Story My progressive chronic illness and the logical decision to CTB [TW: medical abuse, medical neglect, medical talk, surgery talk, though not graphic]

[Exitwings]

Hi, I've spoken here and there about my situation, and I wanted to elaborate, digress, navelgaze, and just prattle on at length to get it all out in the only place I actually safely can.

I am not Depressed as far as the mental medical condition. Yes, I have Shit Life Syndrome, yes I am saddened and grieving, I'm not (totally) emotionless. But I want to start this by making it clear that while my mental health isn't perfect, I'm not the stereotypical suicidal person. (Nothing against them, obviously, it's just important to my story.)

As I've talked about in https://sanctioned-suicide.net/thre...es-about-reincarnation-afterlives-etc.173232/ I also have odd beliefs about the nature of Reality and such, which comes into play. I also do not identify as or with the meatsuit I'm trapped in, for identity and dysphoria reasons.​

Anyway I can't get too detailed about my medical condition — it's an atypical, possibly unique (though I doubt it) presentation of an already rare(-ish, zebras, you know what I mean) condition. Let's just say that my overall physical and mental function has been progressively worsening my entire life, with no clear cause. Every test comes back negative/normal.

Four years ago, during a test for a very similar cause, I, myself, discovered/realized the actual cause of my chronic illness. Literally in the middle of an invasive test in an OR that I had to be awake for. The neurosurgeon (Dr.A so this doesn't get too confusing), also a diagnostician – nay, THE diagnostician for the similar condition – would not let me tell him. He spoke over me, repeating some nonsense I don't remember, (practically plugging his ears and going "I'm not listening!") until I gave up trying to explain. He then insisted that I have a condition that is literally the opposite of what I have and what I was saying. (My symptoms get better when a specific part of my body is pressed, the condition he said gets way way worse with pressure on the same area).

For about 2-3 years after that I saw every neurosurgeon I could, begging for them to test and scan and explore the area, to tell me how to fix the misalignment, (to give me my life back). Most were verbally abusive. One told me outright that no one was ever going to help me because the misalignment is invisible on imaging and therefore it would be too risky to their careers.
I saw 1 neurosurgeon who believes me – but he's not the right specialty to perform the surgery. (Lets call him Dr.B)
(The neurosurgeon he tried to send me to, let's call him Dr.C, was one of the worst examples, but in a kinda hilarious way ngl. He insisted I was callous because he kept going on about how risky treating me would be for his or any surgeon's career, and I outright explained, as kindly as possible, that of course I don't care, this is my life on the line. I'm going to literally die if I don't get this fixed (not from the condition itself, unfortunately, but being in so much pain I need to CTB fucking counts in my book.) He insisted that the first neurosurgeon, Dr.A, the 'famous' diagnostician, got his ass sued by people he'd done surgeries on, so, see, it totally is such a dangerous job boohoo. I looked it up later because honestly I hoped that Dr.A had gotten comeuppance; yes he'd gotten sued but nothing came of it and there were no repercussions for him.)

I managed to scrape together enough information from these consultations and from medical journals to figure out the exact surgery and the exact specialty neurosurgeon I need.

I had a breakdown over the fact that the surgery isn't even difficult or drastic. It's actually really simple and relatively easy — it won't even leave a scar! When I realized that the surgeries I've already had and plan to have in the future as part of my medical transition (sex reassignment or gender affirming or whatever we're calling it nowadays idk) are all more risky more difficult just much More​

I started going to neurosurgeons with the right equipment and training for this surgery, even though the actual condition is not in their field (it's in the field of Dr.B, because the cause is usually in a slightly different area of the body and so my issue falls in the cracks between the two specialties.)
Unsurprisingly, I got more nonsense and fear from them. I've gotten the most advanced, clearest imagery of the location that could be done without actually sending a camera into the body. MRIs, Xrays, CT scans, and even something called a Single-Photon Emission Computed Tomography Bone Scan. The misalignment, which has to be there from the information gathered by traction tests, which matches my symptoms, is apparently too small to see. Which actually makes sense, because my symptoms started extremely mild and then progressed at a glacial pace in the last 30 years so far.

I explain the situation, the evidence, everything to these neurosurgeons in turn. They all nod and agree as I explain... until I get to the part asking them to do the minimally invasive almost risk-free (just the baseline risks of all surgeries) robotic surgery (that they have the equipment and experience to do) which has a nonzero chance to reduce if not cure my chronic illness.
All of them suddenly recoil at that point. They won't make eye contact. They backtrack, contradict themselves, fall over backwards to insist I'm wrong actually, I'm incorrect and a danger to myself (and them! boohoo!) because I want a surgery that's technically never been done before (oh they've done the exact same surgery to remove tumors, but not to shave off a millimeter of bone matter to offset an invisible misalignment). Nevermind that the theory is sound – that it's just doing a very small easier version of a much more drastic surgery that is currently the standard for a similar condition (a surgery that Dr.A or his colleagues do). In that surgery they cut into the body and remove several inches of bone matter. I'm asking for them to go in endoscopically, make maybe two teeny incisions to get to the area, and then remove a paltry two by three millimeters of bone (rounding up). Nevermind that because they use robots they can't even fuck it up by sneezing or whatever. Nevermind that the second best result of the surgery, in my opinion, would be them accidentally killing me.

I've always had CTBing as a glowing escape route in the back of my head. After a few years of this, of over 20 surgeons being godawful to me, I had to actually sit down and sincerely contemplate the possibility. I've had to put my transition on hold. Eventually my symptoms could get to a point where I can't do the bare minimum, and then how will I execute an escape plan??

The last neurosurgeon I tried made me physically go to his office for the consult. I had to be wheeled (I can't afford a power chair). We had the same pointless discussion where I explain everything and then he panics. He tried to delegitimize me by using false-equivalent analogies.
"You wouldn't ask a surgeon to remove your appendix just because you wanted!"
Preemptive appendicectomies are literally a thing, dude. Plus I had a whole fucking organ removed for trans reasons – an elective surgery "just because I wanted".
"You wouldn't ask me to do exploratory brain surgery just because you're convinced you had an invisible aneurysm that doesn't show up on any scans!"
If I was convinced the surgery had a nonzero chance of curing the symptoms that have and continue to ruin my life, then yeah I fucking would you absolute clown.
Also I am openly, observably transgender, especially in my medical files??? I'm clearly mid medical transition and a cursory skimming of my medical history makes it extremely obvious that I've been picking and choosing transitioning procedures like I'm picking off a menu for the past 11 years. How are people who graduated medical school so fucking stupid?

So yeah, this is basically when I gave up and switched my plans to deactivating the meatsuit and escaping this body, "life", version of Earth, plane of reality, etc.

The thing is... I don't know if the illness and the inability to get the surgery is The Only Reason. I've got a list of reasons that add up. It's just that there's no point in figuring it out as this tips the scales so heavily... and honestly it's really difficult to remember how it felt to live before the symptoms progressed so far. I'm really a high energy optimistic person, trapped in a malfunctioning meatsuit that I hate with every micrometer of my soul. I would hate it even if it functioned perfectly. It's not me, and it hurts so much to be trapped in it. To never see my face in the mirror. This world feels wrong, incorrect, off. And all the people who have been horrible to me – mostly medical professionals – makes me feel like even if the meatsuit was healthy this world is still a bit too cruel to be somewhere I can stay.

I got in touch with Dr.B recently. He's ridiculously difficult to get a hold of and like a year ago he'd told me he would give me a list of Correct Specialty Neurosurgeons for me to look into and try. He finally gave me the list, there's 3 names and I think one of them might be Dr.C – both me and Dr.B don't know all of the neurosurgeons I've been rejected by at this point, there's over 20. But I only need 1 to actually do the damn thing.

I need to call their offices. I haven't tried to do this in so long, I'm not totally sure what the script is. I don't have any hope for them. But I have to try. I keep reminding myself I have to try anyway. Hell, if they fix my misalignment and totally cure me, and I still want to sincerely CTB, to try to go home, then it'll at least be way easier when I'm not exhausted in agony.

— Thanks for reading. I left out a lot of things, including the actual worst neurosurgeon visit. I don't care if the metaphysical stuff and not-this-world dysphoria makes you think I'm "crazy" or if it makes me literally crazy; neither of these should diminish my autonomy, right to live and die the way I want, or my personhood ¯\_(ಠ_ಠ)_/¯​

 

[ruby09]

im so sorry that you are going through this, chronic illness is fucking awful and especially when doctors wont take us seriously or refuse to even listen to us. i hope that you are able to get the surgery or at the very least get treated better by the health system

 

[lifeisactualtorture]

Hi, I've spoken here and there about my situation, and I wanted to elaborate, digress, navelgaze, and just prattle on at length to get it all out in the only place I actually safely can.

I am not Depressed as far as the mental medical condition. Yes, I have Shit Life Syndrome, yes I am saddened and grieving, I'm not (totally) emotionless. But I want to start this by making it clear that while my mental health isn't perfect, I'm not the stereotypical suicidal person. (Nothing against them, obviously, it's just important to my story.)

As I've talked about in https://sanctioned-suicide.net/thre...es-about-reincarnation-afterlives-etc.173232/ I also have odd beliefs about the nature of Reality and such, which comes into play. I also do not identify as or with the meatsuit I'm trapped in, for identity and dysphoria reasons.​

Anyway I can't get too detailed about my medical condition — it's an atypical, possibly unique (though I doubt it) presentation of an already rare(-ish, zebras, you know what I mean) condition. Let's just say that my overall physical and mental function has been progressively worsening my entire life, with no clear cause. Every test comes back negative/normal.

Four years ago, during a test for a very similar cause, I, myself, discovered/realized the actual cause of my chronic illness. Literally in the middle of an invasive test in an OR that I had to be awake for. The neurosurgeon (Dr.A so this doesn't get too confusing), also a diagnostician – nay, THE diagnostician for the similar condition – would not let me tell him. He spoke over me, repeating some nonsense I don't remember, (practically plugging his ears and going "I'm not listening!") until I gave up trying to explain. He then insisted that I have a condition that is literally the opposite of what I have and what I was saying. (My symptoms get better when a specific part of my body is pressed, the condition he said gets way way worse with pressure on the same area).

For about 2-3 years after that I saw every neurosurgeon I could, begging for them to test and scan and explore the area, to tell me how to fix the misalignment, (to give me my life back). Most were verbally abusive. One told me outright that no one was ever going to help me because the misalignment is invisible on imaging and therefore it would be too risky to their careers.
I saw 1 neurosurgeon who believes me – but he's not the right specialty to perform the surgery. (Lets call him Dr.B)
(The neurosurgeon he tried to send me to, let's call him Dr.C, was one of the worst examples, but in a kinda hilarious way ngl. He insisted I was callous because he kept going on about how risky treating me would be for his or any surgeon's career, and I outright explained, as kindly as possible, that of course I don't care, this is my life on the line. I'm going to literally die if I don't get this fixed (not from the condition itself, unfortunately, but being in so much pain I need to CTB fucking counts in my book.) He insisted that the first neurosurgeon, Dr.A, the 'famous' diagnostician, got his ass sued by people he'd done surgeries on, so, see, it totally is such a dangerous job boohoo. I looked it up later because honestly I hoped that Dr.A had gotten comeuppance; yes he'd gotten sued but nothing came of it and there were no repercussions for him.)

I managed to scrape together enough information from these consultations and from medical journals to figure out the exact surgery and the exact specialty neurosurgeon I need.

I had a breakdown over the fact that the surgery isn't even difficult or drastic. It's actually really simple and relatively easy — it won't even leave a scar! When I realized that the surgeries I've already had and plan to have in the future as part of my medical transition (sex reassignment or gender affirming or whatever we're calling it nowadays idk) are all more risky more difficult just much More​

I started going to neurosurgeons with the right equipment and training for this surgery, even though the actual condition is not in their field (it's in the field of Dr.B, because the cause is usually in a slightly different area of the body and so my issue falls in the cracks between the two specialties.)
Unsurprisingly, I got more nonsense and fear from them. I've gotten the most advanced, clearest imagery of the location that could be done without actually sending a camera into the body. MRIs, Xrays, CT scans, and even something called a Single-Photon Emission Computed Tomography Bone Scan. The misalignment, which has to be there from the information gathered by traction tests, which matches my symptoms, is apparently too small to see. Which actually makes sense, because my symptoms started extremely mild and then progressed at a glacial pace in the last 30 years so far.

I explain the situation, the evidence, everything to these neurosurgeons in turn. They all nod and agree as I explain... until I get to the part asking them to do the minimally invasive almost risk-free (just the baseline risks of all surgeries) robotic surgery (that they have the equipment and experience to do) which has a nonzero chance to reduce if not cure my chronic illness.
All of them suddenly recoil at that point. They won't make eye contact. They backtrack, contradict themselves, fall over backwards to insist I'm wrong actually, I'm incorrect and a danger to myself (and them! boohoo!) because I want a surgery that's technically never been done before (oh they've done the exact same surgery to remove tumors, but not to shave off a millimeter of bone matter to offset an invisible misalignment). Nevermind that the theory is sound – that it's just doing a very small easier version of a much more drastic surgery that is currently the standard for a similar condition (a surgery that Dr.A or his colleagues do). In that surgery they cut into the body and remove several inches of bone matter. I'm asking for them to go in endoscopically, make maybe two teeny incisions to get to the area, and then remove a paltry two by three millimeters of bone (rounding up). Nevermind that because they use robots they can't even fuck it up by sneezing or whatever. Nevermind that the second best result of the surgery, in my opinion, would be them accidentally killing me.

I've always had CTBing as a glowing escape route in the back of my head. After a few years of this, of over 20 surgeons being godawful to me, I had to actually sit down and sincerely contemplate the possibility. I've had to put my transition on hold. Eventually my symptoms could get to a point where I can't do the bare minimum, and then how will I execute an escape plan??

The last neurosurgeon I tried made me physically go to his office for the consult. I had to be wheeled (I can't afford a power chair). We had the same pointless discussion where I explain everything and then he panics. He tried to delegitimize me by using false-equivalent analogies.
"You wouldn't ask a surgeon to remove your appendix just because you wanted!"
Preemptive appendicectomies are literally a thing, dude. Plus I had a whole fucking organ removed for trans reasons – an elective surgery "just because I wanted".
"You wouldn't ask me to do exploratory brain surgery just because you're convinced you had an invisible aneurysm that doesn't show up on any scans!"
If I was convinced the surgery had a nonzero chance of curing the symptoms that have and continue to ruin my life, then yeah I fucking would you absolute clown.
Also I am openly, observably transgender, especially in my medical files??? I'm clearly mid medical transition and a cursory skimming of my medical history makes it extremely obvious that I've been picking and choosing transitioning procedures like I'm picking off a menu for the past 11 years. How are people who graduated medical school so fucking stupid?

So yeah, this is basically when I gave up and switched my plans to deactivating the meatsuit and escaping this body, "life", version of Earth, plane of reality, etc.

The thing is... I don't know if the illness and the inability to get the surgery is The Only Reason. I've got a list of reasons that add up. It's just that there's no point in figuring it out as this tips the scales so heavily... and honestly it's really difficult to remember how it felt to live before the symptoms progressed so far. I'm really a high energy optimistic person, trapped in a malfunctioning meatsuit that I hate with every micrometer of my soul. I would hate it even if it functioned perfectly. It's not me, and it hurts so much to be trapped in it. To never see my face in the mirror. This world feels wrong, incorrect, off. And all the people who have been horrible to me – mostly medical professionals – makes me feel like even if the meatsuit was healthy this world is still a bit too cruel to be somewhere I can stay.

I got in touch with Dr.B recently. He's ridiculously difficult to get a hold of and like a year ago he'd told me he would give me a list of Correct Specialty Neurosurgeons for me to look into and try. He finally gave me the list, there's 3 names and I think one of them might be Dr.C – both me and Dr.B don't know all of the neurosurgeons I've been rejected by at this point, there's over 20. But I only need 1 to actually do the damn thing.

I need to call their offices. I haven't tried to do this in so long, I'm not totally sure what the script is. I don't have any hope for them. But I have to try. I keep reminding myself I have to try anyway. Hell, if they fix my misalignment and totally cure me, and I still want to sincerely CTB, to try to go home, then it'll at least be way easier when I'm not exhausted in agony.

— Thanks for reading. I left out a lot of things, including the actual worst neurosurgeon visit. I don't care if the metaphysical stuff and not-this-world dysphoria makes you think I'm "crazy" or if it makes me literally crazy; neither of these should diminish my autonomy, right to live and die the way I want, or my personhood ¯\_(ಠ_ಠ)_/¯​

It makes perfect sense actually and I can relate to a lot of it. Drs are complete douchebags in my opinion. They abuse me endlessly so now I constantly fight with the only 2 people left in my life for giving up on the medical field. 13 specialists and counting and it's a huge circle jerk. No one will touch me surgically to fix my chronic pain issues even though my spine is like a spinal staircase now. They crippled and deformed me doing tests for things we all know I do not have but that they are currently making the most money off of. This meat cage is literal torture daily and the pain is intolerable. This world has always had its own cruel rules only for me and I literally show people and bring them to appts and listen to the sadistic things the drs say to me and yet they still say - just go to another Dr. - i can't even deal with peoples stupidity anymore. I can go on and on but my point is I totally get it and we should have the right to leave if we so choose and sometimes it's the only thing left we have control of. It technically is self-preservation when we choose to not allow the world to abuse us to a sadistic level anymore.

 

[Alabaster]

Hello. Is there a chance you can find a willing and competent surgeon overseas?

Have you tried acupuncture in the area you say causes an improvement when it's pressed? (I believe that acupuncture is scientifically supported, even though its practicioners tend to also peddle bunkum alongside of it)

 

[Exitwings]

Hello. Is there a chance you can find a willing and competent surgeon overseas?

Have you tried acupuncture in the area you say causes an improvement when it's pressed? (I believe that acupuncture is scientifically supported, even though its practicioners tend to also peddle bunkum alongside of it)

I haven't really reached out of my state yet. I'm next to a major city with many many doctors. Also I'd definitely go to Canada first for out of country. (I'm in USA.)
I've tried a chiropractor to try to guide the misalignment into place over a long time, no dice. I've tried wrapping the area daily to push it into place – had to stop because my skin hated it.
I don't see how acupuncture would do anything to the misalignment? A major part of my neurology is being compressed.

I still need to contact the 2 names I was given. I'm very tired.

 

[Alabaster]

That's all fair. Obviously, I don't know the details or anything. Just take this as spitballing from someone who knows nothing about anything. I'm in something of a hopeless situation myself, and I know how I'd feel about some dumbass charging in with half-baked 'solutions', so I'm reluctant to even say anything. I know how it feels to be tired. But fuck it, if there's a chance it could help you, it's worth a try.

It sounds like, with doctors, the problem you're running into is a legal/regulatory one. You *might* have fewer issues with that in farther (non-Western) places. That comes with travel costs, higher risks and so on, but it might be worth googling.

It sounds like acupuncture isn't going to cut it, but it might reduce the pain somewhat? I've known it to help with pain conditions. I see it as a cheap, harmless, possibly beneficial thing. The mechanism of action is poorly understood, but in my opinion it has to have something to do with the nervous system, which is what you think is going wrong. Depending on cost and so on, even 1% beneficial is good in my view, no matter your goal.

Sorry to add my 2c. It sounds like you need some rest rather than more things to think about, and if you have the energy to do something, you should probably focus on contacting those doctors. Wishing you well in any event.

 

[mpk]

Do you have EDS/CCI?

 

[Exitwings]

Do you have EDS/CCI?

Hi. I'd rather not go into more detail here – believe me, it's convoluted. But no, I don't. If you want to talk more about it I believe my PMs are open.

 

[Exitwings]

That's all fair. Obviously, I don't know the details or anything. Just take this as spitballing from someone who knows nothing about anything. I'm in something of a hopeless situation myself, and I know how I'd feel about some dumbass charging in with half-baked 'solutions', so I'm reluctant to even say anything. I know how it feels to be tired. But fuck it, if there's a chance it could help you, it's worth a try.

It sounds like, with doctors, the problem you're running into is a legal/regulatory one. You *might* have fewer issues with that in farther (non-Western) places. That comes with travel costs, higher risks and so on, but it might be worth googling.

It sounds like acupuncture isn't going to cut it, but it might reduce the pain somewhat? I've known it to help with pain conditions. I see it as a cheap, harmless, possibly beneficial thing. The mechanism of action is poorly understood, but in my opinion it has to have something to do with the nervous system, which is what you think is going wrong. Depending on cost and so on, even 1% beneficial is good in my view, no matter your goal.

Sorry to add my 2c. It sounds like you need some rest rather than more things to think about, and if you have the energy to do something, you should probably focus on contacting those doctors. Wishing you well in any event.

Oh I missed this reply ^_^; I'm having some trouble with the way notifications send me to threads.

No worries, I understand and appreciate the sentiment! I've been looking into acupressure (which I recently realized is a different word, ngl, I was 100% reading it as the same word) and that seems like something I can try at home. I didn't exactly say it in this thread but I'm mostly housebound. Also surprisingly some stretches have been doing wonders for my tension headaches.

Honestly I have a bunch of things I need to do, and because of my situation I have to put off things that to abled people seem like quick/easy tasks that I "can" and should do right away. So when I haven't done these tasks yet I feel the need to make it known that I haven't but also haven't forgotten / I intend to at some point.

I genuinely don't know about the regulation or legal possibilities. I've tried telling surgeons that I'll sign whatever waiver if that'll make them feel better about doing the surgery. And because of desperation I've said I don't even care if the surgeon is competent as long as they do the thing, but now that I'm thinking about it I don't know if I would trust them to actually shave the bone (instead of just sticking the endoscope in and claiming to have)...

 

[Exitwings]

Updates I guess:

- I called 1/3 neurosurgeons. (acquired a random third name from a random nurse). Got the PA on the phone and explained the situation. They said they'd bring it up to the surgeon in the next two weeks and get back to me if the surgeon will consider my case or not.

- meatbody is deteriorating istg. It's grown a mass that has a 2% chance of being a tumor. I've got to set up an appointment/minor surgery to get it removed and then biopsied. I honestly don't know how to even feel about the possibility of cancer. I've been trying to get it set up for the past month but my exhaustion and medical offices' bs...

- I also got my first cavity and had 1 root canal session and did you know it's multiple??? sessions??? haha I hate everything and I'm in hell.

- ketamine has become cheaper but apparently not cheap enough holy fuck. (Did I talk about how it has a genuine chance to mitigate my pain because the only things that do anything are things that cause me semi-conscious states like anesthesia — which is technically what ketamine is? But my insurance doesn't cover it)

- Self medicating because the pain is too much. Wish I had access to more shit – even just money to get shit – but for now I'm just mixing low doses of things and being very careful and writing it all down.

- I really really want fentalogues but that's not happening unless I get really lucky so I'm thinking Night Night method? maybe? hahaha kill me please