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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Hi @loopylou22 - the only comorbidity I have is orthostatic/postural hypotension, but I'm wondering about Mast cell activation disorder as I suffer with allergies (both more to do with EDS, tho my worst problem is neuropathic pain the moment I'm upright).
    Do you know when you're going to have surgery? Please keep in touch & let us all know how you get on.
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  • loopylou22
    loopylou22 Community member Posts: 12 Listener
    Hi @chiarieds

    That's interesting, my Neurosurgeon wants me to be checked for MCAS too. I'm not sure how we go about getting a diagnosis though ?

    Neuropathic pain is horrendous so I really feel for you. 

    I've no idea at the moment, there isn't a single neurosurgeon in the UK that is qualified to perform the surgery so I'm having to go to Barcelona, which means I'll have to pay for it. We're still trying to decide what to do to raise the money. I think it's becoming more of an emergency as my eyesight has already been damaged by the intracranial hypertension and now my oxygen levels keep dropping really low, I think it's due to the compression on my brainstem ?

    My friends and family want me to go to hospital but my local a&e never know what to do with me so they end up making so much worse for nothing. Xxx
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  • chiarieds
    chiarieds Community member Posts: 16,098 Disability Gamechanger
    Hi @loopylou22 - I did wonder where you might have surgery. I've given up seeing 'specialists' in this country as I was educating them. I have heard people mention Barcelona, tho I would probably head to New York. I've been in touch with a neurosurgeon there (since 2000) who has developed a minimally invasive technique, which would certainly benefit those of us with EDS. You can see Dr. B's presentation on this here: https://www.chiarinsc.com/video-asapconferences.php    if you scroll down to 'Minimally Invasive Techniques in CM1 Surgery.'
    Dr. B also lectured on 'Craniocervical instability' in last years virtual American Syringomyelia & Chiari Alliance Project conference (which I attended). See: https://asap.org/conferences/virtual-conference/2020-conference-videos/
    He was the first Dr to notice some of his Chiari patients also had EDS, & helped me raise awareness of this association of CM1 and EDS here in the UK.
    I had wondered if the Walton Centre might be OK as they have clinics for Complex Chiari (we fit into this category), & Mr. B (2nd named neurosurgeon) mentioned in the following link might be worth seeing. Please see: https://www.thewaltoncentre.nhs.uk/80/chiari-malformation-and-syringomyelia.html
    There's a lecture on Mast Cell Dysfunction in the 2020 conference too (a few below Dr. B's) which you may like to watch.
    Do you have any info on Barcelona Drs? I would be really interested to hear.
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  • loopylou22
    loopylou22 Community member Posts: 12 Listener
    Hi @chiarieds

    Thank you so much for all of the links. ? I have heard of Dr Bolognese and I was considering having a consultation with him. 

    I've already seen a neurosurgeon at the Walton Centre, they said I may need spinal fusion and sent me on my way. They gave me a name of a Dr to be referred to but after researching, I found that Dr Gilete in Barcelona was the closest person that could help me. 

    https://drgilete.com/cci-eds/

    I'm still learning about my conditions so I'm interested to check out the links you've included in your comment. Thanks again ?



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