Pain the back - spinal stenosis — Scope | Disability forum
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Pain the back - spinal stenosis

SueHeath
SueHeath Community member Posts: 12,420 Disability Gamechanger
edited January 2022 in Rare, invisible, and undiagnosed conditions
Hi all new to this type of thing, so I hope I,m doing this right ha ha.
Anyone on here that suffers with spinal stenosis i've just been diagnosed. x
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Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 49,767 Disability Gamechanger
    Hi @SueHeath welcome to the forum. There are lots of people on here who suffer with their backs.  How you coping with your new diagnoses.
    Join in with the topics on the forum.
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    edited January 2022
    Hi @SueHeath there have been a few relatively recent discussions on spinal stenosis, here, here and here. I believe there's also a spinal stenosis group chat that was recently added to, which was started in 2019.

    I've moved your post into our Rare Conditions category so that it's easier for our members to find :)

    If you need to search for particular topics, you can use the search bar by clicking the magnifying glass- it's by the notification bell on a desktop screen, or by your profile picture on a phone.
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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    I too have Moderate Spinal Stenosis as well as Congenital Hydrocephalus and Chiari Malformation , I have had many surgeries from after my prem birth in the 60's to more recent years but after a recent visit to see the Neurosurgeon he won't do surgery on my back as it's too risky , what he did say was that I have a reduced amount of CSF in my lower spine so that obviously doesn't help with the pain that I get . on the whole I do very well apart from when pain hits that pulls me down , I also get very tired especially in my legs and they swell up more so in the feet and ankles , would be nice to hear from others like me .

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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    Hi @CHIARIHEAD03 thanks for joining the discussion and sharing your thoughts :) It's great to have you here.
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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    Thank you very much for your comment , it's appreciated  :)
     
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  • chiarieds
    chiarieds Community member Posts: 16,097 Disability Gamechanger
    Hi @SueHeath - & welcome to the community. I hope you find the links above helpful, & also use the 'search' function, as we certainly have a lot of members that suffer with this.
    Welcome too @CHIARIHEAD03 - my family is also affected by Chiari Malformation; in our case it's Chiari 1 Malformation associated with the hypermobile type of Ehlers-Danlos Syndrome. So, I'm a little like you! I'm in pain the moment I'm upright, & pain for whatever reason is not much fun. It's very nice to 'meet' you both. :)
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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    Lovely to hear from you , im sorry to hear that your family is effected by Chiari and other conditions associated with it , certainly isn't funny and I feel for you and what you have to deal with every day , I am the only one in my family with a complex brain condition but then I know nothing else and have just got on with it even though it has meant many sugeries ,  being bullied and judged because im not in full time work and also as im having to now act as an unpaid carer for my mother because my sisters wont pull their weight and do more to help me and what I have to deal with every day , they haven't a clue what us with chronic health issues have to deal with . Take Care of yourself .
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  • chiarieds
    chiarieds Community member Posts: 16,097 Disability Gamechanger
    Hi @CHIARIHEAD03 - like yourself, we know nothing else, as Ehlers-Danlos Syndrome (EDS) is a genetic disorder associated in a few of those with EDS with Chiari 1 Malformation (& this association can be genetic).
    I'm really sorry to read what you've gone through, & your situation now isn't helped as far as your sisters go. On a practical note, & depending on you & your Mum's situation as far as any benefits go, have you checked to see what help may be available? This is a useful website, where you'll see there's a benefits checker: https://www.turn2us.org.uk/
    Thank you, & you take care too. Please come back with any questions, & I look forward to seeing you around the forum. :)
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Thank you all
    I'm hoping i can learn how to navigate around this forum ha ha, i'm sill learning computor skills and i do not have one of those posh phones ha ha, so please bear with me if i dont answer back straight away.x

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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    Thank you for getting back to me I have got benefits in place for me but that is only Carers Credit and PIP standard rate only , my mother has carers going in to see her as she has Dementia and Macular degeneration is 95yrs in May  but she hates them and so refuses their help , I can't get other benefits as my mother doesn't have benefits herself only old age pension , she is far too proud  my sisters who don't live close by are hopeless they think they are doing much to help but I seem to be doing the lions share as I always have since I was a child . I am trying to get back into some flexible work again but I don't know what to do for the best im dammed if I do and dammed if I don't .
     
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    CHIARIHEAD03 said:
    I too have Moderate Spinal Stenosis as well as Congenital Hydrocephalus and Chiari Malformation , I have had many surgeries from after my prem birth in the 60's to more recent years but after a recent visit to see the Neurosurgeon he won't do surgery on my back as it's too risky , what he did say was that I have a reduced amount of CSF in my lower spine so that obviously doesn't help with the pain that I get . on the whole I do very well apart from when pain hits that pulls me down , I also get very tired especially in my legs and they swell up more so in the feet and ankles , would be nice to hear from others like me .


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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    hi ya sounds like you've been through the mill - i usually just except things and get on with it but this has really brought me down - as soon as the consultant said opp i've gone into panic mode - i've always refused this kind of intervention but he told me its only going to get worse and they'd rather do it now then later - have you ever had fusion. xxx
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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    Sounds like you are a very positive person Sue despite all you are dealing with that's a lot , like I am but I know what you mean and know how you feel with your situation , it's not funny and there are some difficult choices to make thank goodness you are being seen by a Neurosurgeon I hope they are good and take good care of you  . I have had many surgeries but after a recent visit to see my surgeon he will not touch my spine unless things get much worse , it's too risky ive not enough csf going though my lower back and it was thought I might have another decompression surgery Iike I had in the back of my head in 2003 , that was in a right royal mess not seen by surgeons in Bristol before so my case is rare . I have heard of Spinal fusion yes , not nice . I do hope you feel better soon and they can help you I know what chronic   pain feels like.  Take it easy and take care  
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Thanks for the response CHIARIHEAD03 i'm just dont know what to do at the moment i'm 64 and if i leave it the consultant it can be a worse process when i'm older x

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  • CHIARIHEAD03
    CHIARIHEAD03 Community member Posts: 14 Connected
    I know what you mean it's scarey , im 54yrs so obviously younger than you but ive still got a complex brain condition with the stenosis on top and as we get older it  just gets worse , as like they said to me it's more difficult to treat the older you get that's why there is only so much they will do for me  , so far ive only been treated when my symptoms were life thetening the fact I was born prem with my conditions doesn't make it any easier it has just toughened me to cope with whatever I have to deal with .  You need to think what is right for you as nobody else can decide for you , they can advise all I can say is that it is major surgery and there are risks involved but then the surgeons should discuss that with you anyway . Take care of yourself Sue   
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