Help me defeat "the worst pain mankind can endure"
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2021 was meant to be the best year of my life but on the 12th January little did I know it would change for good...
All starting with a tingling pain in my lip, to endless doctors trips, emergency hospital visits, MRI scans, followed by more and more tests. Oh and PAIN…how could I forget to mention the pain! The most agonising pain I had ever experienced.
This year I was diagnosed with a condition called Trigeminal Neuralgia also referred to as the 'suicide disease'. I am one in a million...(literally) to get this life changing disease and it has completely consumed my life. Although the disease is more common in over 50's to have it at such a young age is very rare. At 28 years of age my life has become defined by this incurable illness. I can’t brush my hair or teeth, eat, sleep, stand in the wind, touch my face all without feeling the intense pain of being electrocuted across my face. The severe burning that lingers after the attacks is enough to take your breath away. The flare ups leave you scared to be in your own mind, the pain simply driving you to insanity and wishing for an eject button. I think for me the hardest thing is looking fine on the outside but inside the pain cripples you.
The medication has been helping but unfortunately the side effects are causing more harm than good. Shaky hands, memory loss, organ trouble, double vision has made day to day life a complete struggle. My insides now being affected and being told I could end up with lasting damage if I remain on the medication too long.
WHY ME?! It’s the question everyone asks when they get sick. Why me? Why did I have to be rare? Why did I have to get sick? Well it appears for me that although it’s only made an appearance this year this condition has been waiting to strike. 10 years ago I contracted glandular fever, spent many nights in hospital and a long recovery process. Little did I know that it would be the starting point of my battle with my health. It battered my immune and nervous system and three quinsy’s later it’s now given me this.
My lifeline…recently I went to see a private neurosurgeon to get some answers to find out exactly what this condition is and what my future looks like. We looked over my MRI scans and could see the blood vessels surrounding the root of the nerve. He told me that he would like to conduct a major operation called: Microvascular decompression. In short this would be an invasive operation which would relieve the pressure placed on the trigeminal nerve by blood vessels that are touching the nerve or are wrapped around it. The surgeon makes an incision in your scalp, behind your ear, and removes a small piece of skull bone. They then separate the blood vessel(s) from the trigeminal nerve using an artificial pad or a sling constructed from adjoining tissue. It will mean recovering in intensive care and then hoping to be discharged to recuperate at home. This surgery could offer immediate pain relief - most patients wake up to find their pain is gone. It is the only procedure offered that gives long term relief - there is no cure for TN but this could give me precious time to enjoy my life with my family in the hope a cure can be found. Unfortunately due to the NHS being so overwhelmed waiting times could mean 12-18 months and that doesn't include the risk of being cancelled due to no ICU beds. This has left me with no choice but to seek private treatment. So this is where I am asking for your help to raise a portion of the £18,000 towards my surgery- to which I have already received a very kind contribution from an anonymous source. I never thought I'd be in the situation to do this - I never thought I'd have to ask people for help. I cannot keep living my life in pain, suffering behind a smile, too exhausted to leave the house.
I never thought I’d wake up on that 12th January with a pain that would change my life. I never thought that I would now be faced with major surgery to try and give me 10 years of no pain to allow me to have a family. I never thought that I would have to ask people to help me live a pain free life. But unfortunately there is no other way. This is my lifeline - the nearest thing to a cure. This operation could allow me to get back my freedom and to love my life again pain free. To be the person I had always dreamt of being, to be a wife, a daughter, a grand-daughter, an auntie and one day a mum! This could be the start to my very own beginning.
I thank you from the bottom of my heart for reading my story.
I never thought I'd be in this situation. I have one bit of advice make sure you live your life because you read these stories and you never think it could be you. You really don't know what is going to happen tomorrow so live for today. And be kind - we are all fighting a battle somehow invisible illnesses are real.
Laura x
This content is exclusively managed by Caters News. To license or use in a commercial player please contact [email redacted] or +44 [phone redacted] / [phone redacted]
All starting with a tingling pain in my lip, to endless doctors trips, emergency hospital visits, MRI scans, followed by more and more tests. Oh and PAIN…how could I forget to mention the pain! The most agonising pain I had ever experienced.
This year I was diagnosed with a condition called Trigeminal Neuralgia also referred to as the 'suicide disease'. I am one in a million...(literally) to get this life changing disease and it has completely consumed my life. Although the disease is more common in over 50's to have it at such a young age is very rare. At 28 years of age my life has become defined by this incurable illness. I can’t brush my hair or teeth, eat, sleep, stand in the wind, touch my face all without feeling the intense pain of being electrocuted across my face. The severe burning that lingers after the attacks is enough to take your breath away. The flare ups leave you scared to be in your own mind, the pain simply driving you to insanity and wishing for an eject button. I think for me the hardest thing is looking fine on the outside but inside the pain cripples you.
The medication has been helping but unfortunately the side effects are causing more harm than good. Shaky hands, memory loss, organ trouble, double vision has made day to day life a complete struggle. My insides now being affected and being told I could end up with lasting damage if I remain on the medication too long.
WHY ME?! It’s the question everyone asks when they get sick. Why me? Why did I have to be rare? Why did I have to get sick? Well it appears for me that although it’s only made an appearance this year this condition has been waiting to strike. 10 years ago I contracted glandular fever, spent many nights in hospital and a long recovery process. Little did I know that it would be the starting point of my battle with my health. It battered my immune and nervous system and three quinsy’s later it’s now given me this.
My lifeline…recently I went to see a private neurosurgeon to get some answers to find out exactly what this condition is and what my future looks like. We looked over my MRI scans and could see the blood vessels surrounding the root of the nerve. He told me that he would like to conduct a major operation called: Microvascular decompression. In short this would be an invasive operation which would relieve the pressure placed on the trigeminal nerve by blood vessels that are touching the nerve or are wrapped around it. The surgeon makes an incision in your scalp, behind your ear, and removes a small piece of skull bone. They then separate the blood vessel(s) from the trigeminal nerve using an artificial pad or a sling constructed from adjoining tissue. It will mean recovering in intensive care and then hoping to be discharged to recuperate at home. This surgery could offer immediate pain relief - most patients wake up to find their pain is gone. It is the only procedure offered that gives long term relief - there is no cure for TN but this could give me precious time to enjoy my life with my family in the hope a cure can be found. Unfortunately due to the NHS being so overwhelmed waiting times could mean 12-18 months and that doesn't include the risk of being cancelled due to no ICU beds. This has left me with no choice but to seek private treatment. So this is where I am asking for your help to raise a portion of the £18,000 towards my surgery- to which I have already received a very kind contribution from an anonymous source. I never thought I'd be in the situation to do this - I never thought I'd have to ask people for help. I cannot keep living my life in pain, suffering behind a smile, too exhausted to leave the house.
I never thought I’d wake up on that 12th January with a pain that would change my life. I never thought that I would now be faced with major surgery to try and give me 10 years of no pain to allow me to have a family. I never thought that I would have to ask people to help me live a pain free life. But unfortunately there is no other way. This is my lifeline - the nearest thing to a cure. This operation could allow me to get back my freedom and to love my life again pain free. To be the person I had always dreamt of being, to be a wife, a daughter, a grand-daughter, an auntie and one day a mum! This could be the start to my very own beginning.
I thank you from the bottom of my heart for reading my story.
I never thought I'd be in this situation. I have one bit of advice make sure you live your life because you read these stories and you never think it could be you. You really don't know what is going to happen tomorrow so live for today. And be kind - we are all fighting a battle somehow invisible illnesses are real.
Laura x
This content is exclusively managed by Caters News. To license or use in a commercial player please contact [email redacted] or +44 [phone redacted] / [phone redacted]
Organizer
Troy Cruz
Organizer
England
