KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,744
I am just so tired of everything. I have a rare neurological birth defect called chiari malformation (or sometimes you hear it being called cerebellar tonsillar ectopia if the malformation is smaller) where my cerebellum is misplaced. While I do not think this is the cause of every problem I have, as I've dealt with chronic fatigue and CFS for a long time before I started to develop more bizarre neurological symptoms, I believe it is certainly a huge contributor especially as I have rode rollercoasters and been in a car accident which are thought to increase the size of the herniation.
The problem with having something like Chiari though, and CFS, is that no one actually gives a fuck about it- awareness and medical education on such topics extremely limited. This is now the 3rd birth defect that's been unearthed in my case. I already had major surgery once for an extremely large congenial tumor that was not discovered until about a year and a half ago. That surgery and the whole experience surrounding it broke me mentally and left me with worse PTSD. Not even a year after surgery, I have another fucking tumor in my ovary (found incidentally) when I already had FOUR of them removed. I have to just sit here with it while it is small because I can't go through that nightmare again.
Because there are only a handful of clinical research papers on the topic of chiari malformation, the vast majority of GPs and consultants alike do not know ANYTHING about it. The average person has never heard of it. The information published in medical guidelines is extremely outdated and based on incorrect assumptions postulated without any evidence. For example, doctors will falsely tell you the size of the brain defect correlates with symptoms, while chiari patients have complete opposite experiences most of the time if they are not asymptomatic.
The scary thing about this condition is that it has the potential to lead to severe dysautonomia, seizures, and loss of swallowing. There are some people with chiari who are fine one day or have mild symptoms, and then the next they have a seizure or something completely out of left field. The only approved intervention for a chiari malformation is a very risky, invasive brain surgery that honestly does not have great outcomes unless you have also developed fluid cysts in the area. I've read improvement rates of as low as 50% and complications seem to be common.
At the size of my chiari, 99.999% of neurosurgeons will refuse to operate even if it's approaching the medium level. They will tell you to just live with it the rest of your life. After a very heated disagreement with a NHS GP, they agreed to refer me to neurosurgery. There are only a handful of surgeons in the UK who have even done the procedure before or are familiar with it. Of course, they are trying to deny the referral and act like I don't need it. I don't have the capacity to fight with these people anymore and I'm afraid of them. I need someone to advocate for me and I don't have that.
I seriously cannot believe I'm going to spend the rest of my life impaired like this if I stay alive. I basically have 24/7 numbness in my hands, feet, legs, and lower spine. My circulation is shot, tinnitus every waking moment, there's constant pressure in my head, my cognitive abilities especially my memory are really horrible, and my vision has been nothing but an unfocused blur for years now. I can't even remember what it was like to see the world with crystal clear clarity, and now it's like watching through a fishbowl lens filtered with TV static. My body never stops feeling heavy and weighed down by fatigue.
I want to die so bad and yet am also so afraid of it. There is practically no one on this earth who understands my situation and I am all alone almost. Autism and PTSD were already hard enough, but at this point I don't see how I can do anything but rot for the rest of my days. I was very motivated to work and do things as I absolutely hate being in the house and bed all day, but I am always seen as a pain in the ass due to my disabilities, unreliable, and an inconvenience or someone to look down on with pity.
I absolutely hate being useless or unable to do intellectually stimulating things. My concentration and focus is abysmal, and I barely can hold a conversation anymore. Even simple tasks are a challenge for me, I feel as if I constantly let anyone down who I come into contact with. At the same time, I am left to struggle for survival with no practical help. Is this all there is? I realized very quickly that the rest of my life is going to be spent miserable and doing fuck all. None of the things I ever wanted to do will be possible if I can't work.
Even if I was allowed to have the surgery, there's a pretty decent chance it won't help anything or there will be some complication like meningitis or CSF leak. Some people are in even worse agony after they have the surgery and develop heart problems, excruciating headaches, and serious infections. It's basically a risky gamble. I've seen footage of a person who had the surgery at the nearest hospital and it was obvious the surgeon did a botched job, leaving the woman with a nasty scar and complications.
I really hate the life I've been given. If I had N I would drink it right now without hesitation. I seriously cannot believe how unlucky I am to have all these strange health problems that society does not care about fixing. On the surface, I don't even look disabled except I have scoliosis, walk slow, and often forget or slur words. I think people perceive me as lazy and inattentive instead.
Neurological issues are probably one of the worst things that can happen to a person, simply because of how little knowledge we have about them from a scientific perspective. Think how much time, money, and resources have been invested into Alzheimer's disease and other dementia conditions, and yet we are still not even close to finding a cure. I'm forced to sit here and become stupider and more tired, for absolutely no reason, except preserve life at all costs I guess.
Would be so happy to die in my sleep.
The problem with having something like Chiari though, and CFS, is that no one actually gives a fuck about it- awareness and medical education on such topics extremely limited. This is now the 3rd birth defect that's been unearthed in my case. I already had major surgery once for an extremely large congenial tumor that was not discovered until about a year and a half ago. That surgery and the whole experience surrounding it broke me mentally and left me with worse PTSD. Not even a year after surgery, I have another fucking tumor in my ovary (found incidentally) when I already had FOUR of them removed. I have to just sit here with it while it is small because I can't go through that nightmare again.
Because there are only a handful of clinical research papers on the topic of chiari malformation, the vast majority of GPs and consultants alike do not know ANYTHING about it. The average person has never heard of it. The information published in medical guidelines is extremely outdated and based on incorrect assumptions postulated without any evidence. For example, doctors will falsely tell you the size of the brain defect correlates with symptoms, while chiari patients have complete opposite experiences most of the time if they are not asymptomatic.
The scary thing about this condition is that it has the potential to lead to severe dysautonomia, seizures, and loss of swallowing. There are some people with chiari who are fine one day or have mild symptoms, and then the next they have a seizure or something completely out of left field. The only approved intervention for a chiari malformation is a very risky, invasive brain surgery that honestly does not have great outcomes unless you have also developed fluid cysts in the area. I've read improvement rates of as low as 50% and complications seem to be common.
At the size of my chiari, 99.999% of neurosurgeons will refuse to operate even if it's approaching the medium level. They will tell you to just live with it the rest of your life. After a very heated disagreement with a NHS GP, they agreed to refer me to neurosurgery. There are only a handful of surgeons in the UK who have even done the procedure before or are familiar with it. Of course, they are trying to deny the referral and act like I don't need it. I don't have the capacity to fight with these people anymore and I'm afraid of them. I need someone to advocate for me and I don't have that.
I seriously cannot believe I'm going to spend the rest of my life impaired like this if I stay alive. I basically have 24/7 numbness in my hands, feet, legs, and lower spine. My circulation is shot, tinnitus every waking moment, there's constant pressure in my head, my cognitive abilities especially my memory are really horrible, and my vision has been nothing but an unfocused blur for years now. I can't even remember what it was like to see the world with crystal clear clarity, and now it's like watching through a fishbowl lens filtered with TV static. My body never stops feeling heavy and weighed down by fatigue.
I want to die so bad and yet am also so afraid of it. There is practically no one on this earth who understands my situation and I am all alone almost. Autism and PTSD were already hard enough, but at this point I don't see how I can do anything but rot for the rest of my days. I was very motivated to work and do things as I absolutely hate being in the house and bed all day, but I am always seen as a pain in the ass due to my disabilities, unreliable, and an inconvenience or someone to look down on with pity.
I absolutely hate being useless or unable to do intellectually stimulating things. My concentration and focus is abysmal, and I barely can hold a conversation anymore. Even simple tasks are a challenge for me, I feel as if I constantly let anyone down who I come into contact with. At the same time, I am left to struggle for survival with no practical help. Is this all there is? I realized very quickly that the rest of my life is going to be spent miserable and doing fuck all. None of the things I ever wanted to do will be possible if I can't work.
Even if I was allowed to have the surgery, there's a pretty decent chance it won't help anything or there will be some complication like meningitis or CSF leak. Some people are in even worse agony after they have the surgery and develop heart problems, excruciating headaches, and serious infections. It's basically a risky gamble. I've seen footage of a person who had the surgery at the nearest hospital and it was obvious the surgeon did a botched job, leaving the woman with a nasty scar and complications.
I really hate the life I've been given. If I had N I would drink it right now without hesitation. I seriously cannot believe how unlucky I am to have all these strange health problems that society does not care about fixing. On the surface, I don't even look disabled except I have scoliosis, walk slow, and often forget or slur words. I think people perceive me as lazy and inattentive instead.
Neurological issues are probably one of the worst things that can happen to a person, simply because of how little knowledge we have about them from a scientific perspective. Think how much time, money, and resources have been invested into Alzheimer's disease and other dementia conditions, and yet we are still not even close to finding a cure. I'm forced to sit here and become stupider and more tired, for absolutely no reason, except preserve life at all costs I guess.
Would be so happy to die in my sleep.
