A knows to find out if you have bowel, bladder, creative organ dysfunction, loss of use, which helps your TDIU claim AND is a Special Monthly Compensation entitlement of its own- but SAVE THE DETERMINATIONS because (as my case, today) I cannot find the actual, current, SMC or TDIU determination to shove in the local CBOC face to establish a genuine, progressive, end in death, spinal cord disease-dysfunction.

Hope this helps a lil bit.  If poor, hit up yard sales for PC, surge suppressor, older printer, but ya still gotta get print cartridges.  I found a flatbed scanner VERY USEFUL and often contains a fax machine- when people are helpless, useless, unwilling to go to your record- you fax them in the face with your evidence. This also means you KEEP THE ORIGINALS and get a PAPER output at every appointment. DO NOT use the online system (I do not, anyways) when my records got fouled they said I DID ITvia the online system which I NEVER USED AND NEVER SIGNED UP FOR. 

It is nasty.  You have to get nasty to merely get the minimum- TDIU- then you gotta HIDE FOR 20 freaking years for it to be permanent.  Geez. Now I am sad.  

Spidey