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Is chairi malformation a disability? What are my rights in employment?

Skyeboss

Hi,

I have just been diagnosed with chairi malformation type 1, which has left me unable to work. What I was hoping someone might be able to answer, is it considered to be a disability. I believe in the USA it is and is treated more rapidly that what I'm finding with the NHS. Because there is no cure, I don't know what that means long term? My current employers although supportive are getting to the stage where they may have to cancel my contract. Because of ill health, as I have been of work several times this year, plus have had other health problems in the past. I don't know what my rights are in this respect. Can they just sack me. I understand I would have more rights if I had a condition which is classed as a disability. Plus atleast I would have something to fall back on if it meant I couldn't work again in the future, which is looking increasingly more likely.

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Skyeboss

Thanks mikehughescq for responding. I was diagnosed with chairi malformation type 1 around febuary of this year, after mri. At present I'm in constant pain, which at times is severe. This pain is in my neck primarily, as well as my shoulders. Especially my right (I'm right handed), at present I'm not sure what triggers it to become worse?
I also suffer from extremely painful tension headaches. As well as constant pins and needles in my left hand, and I also have no feeling in left arm. The thing that's puzzling the doctors at the moment, is that I occasional have numbness in my face. This again is on the left side.
Because of my condition I have had 2 extended leaves from work in the space of the last year. August 17 to nearly August of this year.
The symptoms have devloped very quickly in this time though. To start with I only had the pins and needles in my hand. This spread to my arm and so on.
In terms of it stopping me from doing anything. I obviously cannot work, first and foremost. When the pain is at its worst, it is debilitating. I can do very little at these times. Also pain killers have very little effect. I'm currently on tramadol, which I take 2 tablets 4 times a day. However I'll be quick to add it doesn't stop me from dressing etc...
Because of the nature of the condition however, I will have it until the day I die. There is no cure, and if I have reached the worst of it yet it's enough to stop me working. It's also extremely rare. The Americans believe about 1 in 200-300 people have it. Although I'm not sure if this backed up by over research. Although the NHS ask if they can record your medical notes for the rare conditions and diseases people. The only thing that can be done is to relive the symptoms is to have decompression surgery. Thankfully I go an see a surgeon in Southampton on Thursday. It is however down to the Surgeon if they do surgery or not. Due to risks involved it's a balance between will it give me enough of a difference. If it were up to me however, I would have the surgery given how bad I feel at the moment. Even with the risk of spinal/brain surgery. Given the chance I will express how I feel.
Thank you again for your help. Hopefully you may be able to gauge where I am from your message.
Skyeboss

Middleton

Skyeboss said:

Thanks mikehughescq for responding. I was diagnosed with chairi malformation type 1 around febuary of this year, after mri. At present I'm in constant pain, which at times is severe. This pain is in my neck primarily, as well as my shoulders. Especially my right (I'm right handed), at present I'm not sure what triggers it to become worse?
I also suffer from extremely painful tension headaches. As well as constant pins and needles in my left hand, and I also have no feeling in left arm. The thing that's puzzling the doctors at the moment, is that I occasional have numbness in my face. This again is on the left side.
Because of my condition I have had 2 extended leaves from work in the space of the last year. August 17 to nearly August of this year.
The symptoms have devloped very quickly in this time though. To start with I only had the pins and needles in my hand. This spread to my arm and so on.
In terms of it stopping me from doing anything. I obviously cannot work, first and foremost. When the pain is at its worst, it is debilitating. I can do very little at these times. Also pain killers have very little effect. I'm currently on tramadol, which I take 2 tablets 4 times a day. However I'll be quick to add it doesn't stop me from dressing etc...
Because of the nature of the condition however, I will have it until the day I die. There is no cure, and if I have reached the worst of it yet it's enough to stop me working. It's also extremely rare. The Americans believe about 1 in 200-300 people have it. Although I'm not sure if this backed up by over research. Although the NHS ask if they can record your medical notes for the rare conditions and diseases people. The only thing that can be done is to relive the symptoms is to have decompression surgery. Thankfully I go an see a surgeon in Southampton on Thursday. It is however down to the Surgeon if they do surgery or not. Due to risks involved it's a balance between will it give me enough of a difference. If it were up to me however, I would have the surgery given how bad I feel at the moment. Even with the risk of spinal/brain surgery. Given the chance I will express how I feel.
Thank you again for your help. Hopefully you may be able to gauge where I am from your message.
Skyeboss

Hi If you dont mind me asking. How low are the cerebellum tonsils? mine are approx 3-5mm and the Neurologists have never picked up on my 20+MRI's.

Its something ive noticed over the aforementioned MRI's(mri' were primarily for my c5-c7 spinal stenosis) but i began to research what else could be causing me to constantly feel pain and fatigue .

Your symptoms are practically exactly like mine. The neck pain is horrific.

Im in process of having Neurologist at St Thomas' London look into Chairi, along with the trigeminal issues occipital and SUNCT issues i presently have.

Maybe 3-5mm C Tonsils isnts an issue (mine) so just wondering if yours are very low and any syrinx?