Curso of knowing my exact cure but medical politics deny it.

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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Tue Apr 05, 2016 5:23 am

thank you V..... you guys have been the only people in my decade in the lowest level of earthly hell that understood what being trapped like this is like.... Utter exhaustion is all i do know.... I had one month of vacation from this in 10 years/// That was the first and only effective rhizotomy of the L4 root nerve.... The following 30 rhizotomies couldnt stop the nerve once it became IMMUNE TO FIRE for some reason... the average of 2 or 3 lidocaine or marcaine injections per rhizotomy would stop the root to muscle entrapment signals.... medical politics made it so doctors didnt want to try anything other than a rhizotomy .... misguided medical science.... The idea that nothing more legally risky should be tried is just a horrible fact of cowardly post 90s medical dogma....

I am so sick of a existence of absolute nothingness.... nothing but mental torment... and deprivation of anything other than torture.... without the right to try more invasive but neccesary treatment.... total poverty caused by the condition as the overriding factor limiting me to no ability to venture to where i could get the justified procedure/////

Well i have a intensely dreaded appointment with a so called pain doctor tomorrow.... The same kind of doctor that kept me undiagnosed in the first years of this condition.... Never had a good experience with a pain doctor..... Only seen how here they are just Dr NOs... and nothing else....

thanks for being the only ones who ever understood this war.... I have always appreciated all the kindness and empathy that only all you guys and girls really have the ability to give to a fellow warrior....
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Tue Apr 05, 2016 6:34 pm

JPS are monsters..... They gave me the wrong address.... So i was 8 minutes after 1130........ so they just canceled the appointment.... they have no souls........
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Wed Apr 06, 2016 2:05 am

went to the Baylor hospital emergency room after the JPS pain clinic stabbed me in the back.... am going to see a neurosurgeon through them and a PCP also.... It is hard to hope but am basically still begging for treatment of the 4th Lumbar dorsal nerve root.... gatta pretty much say that i am at the absolute end of my rope..... Making it clear that i DONT want to just be put of medication forever.... With the new laws that is impossible anymore.... so it is all or nothing cause of that.... they cant just expect me to live on meds if they are unwilling to just treat chronic pain conditions anymore.... Big Pharma has been undermined so maybe i will have a chance to get the surgery that has been denied to me so far....
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Re: Curso of knowing my exact cure but medical politics deny

Postby Violet M » Wed Apr 06, 2016 3:34 am

Are you, kidding? Only 8 minutes late and they cancelled? That is so cruel and totally disappointing that you didn't get to see the pain doc, John. I sure hope this neurosurgeon will be able to help you. Have any of your doctors ever suggested neuromodulation or pain pump?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Wed Apr 06, 2016 9:12 am

nope V they havnt.... I was so freakin shocked when i got to the pain clinic a little late... Cause one of them gave me the wrong address.... It was like reasoning with Hitler or something... they have a utter uncaring bitch working the desk there and she was so monsterous i could barely contain my rage.... Cancelling cause of such a minor thing.... No souls in that clinic.. Just monsters.....

So i went to Baylor.... they were kind atleast.. and the emergency doctor listened to my story.... there is so much that i stumbled a few times... but that is cause of my mind being partially gone after a decade of this... only bad thing is when he said why dont i go back to france.... but he understood when i said i spent my life's fortune on pudendal doctors and cant afford to go anywhere anymore.....

I didnt know JPS could be so horrible.... All this is a side effect of the mind degradation after a decade of mental abuse by the condition.... cant help that my mind is so scattered nowadays.... i am much more sane than i really should be.... after a decade of isolation i should be far gone....

well... i wish everyone well..... wish my wishes had more effect lol///
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Wed Apr 06, 2016 7:00 pm

I would put my picture u here as the avatar but it requires a tiny pic.... even when i cropped one it went from 39kb to 64... wierd
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Wed Apr 06, 2016 8:07 pm

I really hope i can find a neurosurgeon that will do what i want.... My PNE is different from alot of u guys.... I just horrible pain if the muscles increase the entrapment.... It is really hard but at certain times it can be at near zero.... The freakin stars have to align for it.... When not standing i gatta do something like lean against my temperpedic that is on the floor.... So i gatta hang my but in mid air... like most of us sitting on something flat will eventually cause the pain.... I can only do certain things... I gatta be in a state of mind where i am not thinking to hard to get the entrapment down... Just hanging here thinkin bout what to write actually causes the muscles to tighten or something.... With virtually no medecine i cant play any video games cause u think in a certain way when interacting....

I have to try to feel a certain way when talking to people.... If i am the slightest bit uneasy. Or if i am trying to talk to someone i dont know that causes the muscles to clinch.... I have ta do a kind mini buddhist chill out thing...

Yesterday when i was lost trying to get to this pain clinic to save my life it caused anxiety... So i was in horrible pain.... driving through the downtown sky scrappers just trying to concentrate just enough to not bump into someone... while bein in hell...

The only thing i got to be grateful for is that the entrapment does cause loss of motor control... If i was pissin and crappin myself i would of done the deed somehow... It is kinda funny how i walk around the HOOD.... U know how when walkin and u think maybe i should be worried bout some guy... Well i walk a think "Well i actually wouldnt mind if got stabbed in the back or something... So walk without a care in the world.... When i was visiting my Ex in poland i was in Katowice.... it is kinda the crime capital in poland... My ex would act like she came from shaddy places... It was a fuckin joke to me... I stayed up every night until the buses stopped running... Of course the awesome public transportation goes by every 15 minutes and is completely free.... I hung out on the party street every day and night... I was tempting fate as much as humanly possible.... Doing what here would get u robbed or stabbed or shot very violently.... I really carried to much money on me... but ididnt want to leave my medecine or money in my rooms.... was probably completely safe but i had the mindset of how if u leave stuff in many places here it will disappear very easily.... So when i was hanging out i ran into a group of seeming nice but still a kinda shady group of vagrants.... Well one of the girls just kept on getting me drunk as hell on cherry wine... which is like drinking a fruit punch... easy to throw back... well they were like lets go get a drink down the street at a shop... i went and on the way back they took me through a back street,,, That was where the "Trap" was set.... I saw the dozen guys comin in a circle... So i knew it was ON.... The big guy that came for me first i used my bottle to crash it down on his head... BOOM down for the count... But then i was swarmed... So damn drunk i had no possibility to fight back anymore... So 4 guys held me up agaist the wall and the leader had me by the throat... so they got my wallet and took bout 200 dollars in zloty... When they let me down i just said.." Man just take the money but i need my wallet"... So he droped it.... I had my backpack on me with almost all my medicine... a ton of morphine and hydrocodones and clonazepam.... they didnt even look in my bag.... So it was more of a freakin joke... they had to carry away the one guy i took down....

Well i then stumbled my way back to the party street and the whole experience was actually a great thing... Cause i ran into a group of young people that played in a band there... So this really kool group just adopted me into their kool gang and i lived at a house that the day of the one diabled friend had.... They partied everyday in a version of a Utopian kind frat house... cept absolutly no bad things that always go on in a group house here.... Was paradise... They wanted me to stay in poland and live for free there... I am a very likable person.... More a World Citizen kinda guy... Realized i am more of European trapped in america... When in france after the failed surgery i was in a bed in the little hospital with nothing to do cept stare at a wall... Then a nurse named Catherine felt sorry for me.... She said she wanted me to come live in their beachhouse in the upstairs room that was their daughter's who was away in college in Paris... I couldnt really believe it with the mindset of how people are over here.... So her husband came up to the hospital and said he wanted me to come live with them.... Unbelievable right.... That is just how good the people are over there.... Real people... Kind People.... Took me all over south france.... The best thing was when the national holiday which was Music Festivals for a week in EVERY town and city... Every hundred yards the goverment set up stands for ANY band that wanted to play....Absolutly EVERYWHERE... Every type of music.....

This is the life i would of had with my English Teaching career.... that i was months away from starting when i was crippled...

Here in the hood i am kinda lookin for a honorable end.... When the shootout started a few weeks ago I went to run into the firefight... Was ganna get right in the middle of it... And protect everyone with my life... A life i really just want to find a end to one way or another.... Like everyone here i just dont want to commit suicide.... I would like to go into the army in a fictional forlorn cripple detachment... Put me in a little bunker that protects some place... With some medicine...I would love to fight to the death against ISIS or other terrorists.... It is not insane at all... Not from where i am.... Give me a honorable end somewhere/// I am a good shot... Well just telling my story... From the Heights of Heaven on earth to a sentence in absolute hell on earth.... Everything i think is completely logical when u are as sick as me.... There is just No point in dragging this out forever.... That is only allowing me to be tortured for a endless sentence.... Which none of us should be condemned to ...

I am not a negative person..... I was just a very friendly person.... Had such a amazing future at my fingertips.... Is still so hard a decade later knowing how much i lost.... And for the whole time i could of been easily cured forever by any neurosurgeon .... Since i found the nerve root that only controls the couple of muscles in the pelvis that do nothing but cause PNE... Ridiculous that my discover matter to NO ONE... So many here are supportive... But on the heathunlocked UK forum the damn administrator said you shouldnt have the right to get this nerve root stopped from sending it's entrapment signals... 90 percent of the patients of the PNE patients here dont even care... Which is baffling to me.... Anyone that discovers a Cure for a PNE case should be seen as a Golden Discovery... But virtually no one cares.... Thanks Violet for always of been supportive...
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Wed Apr 06, 2016 8:53 pm

oh my god.... I cant see any doctors... My Aetna and Medicaid are absolutely useless... cant go see the referrals from baylor cause they say No one takes Aetna anymore.... freakin death sentence.... they said i can only see JPS... I would rather just die than go through that monstrous system anymore.... To just be treated like shit by everyone there.... so much for seeing more neurosurgeons.... condemned . that is everything that this existence.... just condemned... to be treated as a criminal for just being sick....
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Re: Curso of knowing my exact cure but medical politics deny

Postby Violet M » Thu Apr 07, 2016 4:22 am

John, if the docs at JPS can't treat you can you appeal to the insurance company to pay out-of-network? I'm not sure how your insurance works but I have a close family member who had to do that. Then when there was open enrollment he switched to an insurance company that would pay for care from the doctors he wanted. Even if you have subsidized insurance you may have some choice as to which insurance company you can choose. I don't know...might be worth checking into if you haven't already.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Curso of knowing my exact cure but medical politics deny

Postby John Carter » Thu Apr 07, 2016 10:43 am

would be worth it.... got no more minutes on my phone...... i am pretty close to that point where i nearly threw up to death last year... i know where that state is now.... all it would take is puking once and it would start the process.... got a few promethazines left or i would literally of just started dying tonight,,,, i am not in much of a state to do anyhting... to figure out anything... it is a bad way to go.... but i do want to go with the white light experience,,,, takes alot to get to that state of pure peace... a hard road.... not very far from walkin it again...
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