Hi, my name is Splodge52! — Scope | Disability forum

Hi, my name is Splodge52!

Splodge52
Splodge52 Member Posts: 6 Listener
Hi guys .
Im Donna and I have had Chari Malformation for 12 years.

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Splodge52 - & welcome to the community. Myself & family are affected by Chiari 1 Malformation associated with Ehlers-Danlos Syndrome. One of the best (or probably the best) places for information on Chiari 1 Malformation is the American Syringomyelia & Chiari Alliance Project's website. Please see: https://asap.org/
    They also have videos of past year's conferences. Here's the one from 2020 which I 'virtually' attended: https://asap.org/conferences/virtual-conference/2020-conference-videos/
    Previous year's conferences here: https://asap.org/conferences/past-conference/
    These are all for patients, & I have found them so informative.
    So how are you? :)
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,254 Pioneering
    Splodge52 said:
    Hi guys .
    Im Donna and I have had Chari Malformation for 12 years.

    Hey @Splodge52 :)   

    Welcome to the online community, it's great to have you here with us! Thank you for sharing a little bit about yourself - I'm not too familiar with Chari Malformation, so if you feel comfortable to do so, it would be great for you to share a little bit about the condition :) 

    If you're looking to make new friends and play some fun festive themed games, the coffee lounge is always a good place to start with the community. Our members are very friendly and will make you feel welcomed :) 

    If you have any other questions or queries, please just let us know and we will be happy to help.

    Libby
    Online Community Information Coordinator
    Scope

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  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Libby_Scope - Chiari 1 Malformation is a disorder in which the normally developed brain is compressed by the lack of space at the back of the skull often resulting in a downward displacement of the lower portion of the cerebellum, i.e. herniation of the cerebellar tonsils into the spinal canal.
    In Ehlers-Danlos Syndrome, particularly the hypermobile type, hypermobility at the joints at the base of the skull can result in the lower part of the brain slumping down, resulting also in the descent of the cerebellar tonsils.
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,254 Pioneering
    chiarieds said:
    Hi @Libby_Scope - Chiari 1 Malformation is a disorder in which the normally developed brain is compressed by the lack of space at the back of the skull often resulting in a downward displacement of the lower portion of the cerebellum, i.e. herniation of the cerebellar tonsils into the spinal canal.
    In Ehlers-Danlos Syndrome, particularly the hypermobile type, hypermobility at the joints at the base of the skull can result in the lower part of the brain slumping down, resulting also in the descent of the cerebellar tonsils.
    Ah that's great, thank you for the information @chiarieds :)  

    That's interesting about Ehlers-Danlos Syndrome as I'm currently being investigated for it too because I have PoTs and potentially MCAS and I think they are sometimes interlinked with one another. 
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    Scope

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  • Splodge52
    Splodge52 Member Posts: 6 Listener
    Thank you for the welcome.
    I would happy to share information about my condition as I also had a syrinx with my chairi and I now suffer from extreme nerve pain 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Libby_Scope - We haven't pursued a diagnosis of PoTS, but both my son & I definitely have orthostatic hypotension. I've also wondered about MCAS in myself. If you haven't seen it, this video may be of interest. Dr Maitland is great, altho she tends to speak rather fast! Please see:
    You will see there are other videos by her there, which are well worth watching. She presents for the American Syringomyelia & Chiari Alliance Project's conferences too. See reference above.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Splodge52 - that's my problem (tho I don't have a syrinx/syringomyelia), the neuropathic pain. Have you had any surgery?
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,254 Pioneering
    chiarieds said:
    Hi @Libby_Scope - We haven't pursued a diagnosis of PoTS, but both my son & I definitely have orthostatic hypotension. I've also wondered about MCAS in myself. If you haven't seen it, this video may be of interest. Dr Maitland is great, altho she tends to speak rather fast! Please see:
    You will see there are other videos by her there, which are well worth watching. She presents for the American Syringomyelia & Chiari Alliance Project's conferences too. See reference above.
    That's great and really helpful, thank you :). I see a fantastic PoTs specialist and he suggested that I also get tested for MCAS as I'm having a lot of histamine type symptoms too, so I'll definitely take a look at the video. I understand why you might not have pursued a PoTs diagnosis, as it's timely and tilt table tests seem to be quite rare in the UK! 
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  • Splodge52
    Splodge52 Member Posts: 6 Listener
    Yes I had foreman Magnum decompression and duraplasty in January 2012. I also had further surgery in November 2012 due to having a leak around the patch which was leaking CSF into the back of my neck but this was still communicating with my brain, so it made me feel very sick whenever i moved my head.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    I'm sorry for what you've experienced @Splodge52 - there have been so many advances in the understanding of Chiari 1 Malformation in the past 20 years, & resulting modifications in surgery. With having Ehlers-Danlos Syndrome (EDS), different techniques have evolved when this complicates matters (Complex Chiari). A New York neurosurgeon I know has developed a 'minimally invasive technique' which would potentially benefit not only those with EDS. If you look at the videos of past conferences I mention above you will see some of Dr. Bolognese's.
    How are you now? I do hope things have improved for you.
  • Splodge52
    Splodge52 Member Posts: 6 Listener
    I was good for a few years and even returned to work. But about 4 years ago I started suffering from Peripheral Neuropathy and is affecting my daily life, the brain fog has returned and so has some of the numbness in both my arms and legs .... I feel like I am a walking chemist and if your were to shake me I would probably rattle ..
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    I'm sorry to read that @Splodge52 - absolutely awful that you now also have Peripheral Neuropathy on top of everything else. You mention that both of your neurological problems are affecting your daily life. I hope you don't mind me asking, but have you considered looking into the Personal Independence Payment (PIP), as this is a benefit to help when certain activities of daily life &/ mobility are affected? Some info here: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf
  • Splodge52
    Splodge52 Member Posts: 6 Listener
    thank you @chiarieds, believe it not my partner has just helped me complete the PIP form, so now it is just a case of wait and see. x
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    That's good @Splodge52 - may I ask & have you sent your PIP form off?
  • Splodge52
    Splodge52 Member Posts: 6 Listener
    edited December 2021
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hoping all goes well @Splodge52 - it does now, due to the pandemic & subsequent backlogs, take on average 10 months from claiming to getting a decision letter (after you get an assessment).
    If you haven't given a couple of detailed examples as to the difficulty you face doing/ attempting to do any applicable activity then it may be worth sending these off now (putting your name & National Insurance number on each page & linking your letter to your claim pack) as it will likely be months before you're assessed. Worth getting it right now!
    These detailed, fairly recent examples should say, when did it happen, where, what exactly happened & why, did anyone see this, & were there any consequences to attempting/doing an activity?

    Say if you can't do an activity 'reliably,' i.e. safely, to an acceptable standard, repeat as often as one would reasonably expect, or if it takes you much longer than someone without a disability. See this mentioned at the end of the link I gave above about PIP.

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