#CareForCarley - Lifechanging Neuro/Spinal Surgery
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I have a rare connective tissue disorder that made my neck become dangerously unstable and I am in need of help please. Click on READ MORE below for the full story ....
In the last few weeks I had to have TWO Life Changing Neuro/Spinal Surgeries as the top two vertebrae in my neck were "severely unstable” and had dropped backward into my brainstem (Atlanto Axial Instability). Also, part of my top vertebrae was occluding one of the main veins out of my brain and this piece of bone needed removing as well.
I was in sheer agony from the neck being so unstable. I started choking on food as my swallow reflex was affected, breathing was affected, the muscles in my throat were constricting like I was being strangled, and many more terrifying symptoms were happening!
I have been unable to work for 5 years, as I've been so ill, and couldn't afford these surgeries but had no choice but to proceed with them as I was declining further. I couldn't fundraise either and as my vision became so bad and the surgery was offered to me within 2 weeks.
We managed to put some money towards the operations but had to temporarily borrow the rest, as the surgeries are private and unfortunately not yet available on the NHS.
Now I am trying to recover but have the extreme stress and worry of needing to pay back what I owe.
My operation's have already given me so many positive changes but I still have a long recovery ahead of me.
As well as fundraising to pay back the money that I owe I need enough to cover future 'specialised' post operative scans and enough to be able to have Intensive Rehabilitation & Physiotherapy which is also not available on the NHS, but is crucial to aid recovery.
I have factored all of this into the fundraising amount.
I would be grateful for ANY help that I can get with this fundraiser, even if its a small amount that you can donate, and I thank you in advance from the bottom of my heart. xx
My operation's have already given me so many positive changes but I still have a long recovery ahead of me.
I am still recovering from the surgeries and am in the bed the majority of the day but am thrilled with the differences so far.
I can be upright for longer now and able to mobilise more easily with improved co-ordination.
A lot of the severe symptoms I had before surgery have gone and I feel that I now have a chance to get my life back for not only my sake but for my amazing husband who's been by my side supporting me for the last 11 years. I have a 90 year old grandmother that I need to look after and a father with Alzhiemers that I would like to see more of and hopefully now I will have that chance!!
I now have a chance to get my old life back that I miss so much, a chance of being independent again, possibly be able to work and drive again in the future.
My old life .......
I need all of the help I can get and I know that there are some very caring individuals out there so here goes.....
Ive actually been ill for 19 years and was left undiagnosed for 16 of those.
I suffer from The 'Hypermobile' Type of Ehlers Danlos Syndrome
Figures suggest....
1 in 5,000 people have the condition
1 in 15 of these 5,000 go on to develop Cranio Cervical Instability
Ehlers Danlos is a connective tissue disorder which not only effects collagen, it makes ligaments lax and can create defects that lead to abnormal structural changes with the skeleton. If my ligaments get damaged or overstretched they are unable to repair correctly along with many other issues.
Over the last 19 years this has wreaked havoc on my life and left me eventually housebound and very isolated.
I would have always had this condition but it was triggered after a whiplash and the neck just couldn’t repair after the injury, my ligaments in my neck became severely lax and the neck became dangerously unstable.
I became mostly bed bound for the first 3 years and unable to see properly. I had to crawl to use the toilet or try to get to the kitchen and I was left with blurred vision, incredible fatigue where any little task would leave me very ill, balance issues where I felt like I was constantly drunk or drugged and would fall all over the place, memory loss where I would forget peoples names that I had known all of my life.
I've suffered jaw subluxations, more than likely because the neck was out of alignment, that were agony where the jaw would sublux so much the cartilage would move out of place and I have needed multiple operations to fix my jaw which have also been very painful & distressing.
This started at 25 yrs old. I was so ill my life changed at this point and its just got worse ever since.
To cut a long story short, the last 5 years I declined dramatically . I had previously been able to work at a push, but 5 years ago I became so ill that I wasn’t even able to do that. I have relied on my husband to support me and we have been unable to live a normal life and have any family of our own due to my condition.
Brainstem compression, along with Vagus nerve compression at the level of the C1 Vertebrae, made me develop issues with my autonomic nervous system where my blood pressure would go haywire which would lead to my blood pressure dropping where I would collapse......
Its like a rollercoaster and understanding of my condition is still in its infancy in the UK. I am not just someone with bendy joints, it creates a multi system illness. The autonomic system alone, that gets affected, controls nearly every bodily function.
My body would forget to breathe and also in my sleep my head started sliding backwards due to the lax ligaments which would leave me gagging, which was terrifying. My bladder started voiding and my leg muscles would go rigid in the night, I would wake up screaming with pain and my husband would have to try and get the legs bent and the muscles out of spasm.
I was originally misdiagnosed with just having M.E. & Fibromyalgia for many years and it wasn’t until I had an upright MRI that it became apparent that I had severe instability in my neck, plus every time i moved my head my odontoid was rubbing against my brainstem (circled below). Then we found the occluded jugular vein with another specialised scan.
I went abroad to see a surgeon that was carrying out these operations, as there was nobody I knew about that could do the operations on the NHS, he wanted to fuse me from my skull to my shoulders. I then found someone in the UK privately that was able to get me in quickly and fuse my neck before any more damage was done, plus he gave me a smaller fusion.
Although these operations have all now been done, I have to wait 3 months to see if the collapsed blood vessels up inside the brain will naturally open now the occlusion has been removed.
See CT Venogram below showing collapsed vessels on the left side of my brain due to the jugular vein being occluded for so long. They should be as thick as the vessel on the right side and we are hoping they will now open up naturally. Failing that, I might need the vessels opening with a ballon venoplasy or stents. These collapsed veins in my brain are causing the majority of my remaining neurological and visual issues.
This will be all investigated further when I go for my 3 month post operative review & this is when I will need another 'specialised' scan, as discussed above.
What I have been through has been terrifying, I wouldn't wish this on anyone. Its a complex condition but we have finally worked out what has been wrong for all of these years. I am recovering from the last two operations and in bed resting up at the moment. I am looking forward to a brighter future and getting my old life back. The next steps are to start Intensive Rehabilitation & Physiotherapy.
I am swallowing my pride and asking for any help that I can get at this point, which is hard when you are used to being independent, and thank you so much for your kindness in advance.
If you want to follow the Fundraising Journey please Join & Like my Facebook Page:
#CareForCarley Facebook Page
Links to my medical condition:
Neurological and Spinal Manifestations of Ehlers Danlos Syndrome
Cervical Medullary Syndrome secondary to Cranio Cervical Instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders
The Autonomic Nervous System, Dysautonomia and its Relationship to Cranio- cervical Instability
In the last few weeks I had to have TWO Life Changing Neuro/Spinal Surgeries as the top two vertebrae in my neck were "severely unstable” and had dropped backward into my brainstem (Atlanto Axial Instability). Also, part of my top vertebrae was occluding one of the main veins out of my brain and this piece of bone needed removing as well. I was in sheer agony from the neck being so unstable. I started choking on food as my swallow reflex was affected, breathing was affected, the muscles in my throat were constricting like I was being strangled, and many more terrifying symptoms were happening!
I have been unable to work for 5 years, as I've been so ill, and couldn't afford these surgeries but had no choice but to proceed with them as I was declining further. I couldn't fundraise either and as my vision became so bad and the surgery was offered to me within 2 weeks.
We managed to put some money towards the operations but had to temporarily borrow the rest, as the surgeries are private and unfortunately not yet available on the NHS.
Now I am trying to recover but have the extreme stress and worry of needing to pay back what I owe.
My operation's have already given me so many positive changes but I still have a long recovery ahead of me.
As well as fundraising to pay back the money that I owe I need enough to cover future 'specialised' post operative scans and enough to be able to have Intensive Rehabilitation & Physiotherapy which is also not available on the NHS, but is crucial to aid recovery.
I have factored all of this into the fundraising amount.
I would be grateful for ANY help that I can get with this fundraiser, even if its a small amount that you can donate, and I thank you in advance from the bottom of my heart. xx
My operation's have already given me so many positive changes but I still have a long recovery ahead of me. I am still recovering from the surgeries and am in the bed the majority of the day but am thrilled with the differences so far.
I can be upright for longer now and able to mobilise more easily with improved co-ordination.
A lot of the severe symptoms I had before surgery have gone and I feel that I now have a chance to get my life back for not only my sake but for my amazing husband who's been by my side supporting me for the last 11 years. I have a 90 year old grandmother that I need to look after and a father with Alzhiemers that I would like to see more of and hopefully now I will have that chance!!
I now have a chance to get my old life back that I miss so much, a chance of being independent again, possibly be able to work and drive again in the future.
My old life .......
I need all of the help I can get and I know that there are some very caring individuals out there so here goes.....Ive actually been ill for 19 years and was left undiagnosed for 16 of those.
I suffer from The 'Hypermobile' Type of Ehlers Danlos Syndrome
Figures suggest....
1 in 5,000 people have the condition
1 in 15 of these 5,000 go on to develop Cranio Cervical Instability
Ehlers Danlos is a connective tissue disorder which not only effects collagen, it makes ligaments lax and can create defects that lead to abnormal structural changes with the skeleton. If my ligaments get damaged or overstretched they are unable to repair correctly along with many other issues.
Over the last 19 years this has wreaked havoc on my life and left me eventually housebound and very isolated.
I would have always had this condition but it was triggered after a whiplash and the neck just couldn’t repair after the injury, my ligaments in my neck became severely lax and the neck became dangerously unstable.
I became mostly bed bound for the first 3 years and unable to see properly. I had to crawl to use the toilet or try to get to the kitchen and I was left with blurred vision, incredible fatigue where any little task would leave me very ill, balance issues where I felt like I was constantly drunk or drugged and would fall all over the place, memory loss where I would forget peoples names that I had known all of my life.
I've suffered jaw subluxations, more than likely because the neck was out of alignment, that were agony where the jaw would sublux so much the cartilage would move out of place and I have needed multiple operations to fix my jaw which have also been very painful & distressing.
This started at 25 yrs old. I was so ill my life changed at this point and its just got worse ever since.To cut a long story short, the last 5 years I declined dramatically . I had previously been able to work at a push, but 5 years ago I became so ill that I wasn’t even able to do that. I have relied on my husband to support me and we have been unable to live a normal life and have any family of our own due to my condition.
Brainstem compression, along with Vagus nerve compression at the level of the C1 Vertebrae, made me develop issues with my autonomic nervous system where my blood pressure would go haywire which would lead to my blood pressure dropping where I would collapse......
Its like a rollercoaster and understanding of my condition is still in its infancy in the UK. I am not just someone with bendy joints, it creates a multi system illness. The autonomic system alone, that gets affected, controls nearly every bodily function.
My body would forget to breathe and also in my sleep my head started sliding backwards due to the lax ligaments which would leave me gagging, which was terrifying. My bladder started voiding and my leg muscles would go rigid in the night, I would wake up screaming with pain and my husband would have to try and get the legs bent and the muscles out of spasm.
I was originally misdiagnosed with just having M.E. & Fibromyalgia for many years and it wasn’t until I had an upright MRI that it became apparent that I had severe instability in my neck, plus every time i moved my head my odontoid was rubbing against my brainstem (circled below). Then we found the occluded jugular vein with another specialised scan.
I went abroad to see a surgeon that was carrying out these operations, as there was nobody I knew about that could do the operations on the NHS, he wanted to fuse me from my skull to my shoulders. I then found someone in the UK privately that was able to get me in quickly and fuse my neck before any more damage was done, plus he gave me a smaller fusion. Although these operations have all now been done, I have to wait 3 months to see if the collapsed blood vessels up inside the brain will naturally open now the occlusion has been removed.
See CT Venogram below showing collapsed vessels on the left side of my brain due to the jugular vein being occluded for so long. They should be as thick as the vessel on the right side and we are hoping they will now open up naturally. Failing that, I might need the vessels opening with a ballon venoplasy or stents. These collapsed veins in my brain are causing the majority of my remaining neurological and visual issues.
This will be all investigated further when I go for my 3 month post operative review & this is when I will need another 'specialised' scan, as discussed above.
What I have been through has been terrifying, I wouldn't wish this on anyone. Its a complex condition but we have finally worked out what has been wrong for all of these years. I am recovering from the last two operations and in bed resting up at the moment. I am looking forward to a brighter future and getting my old life back. The next steps are to start Intensive Rehabilitation & Physiotherapy.
I am swallowing my pride and asking for any help that I can get at this point, which is hard when you are used to being independent, and thank you so much for your kindness in advance.
If you want to follow the Fundraising Journey please Join & Like my Facebook Page:
#CareForCarley Facebook Page
Links to my medical condition:
Neurological and Spinal Manifestations of Ehlers Danlos Syndrome
Cervical Medullary Syndrome secondary to Cranio Cervical Instability and ventral brainstem compression in hereditary hypermobility connective tissue disorders
The Autonomic Nervous System, Dysautonomia and its Relationship to Cranio- cervical Instability
Organizer
Carley Savage
Organizer
England
