Venting The medical system officially gave up on me

[KuriGohan&Kamehameha]

This development solidifies what I need to do now. I know I can't live like this the rest of my life.

Several months ago I had a scan done at a private clinic (because the NHS continued to not do anything) which showed I had scoliosis, a lot of damage to my spine, and a brain abnormality. I got shamed by the NHS GP for using private by the way when they refuse to do anything for me, and essentially accused of playing doctor for going to "unnecessary scans" that weren't indicated when these useless clowns have ignored me for years.

For whatever reason, the competency of the private clinic was called into question and the hospital I was referred to decided they want their radiologist to consult the scans first before they will accept the referrals. Even though the private radiologist is someone with a lot of qualifications, experience, and even research publications, and I highly doubt the NHS one even looked at the scan for more than 2 minutes.

Well the NHS GP got back to me and said the hospital decided they are going to cancel all my referrals, because their radiologist decided that I don't have inflammation in my spine, and rheumatology will not accept any consults unless that box is ticked. That doesn't change the fact that my back is in shambles and something is causing deterioration. I also had a positive ANA bloods result before and the doctor said it is a meaningless test. Then, pray tell, why are you still performing this meaningless test???

The cherry on top is the neurosurgeon has decided that it is completely and totally normal to have a 5 millimeter, visible deformation of your brain, and that I am not a candidate for the only treatment to resolve this (surgery) because it is normal to have a chiari malformation and now won't even call it by that clinical term. Some people don't have symptoms, yes, but I very obviously do. So they basically shut the door forever to the prospect of getting the one thing that had any sort of potential to alleviate anything, and I won't know if it gets worse or I develop a synrix because I will not receive any follow up care.

Now, my official diagnosis is going to get changed back to Chronic Fatigue syndrome which means I won't ever receive shit. The next step apparently is getting referred to the useless chronic fatigue service which is literally just a conversation with an occupational therapist to discuss "pacing yourself" and accepting your permanently disabled life. No thanks.

I'm sick of this bullshit. If I were a cat or a dog, at the first sign of this I would've been given the needle, the cruelty of dragging out the process would've been palpable. Instead, I am expected to live a permanently impaired life where I never fully understand what's causing anything and am offered no help, except being told to deal with it mentally.

I expressed how frustrating it is to struggle with symptoms for years, to try many things, and constantly not improve or be fobbed off and I just got the canned, fake active listening responses from the doctor where they don't really acknowledge what you're saying except an, "oh yes I understand" and quickly jump to another topic to avoid having to address what you just told them.

There is nothing else I can do except kill myself unless I'm willing to accept a permanently impaired life forever. I have lost all hope a long time ago but this confirms everything I already suspected. I am expected to raw dog multiple illnesses the rest of my life and treated like a crazy person. This is so shameful and makes me lose all dignity.

 

[Tesha]

Have you already asked your GP for a referral to a different hospital / consultant for a second opinion? While it's not a legal right to refer you for a second opinion, they normally do.

 

[KuriGohan&Kamehameha]

Have you already asked your GP for a referral to a different hospital / consultant for a second opinion? While it's not a legal right to refer you for a second opinion, they normally do.

Unfortunately there's only one or two consultants who deals with my condition at all to my knowledge. It's incredibly rare. It seems like the few people who know anything about it are in Spain or the USA. They don't even seem to believe that it can cause symptoms like this even though my biological mother had it also and required surgery.

It's so frustrating having something incredibly niche and at the end of the day I'm not even sure if all the issues I have can be attributed to that one thing, it's a gamble I've banked on because I've lost all hope.

 

[Tesha]

@KuriGohan&Kamehameha I'm feeling really angry on your behalf. Please tell me to back off, if I'm overstepping, but as you had the scans done privately, could you get a copy and send them to a specialist abroad?

The NHS is great when you neatly fit into their clearly defined treatment pathways, but if you don't then it can be stupidly frustrating to get yourself heard.

 

[LaVieEnRose]

Lmao I remember the gist of the last neurologist appointment: don't know but I guess there's nothing, so bye, have a good life.

It's very exhausting having to go to doctor and doctor. People will tell you to keep trying and get a hundredth opinion, but the process is so incredibly taxing and draining and they don't tend to make it easier.

 

[DarknessAndDespair]

The NHS is a joke. I had to pay lots of money in private hospitals to get tested and treated, and had to try several ones until finding a good one because many had no clue what was going on in my body. I lost everything and if my condition worsens again I have no way to pay for another expensive procedure. We are left to suffer. And the gaslighting from doctors is just wow. Some will tell you 'it's in your head', 'try to be more positive' and such nonsense.

 

[Throwawayacc3]

The NHS is a joke. I had to pay lots of money in private hospitals to get tested and treated, and had to try several ones until finding a good one because many had no clue what was going on in my body. I lost everything and if my condition worsens again I have no way to pay for another expensive procedure. We are left to suffer. And the gaslighting from doctors is just wow. Some will tell you 'it's in your head', 'try to be more positive' and such nonsense.

It's just a waste of time. Even over 10 years ago when I had my cancer operation I got fast tracked because 1: there was less strain (less people using the service than now) and 2: my gp I had since I was born and I never went to the doctor. The time I did go was when I got fucked with cancer.

The autism stuff is just ring a round the poses as well. It's been over a year and 8/9 months of it was wasted because the GP had no idea what to do apart from some "support groups" for autism. Cunt. Listen. I'm asking for diagnosis not talk with people. Even a moron could decipher that most people with autism don't like groups and people.

I'm fucking tired. I don't think I even give a shit about the credit card debt. I think it's more my 100% brain wanting to "complete" things and have them in order. It's not like I'm buying a house with perfect credit anywhere - no jobs or money.

 

[ropearoundatree]

I'm so sorry to hear of your story, and to learn of your predicament. I do hope they are taking into account, your genetics & mother's history with this, and her need for surgery. Good grief?! I've heard so many tales of terror over NHS recently, or as of late, that I don't know how people there do it? Other than - they don't have, or haven't got any other choice! (so) you're at their mercy then. And poor (potentially) decision-making.

I was listening to a video on youtube by some professor from Cambridge (or something similar). Somewhat credentialled, in other words: & he ususally gives/or does these videos on NARC'S. But so anyway, one day I look or notice, and low & behold! He's got one on Medical Doc's & how they are too, or as well (narcissists).. Boy? Was that enlightening! And my own GP/PCP. When I told him about it, even happened to agree w/me & told me of all of them he has to deal w/& to face on a daily basis. ANd how he always tries to train students, when he gets them,, otherwise How they are their fro the patient's behalf.

 

[KuriGohan&Kamehameha]

@KuriGohan&Kamehameha I'm feeling really angry on your behalf. Please tell me to back off, if I'm overstepping, but as you had the scans done privately, could you get a copy and send them to a specialist abroad?

The NHS is great when you neatly fit into their clearly defined treatment pathways, but if you don't then it can be stupidly frustrating to get yourself heard.

Don't apologise, it's okay. I do have copies of them, but going abroad would probably cost tens of thousands of pounds that aren't available, unfortunately. I've looked into several places, and it seems like this field is full of scammers, with quack science like chiropractors regularly being promoted, and experimental surgeries that aren't actually studied in depth. Then there's some doctors that do the gold standard surgery for hundreds of thousands of USD.

The most commonly done surgery is extremely risky, invasive and not performed in many places unless you have an extreme case which is one reason why the NHS avoids it I suppose. I guess it speaks volumes about how niche and under investigated something is when half the patient advocacy groups are full of scammers promoting sham doctors abroad that do quack procedures like chiropractic adjustments.

I pretty much gave up when I realized that the main method that exists is solely an extremely crude surgery that they won't perform until you develop a life threatening complication. But I've just accepted that at this point, I'm gonna be in zombie mode the rest of my life and no one really cares.

It's just a waste of time. Even over 10 years ago when I had my cancer operation I got fast tracked because 1: there was less strain (less people using the service than now) and 2: my gp I had since I was born and I never went to the doctor. The time I did go was when I got fucked with cancer.

The autism stuff is just ring a round the poses as well. It's been over a year and 8/9 months of it was wasted because the GP had no idea what to do apart from some "support groups" for autism. Cunt. Listen. I'm asking for diagnosis not talk with people. Even a moron could decipher that most people with autism don't like groups and people.

I'm fucking tired. I don't think I even give a shit about the credit card debt. I think it's more my 100% brain wanting to "complete" things and have them in order. It's not like I'm buying a house with perfect credit anywhere - no jobs or money.

Do you want the ASD diagnosis to feel like things are sorted and in order for you, or to access something else you need like benefits? Pretty much everyone I know whose tried to get diagnosed as adults had to ditch the NHS and shell out for private, but some of them got help with it, because they were trying to pursue higher education. Some universities or colleges that take adults will help people sort out a private diagnosis and sometimes even provide some financial assistance for it since they need the "medical evidence" to get disability accommodations. Maybe there is some low-key part time animal related education course/qualification you could get on that would facilitate that.

Unfortunately it's easier for them to fob you off and tell you to do mindfulness and go to groups or whatever than push the diagnosis forward. The same thing happened to me whenever I tried to access any sort of PTSD service and get it put on paper again, since they refuse to document my old diagnosis for some reason. They pretend like I didn't mention that and keep bringing up irrelevant conversation about joining "women's social groups" before quietly adding that there is not really any PTSD help anymore. It's all one generic CBT service that everyone gets referred to, Talkworks. They even got rid of the local support group for survivors of sexual abuse for no reason, so I never even got to go to that either, if I had wanted to.

Lmao I remember the gist of the last neurologist appointment: don't know but I guess there's nothing, so bye, have a good life.

It's very exhausting having to go to doctor and doctor. People will tell you to keep trying and get a hundredth opinion, but the process is so incredibly taxing and draining and they don't tend to make it easier.

People like that neurologist shouldn't even have a job, in my opinion, if they can't even have a pittance of empathy for two seconds or brush aside their bulging ego to admit that there is something they don't understand, rather than surmising that it's nothing.

Yeah I've been getting blamed for years by my partner for "not trying enough." It never seems to end. I will have all the tests done, they'll be inconclusive, doctors won't do anything, and then it's always my fault because I'm not continuing to fumble in the dark more with the medical system after I get told they don't know. I am not joking when I say I've probably had over 20 phone calls with the GP this year and they have no clue, they'll refer somewhere, the referral gets denied because I am missing one specific marker in a blood test or scan and the consultant decides I'm not sick enough for any diagnosis or treatment, then it's back to the drawing board of nothingness again.

From doing extensive research of my own too, it doesn't seem like there's anything I can do. But people tell me just don't give up, just keep trying, I don't know exactly what I'm supposed to try when all options have been exhausted. It's this weird limbo where I'm absolutely not allowed under any circumstances to kill myself, but because doctors don't know what to do and I don't know what else can be done I'm expected to just deal cause, "it could be worse/fatal."

I think the average doctor is just too stupid to understand that just because they can't find a specific pathology that correlates with tickboxes of x criteria means you have y disease, doesn't mean the symptoms and impact on quality of life suddenly stop existing. They act like this should be thrilling news to someone who is still experiencing deleterious, harmful symptoms. When it clearly isn't.

The other day I got recommended a video by a former surgeon (trained at an extremely prestigious US hospital) who quit his job doing spinal surgery because in his own words, "the people who recovered from having back pain ate right exercised and socialized, but the ones who didn't don't make good lifestyle choices. Therefore doing spinal surgery is often a financial scam and I don't want to participate in unnecessary scams anymore." And people in the comments ate that right up. A person with clear spinal pathology is not going to be cured because of their social life or diet, sure it might slow things down or help aid in healing an injury, but I couldn't believe a supposedly top surgeon now believes all spinal surgery is useless because a number of patients he consulted with one or two time no longer needed it. What even is going on in the healthcare industry anymore.

The NHS is a joke. I had to pay lots of money in private hospitals to get tested and treated, and had to try several ones until finding a good one because many had no clue what was going on in my body. I lost everything and if my condition worsens again I have no way to pay for another expensive procedure. We are left to suffer. And the gaslighting from doctors is just wow. Some will tell you 'it's in your head', 'try to be more positive' and such nonsense.

I hope you are doing any better now, it's a complete disgrace. I went through the same thing, though fortunately the final cost of my procedure wasn't as expensive as anticipated. The NHS definitely wouldn't have performed my surgery in the way I got it in the end, because it requires a high level of skill, and they had let my tumor grow to a size bigger than a grapefruit at that point.

So I completely understand how dazed and angry you must feel about having to shell out so much money for a private procedure and tests, when the NHS really should just do their jobs in the first place.

Looked back through my posts and remember you commented on my thread about 青木ヶ原 forest, I know you lived in Japan for awhile and the doctors there must have made you livid with their kampo, gaman tsuyoi mentality, and other bs. I hope your health is doing a bit better since your treatments in the private hospital.

If I had more money I would just want to blow it in Japan for awhile and then ctb, but with every passing day my cognitive abilities get worse and I'm always forgetting all of my Japanese skills.

 

[DarknessAndDespair]

Don't apologise, it's okay. I do have copies of them, but going abroad would probably cost tens of thousands of pounds that aren't available, unfortunately. I've looked into several places, and it seems like this field is full of scammers, with quack science like chiropractors regularly being promoted, and experimental surgeries that aren't actually studied in depth. Then there's some doctors that do the gold standard surgery for hundreds of thousands of USD.

The most commonly done surgery is extremely risky, invasive and not performed in many places unless you have an extreme case which is one reason why the NHS avoids it I suppose. I guess it speaks volumes about how niche and under investigated something is when half the patient advocacy groups are full of scammers promoting sham doctors abroad that do quack procedures like chiropractic adjustments.

I pretty much gave up when I realized that the main method that exists is solely an extremely crude surgery that they won't perform until you develop a life threatening complication. But I've just accepted that at this point, I'm gonna be in zombie mode the rest of my life and no one really cares.


Do you want the ASD diagnosis to feel like things are sorted and in order for you, or to access something else you need like benefits? Pretty much everyone I know whose tried to get diagnosed as adults had to ditch the NHS and shell out for private, but some of them got help with it, because they were trying to pursue higher education. Some universities or colleges that take adults will help people sort out a private diagnosis and sometimes even provide some financial assistance for it since they need the "medical evidence" to get disability accommodations. Maybe there is some low-key part time animal related education course/qualification you could get on that would facilitate that.

Unfortunately it's easier for them to fob you off and tell you to do mindfulness and go to groups or whatever than push the diagnosis forward. The same thing happened to me whenever I tried to access any sort of PTSD service and get it put on paper again, since they refuse to document my old diagnosis for some reason. They pretend like I didn't mention that and keep bringing up irrelevant conversation about joining "women's social groups" before quietly adding that there is not really any PTSD help anymore. It's all one generic CBT service that everyone gets referred to, Talkworks. They even got rid of the local support group for survivors of sexual abuse for no reason, so I never even got to go to that either, if I had wanted to.



People like that neurologist shouldn't even have a job, in my opinion, if they can't even have a pittance of empathy for two seconds or brush aside their bulging ego to admit that there is something they don't understand, rather than surmising that it's nothing.

Yeah I've been getting blamed for years by my partner for "not trying enough." It never seems to end. I will have all the tests done, they'll be inconclusive, doctors won't do anything, and then it's always my fault because I'm not continuing to fumble in the dark more with the medical system after I get told they don't know. I am not joking when I say I've probably had over 20 phone calls with the GP this year and they have no clue, they'll refer somewhere, the referral gets denied because I am missing one specific marker in a blood test or scan and the consultant decides I'm not sick enough for any diagnosis or treatment, then it's back to the drawing board of nothingness again.

From doing extensive research of my own too, it doesn't seem like there's anything I can do. But people tell me just don't give up, just keep trying, I don't know exactly what I'm supposed to try when all options have been exhausted. It's this weird limbo where I'm absolutely not allowed under any circumstances to kill myself, but because doctors don't know what to do and I don't know what else can be done I'm expected to just deal cause, "it could be worse/fatal."

I think the average doctor is just too stupid to understand that just because they can't find a specific pathology that correlates with tickboxes of x criteria means you have y disease, doesn't mean the symptoms and impact on quality of life suddenly stop existing. They act like this should be thrilling news to someone who is still experiencing deleterious, harmful symptoms. When it clearly isn't.

The other day I got recommended a video by a former surgeon (trained at an extremely prestigious US hospital) who quit his job doing spinal surgery because in his own words, "the people who recovered from having back pain ate right exercised and socialized, but the ones who didn't don't make good lifestyle choices. Therefore doing spinal surgery is often a financial scam and I don't want to participate in unnecessary scams anymore." And people in the comments ate that right up. A person with clear spinal pathology is not going to be cured because of their social life or diet, sure it might slow things down or help aid in healing an injury, but I couldn't believe a supposedly top surgeon now believes all spinal surgery is useless because a number of patients he consulted with one or two time no longer needed it. What even is going on in the healthcare industry anymore.


I hope you are doing any better now, it's a complete disgrace. I went through the same thing, though fortunately the final cost of my procedure wasn't as expensive as anticipated. The NHS definitely wouldn't have performed my surgery in the way I got it in the end, because it requires a high level of skill, and they had let my tumor grow to a size bigger than a grapefruit at that point.

So I completely understand how dazed and angry you must feel about having to shell out so much money for a private procedure and tests, when the NHS really should just do their jobs in the first place.

Looked back through my posts and remember you commented on my thread about 青木ヶ原 forest, I know you lived in Japan for awhile and the doctors there must have made you livid with their kampo, gaman tsuyoi mentality, and other bs. I hope your health is doing a bit better since your treatments in the private hospital.

If I had more money I would just want to blow it in Japan for awhile and then ctb, but with every passing day my cognitive abilities get worse and I'm always forgetting all of my Japanese skills.

I hope you can at least find a way to minimise the pain, but I can't even imagine how tired you must feel too.
I am doing better, however not fully cured and the surgeon said there isn't a full cure. If it comes back, I am done for. I lived in Japan for a good few years but the critical health condition hit when I was in the UK. I had to leave everything behind since I was bedbound and had return to my homeland with family.
The worst part of having a "rare" illness is that the people around you don't really understand. I can't blame them but feels very isolating.
If I had a lot of money right now I would just probably try to get the holy grail and leave in peace.
Have you lived in Japan as well?

 

[LaVieEnRose]

People like that neurologist shouldn't even have a job, in my opinion, if they can't even have a pittance of empathy for two seconds or brush aside their bulging ego to admit that there is something they don't understand, rather than surmising that it's nothing.

If lack of empathy were a disqualifier then whole swathes of the healthcare industry would be summarily wiped out.

Empathy erosion is a serious problem and as far as I understand all environments that doctors work in starting back in medical school foster that process.

Validating symptoms is something a lot of doctors really have a lot of problems with and clearly isn't something that is emphasized in their education.

Now who do I turn to to make the suggestion that that change?

But people just don't care in general. They just don't care. Maybe that's justifiable because people's capacity to care is limited necessarily but then that also limits the demands that they are entitled to make of you.

It's this weird limbo where I'm absolutely not allowed under any circumstances to kill myself, but because doctors don't know what to do and I don't know what else can be done I'm expected to just deal cause, "it could be worse/fatal."

It's definitely a paradoxical situation. The lack of empathy shown for people who are forced to undergo coercive impediments to their CTB shows that their well-being was never thea paramount thing. What is is unclear.