So we all know that generally one thing leads to another with relation to our health. The problem for many of us is how to stop this from happening. But what if we feel we know how to stop it but it's out of our control, then what do we do?
I have a dilemma at he minute of how I can convince certain specialists, counsellors and pain clinic on how I feel I can be best treated. I am shocked that not all of the information on me is not always there between different health professionals. As I have had to wait sooooooo long inbetween tests and appt.'s it's like I've fallen through the cracks. I am not getting the help I need when I need it.
If the services available to me actually listened to me and if all the services were actually properly linked then i might actually get the correct treatment. I am not a trained health professional so my ideas/views are not valid, but it's my body, it's me who is suffering, I should have a greater say in the treatment and medication that I recieve. If I convince one service to give me what I need then another service may not go with it and then well I'm stuck, I need all available things to be going in the same direction but they won't listen to what I believe will help me, they have the theory from their textbooks and well they have to stick to it, but not all cases are in the theory and services should be more flexible to accomodate people like me.
The only way I can get what I need is to go private, which I can't afford, it's like I'm a lost cause and I know I'm not alone in recieving similar treatment and similar care where we are basically left alone to suffer. it's not good enough but what can we do? Chronic pain and problems that are yet to be discovered/treatable/curable aren't seen as important and we are left alone to suffer.
Moan over, please feel free to comment if you have suffered the same fate as me.
Thanks for reading
Showing posts with label NHS. Show all posts
Showing posts with label NHS. Show all posts
Monday, 20 June 2011
Friday, 10 June 2011
Chronic Pain - brief description and my story
I could of given this article many different and clever eye catching titles but wanted to keep it simple. I suffer from, among other things, severe chronic pain. After nearly 3 years of scans and specialist appointments I have been given a vague diagnosis of the cause of my pain, however the cause of the pain has become irrelevant as the pain itself, the nerves sending, the part of the brain receiving, has dramatically increased. For those reading unaware of 'severe chronic pain' here is a rough (im not a doctor) explanation..
In our brain there are parts for receiving touch and pain etc, the part for our hands is the largest, when we injure/feel pain in say our arm the nerve/pain signals are sent to this part of the brain. When we injure something and the problem/cause of pain cannot be found/corrected then these nerves/pain signals go on a continous loop, the amount of nerves increase that go from the part injured and also the receiving part of the brain grows. So in my case the area in my brain that is for shins has enlarged to ten times the size and when you add this to a larger number of nerves that are going from my shin to my brain and that they are doing this repeatedly then it equals rather severe chronic pain.
The vague diagnosis I have of the problem in my shins is periostitis, this is basically an inflammation/tear of the periosteum, the periosteum is the layer (tissue) wrapped around the bone, it's main purpose is to heal the bone when it breaks. However this periosteum doesn't have healing properties of it's own. The reason I say vague diagnosis is that periostitis doesn't show up on scans, well it will if it is actually severely inflamed, say after jogging. So I have a clinical diagnosis, a symptomatic diagnosis. With the NHS it is all about money and urgency, which is how it has to be. But there's the problem right there for people who haven't had a diagnosis, the after effects. My problem, periostitis, can be solved by surgery. Whereby they slice down my shin and tear it completely then add a skin graft, whereby (remember im not a doctor) the cells and tissue from the skin graft does the healing. However I wasn't offered this surgery as I was told it may heal in time, which doesn't help me when I'm in constant pain and unable to work, walk or even sit with my legs bent due to pain. So it may heal in time and in the mean time we'll send you to a vascular specialist, pointless waste of NHS money and time. Money and time that could of paid for surgery.
Now here is where it went from bad to horrendous. It took four physio's, around a 100 doctor (GP) appointments and four specialists two years to refer me to a place I didn't even know existed, a pain clinic. However a little part of me wishes I had never heard and been referred there. The doctor there suggested steroid root nerve block injections to block the pain signals, brilliant I thought where do I sign the consent, I mean who wouldn't if they thought it may have the slightest chance of making the constant pain go away. I was informed it was experimental and I was informed it may not work and not to 'get my hopes up'. So on the 16th December 2010 I lay there with my bum crack out infront of a room full of around 10 people, no idea why 10 people needed to be there. Some where in charge of the x-ray so the doctor knew where to stab, not encouraging when a massive needle is going into your spine and it's being directed by repeated x-rays. The injections didn't hurt no where near as much as I was told or thought they would. I lay in the bed afterwards and the kind nurses bring me coffee and toast and then stand there in the corner to entertain me as I hear their gossip and talk of last night's TV, I mean that must be why they stand there and talk for so long. The woman next to me stands up out of bed and rejoices at the relief she's had. I lay there however with pain in my back which is what to be expected when you've just had two injections in the spine. My shins still hurting at the time but I'm reassured that will ease as the steroids do their magic and that the pain in my back will ease within a week.
Two weeks later, still pain in my shins and now a new pain in my lower back, the steroids hadn't done their magic and the pain in my lower back hadn't eased. A week later and still the same, I had another specialist appointment but this time with a 'lower limb specialist', turns out the first guy I saw was a hip specialist, ahh the NHS, always doing new things to delight us. In the appointment I mentioned my back pain and within 2 seconds the specialist says with complete conviction 'you don't have a shin problem', the pain has been referred from you're back. Erm.. I'm not a specialist but I had no pain in my back for the entire shin pain duration and now you're saying I don't have a shin problem. Hmmm I went along with it, I mean they are the specialists after all. She then says something you always want to hear after a procedure 'you shouldn't have had the injections without first having an MRI of your back and a nerve conduction study' brilliant.
So.. I have the MRI, well I have several, of my back, neck and head and I also have the nerve conduction study. MRI's return with small disc bulges, for which I am told are harmless and to ignore, I mean for me if something isn't what it's suppose to be then I'm pretty sure it shouldn't be ignored, but anyway.. The nerve conductions shows bilateral lumbosacral polyradiculopathy, clusters of damaged nerves either side of the spine. These damaged nerves are not significant enough to be causing the leg pain, however they are significant enough to be causing the lower back pain. Now it doesn't take a genius or specialist to figure this one out, the damaged nerves are a result of the injections. So.. the pain clinic designed to stop pain has actually caused more pain, again delightful.
Now I won't go into the full psychology of this (Im a psychology graduate by the way) but when you are in a group, no matter the size, you tend to defend your own. Well the NHS definately does this, whenever I have mentioned that the injections caused the nerve damage they either change the topic or say that it could of been many things. Erm.. no it couldn't, just admit that the doctor did it, admit that I should have had studies done first that would have showed my nerves were already fragile due to the chronic pain and admit your collective neglegance. I say collective as I don't know who directly to blame. The doctor at the pain clinic would be an obvious choice as he should have seen I hadn't had any tests on my back, the specialists are equally to blame for not sending me for the scans. But at the end of the day six months after having the injections I am here sat with my legs up resting, having had to lay on my back to rest during this with my laptop on a table as I can't rest the laptop on my legs, in pain, fairly drugd up, so I do apologise if there any mistakes, my medication seems to effect everything, slurring my words as if I've had ten pints is my favourite, although I suppose I'm not exactly being marked for this.
Now I have to go full circle, I have to be referred again to a specialist for my shins and plead with him for either the surgery or for an MRI while my legs are inflamed. The only way to plead in the NHS however is to go private, then they change their tune. Anyone want to help me raise the money to go private, if I have appointment, MRI, appointment, Surgery then that could be as much as £5000. It's either that or live a life where I'm laid up all day everyday having the occasional good day where I can hobble with crutches to the amazingly far distance of 40 yards. I'm sure either living at my parents or living in a council house will be lovely. i'm sure I'll love that my kids (I don't have kids yet) want me to go out with them or play with them and I can't will be the best feeling in the whole world.
I've never really agreed with people hating on the NHS, however I do feel just a little different on that matter now. I've plowed on up until this point for one main reason, my amazing, caring beautiful girlfriend who has for some reason stood by me as I've gained weight (inevitable as can't exercise and did used to go to the gym three times a week, football twice a week etc etc), been in horrible moods, suffered a level of depression I had studied but never fully understood until experiencing it, she's still here being my carer, being my rock, making me smile, I wouldn't be here moaning on a blog if it wasn't for her.
Thanks for reading, let me know your chronic pain stories, we need to raise awareness and we need to prevent stories like mine from happening again and again and again and again.
Thank you
In our brain there are parts for receiving touch and pain etc, the part for our hands is the largest, when we injure/feel pain in say our arm the nerve/pain signals are sent to this part of the brain. When we injure something and the problem/cause of pain cannot be found/corrected then these nerves/pain signals go on a continous loop, the amount of nerves increase that go from the part injured and also the receiving part of the brain grows. So in my case the area in my brain that is for shins has enlarged to ten times the size and when you add this to a larger number of nerves that are going from my shin to my brain and that they are doing this repeatedly then it equals rather severe chronic pain.
The vague diagnosis I have of the problem in my shins is periostitis, this is basically an inflammation/tear of the periosteum, the periosteum is the layer (tissue) wrapped around the bone, it's main purpose is to heal the bone when it breaks. However this periosteum doesn't have healing properties of it's own. The reason I say vague diagnosis is that periostitis doesn't show up on scans, well it will if it is actually severely inflamed, say after jogging. So I have a clinical diagnosis, a symptomatic diagnosis. With the NHS it is all about money and urgency, which is how it has to be. But there's the problem right there for people who haven't had a diagnosis, the after effects. My problem, periostitis, can be solved by surgery. Whereby they slice down my shin and tear it completely then add a skin graft, whereby (remember im not a doctor) the cells and tissue from the skin graft does the healing. However I wasn't offered this surgery as I was told it may heal in time, which doesn't help me when I'm in constant pain and unable to work, walk or even sit with my legs bent due to pain. So it may heal in time and in the mean time we'll send you to a vascular specialist, pointless waste of NHS money and time. Money and time that could of paid for surgery.
Now here is where it went from bad to horrendous. It took four physio's, around a 100 doctor (GP) appointments and four specialists two years to refer me to a place I didn't even know existed, a pain clinic. However a little part of me wishes I had never heard and been referred there. The doctor there suggested steroid root nerve block injections to block the pain signals, brilliant I thought where do I sign the consent, I mean who wouldn't if they thought it may have the slightest chance of making the constant pain go away. I was informed it was experimental and I was informed it may not work and not to 'get my hopes up'. So on the 16th December 2010 I lay there with my bum crack out infront of a room full of around 10 people, no idea why 10 people needed to be there. Some where in charge of the x-ray so the doctor knew where to stab, not encouraging when a massive needle is going into your spine and it's being directed by repeated x-rays. The injections didn't hurt no where near as much as I was told or thought they would. I lay in the bed afterwards and the kind nurses bring me coffee and toast and then stand there in the corner to entertain me as I hear their gossip and talk of last night's TV, I mean that must be why they stand there and talk for so long. The woman next to me stands up out of bed and rejoices at the relief she's had. I lay there however with pain in my back which is what to be expected when you've just had two injections in the spine. My shins still hurting at the time but I'm reassured that will ease as the steroids do their magic and that the pain in my back will ease within a week.
Two weeks later, still pain in my shins and now a new pain in my lower back, the steroids hadn't done their magic and the pain in my lower back hadn't eased. A week later and still the same, I had another specialist appointment but this time with a 'lower limb specialist', turns out the first guy I saw was a hip specialist, ahh the NHS, always doing new things to delight us. In the appointment I mentioned my back pain and within 2 seconds the specialist says with complete conviction 'you don't have a shin problem', the pain has been referred from you're back. Erm.. I'm not a specialist but I had no pain in my back for the entire shin pain duration and now you're saying I don't have a shin problem. Hmmm I went along with it, I mean they are the specialists after all. She then says something you always want to hear after a procedure 'you shouldn't have had the injections without first having an MRI of your back and a nerve conduction study' brilliant.
So.. I have the MRI, well I have several, of my back, neck and head and I also have the nerve conduction study. MRI's return with small disc bulges, for which I am told are harmless and to ignore, I mean for me if something isn't what it's suppose to be then I'm pretty sure it shouldn't be ignored, but anyway.. The nerve conductions shows bilateral lumbosacral polyradiculopathy, clusters of damaged nerves either side of the spine. These damaged nerves are not significant enough to be causing the leg pain, however they are significant enough to be causing the lower back pain. Now it doesn't take a genius or specialist to figure this one out, the damaged nerves are a result of the injections. So.. the pain clinic designed to stop pain has actually caused more pain, again delightful.
Now I won't go into the full psychology of this (Im a psychology graduate by the way) but when you are in a group, no matter the size, you tend to defend your own. Well the NHS definately does this, whenever I have mentioned that the injections caused the nerve damage they either change the topic or say that it could of been many things. Erm.. no it couldn't, just admit that the doctor did it, admit that I should have had studies done first that would have showed my nerves were already fragile due to the chronic pain and admit your collective neglegance. I say collective as I don't know who directly to blame. The doctor at the pain clinic would be an obvious choice as he should have seen I hadn't had any tests on my back, the specialists are equally to blame for not sending me for the scans. But at the end of the day six months after having the injections I am here sat with my legs up resting, having had to lay on my back to rest during this with my laptop on a table as I can't rest the laptop on my legs, in pain, fairly drugd up, so I do apologise if there any mistakes, my medication seems to effect everything, slurring my words as if I've had ten pints is my favourite, although I suppose I'm not exactly being marked for this.
Now I have to go full circle, I have to be referred again to a specialist for my shins and plead with him for either the surgery or for an MRI while my legs are inflamed. The only way to plead in the NHS however is to go private, then they change their tune. Anyone want to help me raise the money to go private, if I have appointment, MRI, appointment, Surgery then that could be as much as £5000. It's either that or live a life where I'm laid up all day everyday having the occasional good day where I can hobble with crutches to the amazingly far distance of 40 yards. I'm sure either living at my parents or living in a council house will be lovely. i'm sure I'll love that my kids (I don't have kids yet) want me to go out with them or play with them and I can't will be the best feeling in the whole world.
I've never really agreed with people hating on the NHS, however I do feel just a little different on that matter now. I've plowed on up until this point for one main reason, my amazing, caring beautiful girlfriend who has for some reason stood by me as I've gained weight (inevitable as can't exercise and did used to go to the gym three times a week, football twice a week etc etc), been in horrible moods, suffered a level of depression I had studied but never fully understood until experiencing it, she's still here being my carer, being my rock, making me smile, I wouldn't be here moaning on a blog if it wasn't for her.
Thanks for reading, let me know your chronic pain stories, we need to raise awareness and we need to prevent stories like mine from happening again and again and again and again.
Thank you
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