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

[Violet M]

John, if you are eligible for food stamps maybe that would help you out a bit with your budget and maybe you can qualify for low-income housing which is often pretty nice, actually. I have a friend with PNE who has aides come in to help care for him since he is disabled due to his PNE diagnosis.
I don't know if you would qualify for help in any of these areas, and maybe you have already looked into these things, but I just wanted to mention some possibilities of things you might be able to get help with.

I don't know where you live but there might be a pain doctor locally who would know how to put in neuromodulation at the conus medullaris or maybe a pain pump if you haven't already tried it. Or you could try reading Ezer's posts on this forum to see if anything he says on the mindbody approach might be helpful to you.

Violet

[John Carter]

had a dream last night... dont get much rem sleep without help passing out for longer...Was directly linked to this condition though... I always say it would be nice to be in space with no gravity to help agrivate the nerve... So i was riding up to orbit with my mom... Didnt know how i was getting a ride up but once i was riding those booster rockets up i was like OK lets do it lol.... hanging out in orbit just enjoying not being in pain lol....

[John Carter]

thanks V.... It looks like you are manning this board all by yourself now..... I have been posting on the UK health unlocked board.... Is a pretty active community.... Kinda seems like everyone in the US is forced to lose hope... I completly get that given how cruel things are getting since we are lumped into the chronic pain condition.... I should qualify for everything... Since it takes 6 months for the housing authority to just get started and since it always seems impossible that i could last that much longer it appears that it hardly applies to me.... The real truth bout why i am in this spot is that way back before i went to france for surgery i was planning if that didnt work i was just going to end this shit where i was going to live my life.... Been sick of just waiting for nothing for a long long time.... I have a appointment with a pain doctor on tuesday but i am expecting nothing beneficial from it... Pain doctors here are mostly just designed to say no to patients where regular doctors push you to them so they dont have to deny u themselves.... Went through so many pain drs in the first years of the condition.... bunch of Nay sayers.... It was a Dr Witten a primary care that kept me alive for all the years i returned from europe... The only reason i returned at all was that my ex made me swear that i would not end this sorry state of being.... the old fight to the last breathe swear.... really just wanted to pass in someplace beautiful.... I would have... Just been a pennyless cripple ever since i got back... holding out for nothing at all......... I feel this way because despite knowing my right side 4th lumbar dorsal nerve root just controls the couple of muscles responsible for my entrapment doing anything about this nerve root has been absolutly denied to me.... Knowing what cures me and being refused any treatment of it is just so F'ed up.... It is so hard for any PNE patient to find any remedy... So the fact that i found what controls my entrapment and just because the condition is rare so no one want to do anything about it is really infuriating...


I used to get resonable amounts of food stamps.... Only get 20 bucks a month now... they lowered it from 200 minus 20 bucks a month till i was down on 20....

[John Carter]

ha.. ya V i do still have a sense of humor.... My neighbor said the other day "Well you look like u are doing good" ...lol That was a joke in itself... made me laugh... I said" man i can laugh even in the pitts of hell"... got to.... without fighting to keep my mind up above where my body is I could literally die... Gatta disassociate from the suffering it will just make the sufferin worse... Anxiety just makes the muscles entrap more.... after almost passing a year ago and what happened bout a month ago the sufferin will get so bad that the brain will kick in the dmt... Is totally crazy but the mind is taken to that limit... It can get so far gone it just starts the white light juice flowin... that last time was when my dr appoitment got postponed for a month... just startin freakin and the brain just turned on the dmt... My psyche is at the limit nowadays....

[stephanies]

John,

I remember you from the old forums. I don't have any real advice, just want to send you some encouragement. Have you tried PRF or thought about an implanted pain pump?

Take care,
Stephanies

[John Carter]

thanks steph.... I would take any help.... the doctors dont really want to do anything anymore.... they just expect me to suffer with a curable form of PNE.... no one cares.... it doesnt matter that my condition could be cured... i just expected to sufferer with zero quality of life forever.... even if a doctor knows anything about PNE they automatically just think there is nothing to be done and make the patient try to think they just have to accept the sufferering a live a life with no living in it....

I am not a quitter but i am pretty much done... this last birthday marks a whole decade with this... a curable form of PNE... i know u all think i half crazy for thinking the condition could be cured but it would be true for me if i was allowed to get the surgery that would cure my form of PNE..... I know no one else apparently has ever had the same results of 100% entrapment releasement when the 4th Lumbar dorsal nerve root is blocked but it is true in me... My condition would be cured if i could get a dorsal nerve root neurectomy.... cause in me this root just controls the piriformis and maybe another completely functionless pelvic muscle....

I really just want to pass since my treatment for my PNE is denied by medical politics in america now.... since it doesnt matter to most anyone that i went through hell to find a 100% curable treatment of my muscle entrapment.... I just dont matter to anyone and would rather just go if i am expected to exist with a treatable form of this condition.... being in hell with a escape door visable but forever locked to me is worse than death.... My case should be seen as a medical breakthrough for this condition but instead i am just expected to stay in hell forever for some reason..... If there are completely useless muscles in the pelvis that only cause pudendal nerve entrapment and are completely treatable by stopping the spine nerve root that only controls these PNE muscles it should be seen as a miracle disovery... But I am just completely ignored.... expected to suffer forever for NO Reason... except for enforcing continued ignorance of this condition....

[John Carter]

i would do prf if i could get to where i could get it....

[John Carter]

steph u had surgery with filler in 2006 i had it in 2009..... He did a injection into the piriformis right next to the pudendal nerve and that 100% replicated at the source what all the blocks of the L4 root blocks did by stopping the root that controls the muscles themselves.... 100% entrapment releasement with no adverse consequences.... His surgery failed but the injection before the surgery was the only one into the pelvis that deaded the area that is responsible for the entrapment.... That is why i gave him bout $23000 dollars for the experimental surgery.... virtually all the money i ever had in this world.... havnt had enough money to get another surgery with him though..... He was the closest i came to being fixed.... His injection next to the nerve was in exactly the right spot..... if he could of cut out the whole piriformis i probably would of been fixed.... he didnt cut out enough though.....

[John Carter]

i was also crippled in 2004

[Violet M]

Sounds like you are really worn out from this, John. Chronic pain can be exhausting. I wish you could find the right doctor to help you in your area but I understand how that can be a real challenge. It often is all about finding the right doctor who knows what to do for you but then getting insurance to pay for it is another part of the problem. I'm sorry you are facing all of this.

Violet