Help fund Clare’s surgery for rare brain condition
Donation protected
Hi everyone ❤️
Many of you know that I was diagnosed 6 years ago with a rare brain condition called Arnold Chiari Malformation Type 1. This is a condition which I was born with where my brain basically hangs below the bottom of my skull (whilst everyone else’s brain rests inside their skull). The herniation of my brain is really significant at 17.5mm, which doesn’t sound a lot but it is, and rather than the brain sitting in my skull it rests in the opening of the spinal cord. When this happens it restricts the flow of cerebrospinal fluid (CSF) between the head and the spinal cord.
I was able to manage this condition when I had occasional pain until over a year ago when I collapsed and then spent a month in between hospitals. Ever since then my condition has progressed and my symptoms have worsened significantly to the extent I am in pain every single day. There is no cure for Chiari Malformation and it is a progressive disease which can lead to multiple significant neurological issues affecting the whole central nervous system and spine including mobility, vision, speech, etc. For over 12 months now since being in hospital I have tried many types of medications with not so nice side effects but absolutely nothing is working. I’ve tried alternative therapies heat and ice too and spend my mornings and evenings when in the house with ice caps on.
My pain starts as soon as I waken with severe back of head, neck and shoulder pain, the build of pressure from the CSF blockage spreads to my jaw, ringing in my ears and sometimes down my arms and causes double vision too. It also causes extreme fatigue and overall it is really is affecting my mental and physical health. Many people outside of my family don’t see this daily pain and battle as I always try and fight, smile, exercise and teach through the pain as this is what keeps me going. But with no medication working it has got to the point that I have to consider surgical intervention.
With the combination of my pain not being alleviated and my disease and symptoms will continue to progress, I have decided to have specialist surgery at the Chiari Institute in Barcelona. Unfortunately this surgery for this rare brain condition is not available in the UK. The Chiari Institute have been researching this disease for over 50 years and I have been accepted for surgery which I am going to have in June following a visit to the Institute in April. Clearly I am both frightened and excited at the same time at the thought of the surgery. Like any surgery it might work it might not but any improvement would be a huge relief to me and help me live a more pain free life and aims to stop the progression of the disease which is the most important part.
The surgery is a private surgery and not covered either by the NHS or private health care. Overall the surgery alone costs €20000 (£17000)and with pre and post care and costs, around €30,000. I would like to do what I can to help contribute towards the cost of this surgery have set up a go fund me below. Every £1 would help towards the funding and help my family pay for it overall. I would be so so very grateful for any contributions and I will also be setting up some activities (likely exercise related!) to also help pay for the surgery.
I have provided links below to the Chiari Bridges where you can read more about my condition and to the Chiari Institute in Barcelona. https://chiaribridges.org/ https://institutchiaribcn.com/en/?gclid=EAIaIQobChMI6LCarZCmhAMVI4tQBh0tbgRnEAAYASAAEgIl5vD_BwE
Thank you for reading this far!!! ❤️
Many of you know that I was diagnosed 6 years ago with a rare brain condition called Arnold Chiari Malformation Type 1. This is a condition which I was born with where my brain basically hangs below the bottom of my skull (whilst everyone else’s brain rests inside their skull). The herniation of my brain is really significant at 17.5mm, which doesn’t sound a lot but it is, and rather than the brain sitting in my skull it rests in the opening of the spinal cord. When this happens it restricts the flow of cerebrospinal fluid (CSF) between the head and the spinal cord.
I was able to manage this condition when I had occasional pain until over a year ago when I collapsed and then spent a month in between hospitals. Ever since then my condition has progressed and my symptoms have worsened significantly to the extent I am in pain every single day. There is no cure for Chiari Malformation and it is a progressive disease which can lead to multiple significant neurological issues affecting the whole central nervous system and spine including mobility, vision, speech, etc. For over 12 months now since being in hospital I have tried many types of medications with not so nice side effects but absolutely nothing is working. I’ve tried alternative therapies heat and ice too and spend my mornings and evenings when in the house with ice caps on.
My pain starts as soon as I waken with severe back of head, neck and shoulder pain, the build of pressure from the CSF blockage spreads to my jaw, ringing in my ears and sometimes down my arms and causes double vision too. It also causes extreme fatigue and overall it is really is affecting my mental and physical health. Many people outside of my family don’t see this daily pain and battle as I always try and fight, smile, exercise and teach through the pain as this is what keeps me going. But with no medication working it has got to the point that I have to consider surgical intervention.
With the combination of my pain not being alleviated and my disease and symptoms will continue to progress, I have decided to have specialist surgery at the Chiari Institute in Barcelona. Unfortunately this surgery for this rare brain condition is not available in the UK. The Chiari Institute have been researching this disease for over 50 years and I have been accepted for surgery which I am going to have in June following a visit to the Institute in April. Clearly I am both frightened and excited at the same time at the thought of the surgery. Like any surgery it might work it might not but any improvement would be a huge relief to me and help me live a more pain free life and aims to stop the progression of the disease which is the most important part.
The surgery is a private surgery and not covered either by the NHS or private health care. Overall the surgery alone costs €20000 (£17000)and with pre and post care and costs, around €30,000. I would like to do what I can to help contribute towards the cost of this surgery have set up a go fund me below. Every £1 would help towards the funding and help my family pay for it overall. I would be so so very grateful for any contributions and I will also be setting up some activities (likely exercise related!) to also help pay for the surgery.
I have provided links below to the Chiari Bridges where you can read more about my condition and to the Chiari Institute in Barcelona. https://chiaribridges.org/ https://institutchiaribcn.com/en/?gclid=EAIaIQobChMI6LCarZCmhAMVI4tQBh0tbgRnEAAYASAAEgIl5vD_BwE
Thank you for reading this far!!! ❤️
Organizer
Clare McDonald
Organizer