Avatar

sudoshakes

sudoshakes@reddthat.com
Joined
0 posts • 21 comments
Direct message

I went for surgery that was to repair a urethral stricture, with the expressly stated reason for doing it as being able to be catheterized in a future spinal fusion procedure. I told every single member of my care team this information, and all knew about the spine instability. A Spondylolisthesis diagnosed by their same hospital system.

I woke up in agony screaming before I could see. They put me in a position that allowed my back instability to shift. I was screaming to drop the bed. The nurse told me to calm down.

When I was finally laid flat, I noted I could not feel my genitals and I could not feel about half of my legs or any of my feet. Totally numb.

I was discharged from the hospital 3 days later with a walker because I couldn’t feel my feet and needed assistance to walk for a proc sure that never should have required it.

They billed me $250 for the walker, and never followed my requests to ascertain why I was paying for a walker that was the resulting need of malpractice. This was sent to collections.

I get phone calls weekly about a walker I should never have needed, and should not have been billed for as “outside of network” because it was not pre-approved for an urology procedure.

Who in the fuck assumed a loss of leg function from an urology surgery? Who gets that pre-approved?

Fucking cunts.

permalink
report
reply

It may seem like that is the case for a bit, and often does to many patients. Myself included.

Keep in mind the target population is patients who are centralized sensitization patients. There are alpha channels of nerves that through real physical injury have created a feedback loop in the nervous system with the brain.

In these patients, who do have very real injuries, the pain levels are outside expectations for the things we can test, scan, see on imaging etc.

The mechanism is complex but essentially you can think of it as the nerve bundles of specific types are far more sensitive to stimuli and the brain becomes far more sensitive to signals received.

Breaking this feedback loop, which is often fed by avoidance of things, is important.

As for data, they have published papers in many journals with more than 20,000 patients who have been through the clinic showing progress improvement. Reductions in standard assessments for depression, improved mobility and exercise function, as well as removed reliance on medications / the polypharmacy causing underlying greater symptoms is proven in their large data set.

A lot of the mental model that has real impacts to physical symptoms revolves around breaking previously unrealized classic and operant conditioning that patients with this chronic pain sensitization often have present.

To correct and see the clear picture without clouding it, medications must be removed from the picture as polypharmacy issues can create a mess of problems that seem like they are bodily in origin but are in fact from the medication interactions.

It is a program vetted by the chronic pain treatment community for over 20 years, and the data is well reviewed, with every hour of the time a patient spends there carefully considered and measured for efficacy.

The program gets referral from many physicians in various other disciplines within and outside their hospital system for patients that meet their criteria.

To be clear, this is not a fly by night theory. It’s one of the best hospitals in the world with a program of pharmacists, doctors, PTs, nurses and supporting specialists who all meet daily per patient and make individual care plans. You seem them daily for hours a day. They monitor blood work and vitals as well as metabolic data as they taper medications. It’s deeply unpleasant but designed very intentionally to help. It does help.

Anecdotally, a patient story:

They came into the program malnourished, on a feeding tube, intense abdominal pain, GI bleeding, and on significant opiates to tackle pain levels from the GI issues.

On discharge, the patient had no expressed pain, was back to eating normally without the feeding tube, and was regaining weight . GI bleeding stopped.

6 months later they went back on pain medication from a pain physician and were right back in the ER with the same symptoms. Following the program’s instructions the same reversal took place again!

The power of the operant conditioning from taking medications when feeling symptoms is a powerful one that impacts the baseline arousal states of the parasympathetic and sympathetic nervous system. These impact all sorts of bodily processes which seem counter intuitive to apply to physical real problems, but the results speak volumes.

Everyone arrives a skeptic. I left seeing benefit in my life as a patient who these things apply to. I am not uneducated, I have created software to run clinical cancer trials for years. Yet even with that formal intellectual background I was missing things that had impact to my health condition. The average patient has less exposure to these things, and I spent 10 years seeking help for the pain before this from many physicians. Many things were tried. So all of that experience and exposure to alternative therapies and modalities to this one was brought in with skeptical critical analysis of their methods.

There is an element of trust required, and it is HARD, but the easy path of medicate or cut it out is often not the solution with patients like us. Since pain is very much a central nervous system process, treating as such makes sense.

permalink
report
parent
reply

Many chronic pain patients suffer from something called central sensitization.

I do, though didn’t really know about it in detail before finding a clinic that treats those patients.

I did 3 weeks at Mayo hospital’s pain rehabilitation clinic to run their program for patients that are all specifically central sensitization. You go in a bit blind not knowing what the program is, intentionally on their part.

It is run by several world class cognitive behavioral therapy doctors, and a team of nurses and physical therapists that work with you daily. It is… aggressive. You have no option to not do physical therapy or cardio, of which there is 2 hours and over 20 exercises to do every day. No matter how you hurt or feel. People who were there were all objectively seriously injured at one point and had like me real issues and real disabilities. The most empathetic thing that could do for you is to not acknowledge your symptoms and just make you do it.

They also took all and I mean ALL medications. Couldn’t have miralax. No advil. No gas medicine from the gas station. Nothing taken for symptoms. You could take things prescribed for conditions like aside reflux disease or insulin for diabetes, but nothing for how you felt.

So imagine having to do 2 hours of intense exercise, giving up all medications in about 3 days time, and doing things cold turkey for 3 weeks without any room to tap out. On top of that it is 35 hours a week of lectures on various topics related to the condition of centralized sensitization, chronic pain stress management, biofeedback, depression, anxiety, and skills to better enable you to live life.

They even held 1 hour sessions a week with family to summarize key lectures and give Q&A for them to help the patients be better supported in this weird chronic pain thing most families don’t understand.

It’s intense and not for everyone, but I went from being unable to do any physical activity, even walking the dog while I was taking pain medications and muscle relaxants etc. I went from that to biking 10 miles a day, at a 3:45 minute mile pace. I started their reconditioning program at 1 lb dumbbells doing curls for ten reps. I am now, 8 months after the program, curling 30 lb dumbbells and doing my own 2 hour workouts every week day.

I am still in incredible amounts of pain. They could not and will not fix the underlying causes physically or biologically.

However, they change patient lives with the CBT focus on how to live a more function filled life with chronic pain. They make us more active and better able to live a life worth living, within the constraints of moderate, sustainable, and adaptable.

Anyway, it changed me life and I would recommend it to anyone if they are in the long term battle with chronic pain. I saw specialists and got dozens of medications and scans for things. Surgical procedures, injections, blocks… you name it.

Only this worked to give me part of my life back.

Good luck to you

permalink
report
parent
reply

Had exact same fusion performed.

4 screws, 2 rods to connect them, and a 3-d sintered titanium cage between the vertebrae.

I can attest to the chronic pain and wanting to armor a bulldozer

permalink
report
parent
reply

smart enough to have a suppressor…

That is all of a form 4 stamp and a $200 check my man. These days it’s a few weeks dwell time.

I have 12 of them. Most of the guys I shoot with have several. None of them are even close to being on this side of the bell curve for intellect.

Dude had a plan that was well thought out, but the can on his pistol wasn’t an indicator of it.

permalink
report
parent
reply

https://www.blazingsword.org/

Please reach out there if you feel like you want to pursue gun purchases and would like instruction.

They are a non-profit that specifically helps LGBTQ+ people with finding an accepting and safe instructor for free. I volunteer as a coach through that organization.

permalink
report
reply

Do you lack the ability to fathom how stepwise change works?

When you can get 1% better you take it, and then take the next 1% and the next and the next.

Apathy until something is 75% better as a step wise improvement means you will never see it.

permalink
report
parent
reply

That leaves out when the company prompting you charges an administration fee to collect part of that sum donated for their own profits.

It leaves out when they, like CVS did with the diabetes association charity collecting at checkouts, take the money as an IOU to the charity while making money out to offset loans in the near term.

It leaves out structuring of collected funds to allow a 503C arm of the corporation to have tax advantaged status while also specifically being chartered to help the for profit company that you are shopping at.

There are a variety of scummy practices employed by organizations collecting those funds and it absolutely can benefit them to do so.

permalink
report
parent
reply

I was at the Mayo Hospital’s own chronic pain rehabilitation clinic, and have all the PT exercises they had their patients all do if interested.

permalink
report
reply

They wrote. It down.

It may prove to not end in consequences, but they took notes on a criminal conspiracy before the outcome and it’s part of evidence submitted in federal court.

Nothing burger is not nothing.

permalink
report
parent
reply