Stenosis — Scope | Disability forum

Stenosis

Marble
Marble Member Posts: 20 Connected
I've been very I'll had very poor treatment from the NHS. Its been a fight from the start to get treated my hospital failed several guidelines. However, l opted to go to other hospitals but feel total exhausted with it all. 
18 mths ago l could stand up. They had reported on my MRI scans there was degeneration of the spine. 
After being messed around again l was referred to the pain clinic. I was having issues with pain walking my right arm and hand swollen and my thumb. 
As I've got osteoarthritis in every joint l was referred to the pain clinic! Where l was told we look at you as a whole you have many issues, we can look at further xrays, medication etc. 
Because I'd waited so long l had an xrays and treatment with a chiropractor. 
l was assessed by this guy who l later proved he was wrong. He said l had fybromaliga and that was it. I was referred to a chap. Who honestly read and gave me a leftlet outlining all they could do. I constantly complained about my neck, headaches problems with weakness in my arm and hand, swelling of the hand you can see. 
l asked about my medication being looked at. And help with adult social services as they advised me to go through them. I asked and waited felt embarrassed as l kept asking. 
Showed my xrays told they dont read them. lm the end my friend a consultant took them onto work to show her colleagues and they said l needed an urgent MRI as my neck looked very bad. 
My doctor had to refer me for an MRI. The results was my neck is very bad with severa spondylitis and I've got stenosis. 
Due to me bring closterphobic l had to wait for my lumber spine to be looked at. 
I was fairly disgusted that the xrays showed l had curvature of the spine although mild. Which was shown in tbe xrays from the chiropractor. 
lts like I've been fobbed off l did wonder why l was going.. handed sheets of exercises half l couldnt do. 
I became very disillusioned with my so called physio. He seemed not to know anything and would only address fybromaliga. Then covid hit and l had a video call with him. He couldnt get the sound on and although l was saying to him l cant hear you he just stared at me not gesturing anything or actually responding to my sign language or verbal, he could hear me. ld requested to see a psychologist as l was diagnosed with PSTD. 
When ever l asked him he said you will be discussed at a meeting. I was making no progress after 3 mths. 
I had heated words with this physio I'd lost faith in the fact nothing was being done. 
l rang up and complained. 
l said to the women l spoke to after 3 mths and asking l got no straight forward reply l got not further with anything. 
Turns out they couldnt change my medication I'd have to speak to my DOCTOR!! 😡 l could have done that before. Turns out and l have it from there manager that "They ignore ppl that complain about pain, as it's often just in their head" l got him to repeat it twice! l said but in my case it wasnt!! 
The physio I had l had to bite my tongue when l asked to be referred to adult services for help in tbe house My bed/stairs etc. He said oh I'm not happy for that to happen. l did then say well it's up to them to assess me in my home.. He then sat on the form for a further two weeks before submitting it.. Having to go over the same details we covered two weeks previously. 
l was then referred to someone else. I'd been referred to a neurosurgeon in tbe mean time who arranged a lumber spine MRI
She spoke about meds and said she would write to my doctor. She then sent me some exercises sheets and has recently said well thanks but we can end your sessions. Clearly because l complained. Actually the exercises arent that great. 
I've had my results from the MRI I've got degenration/spondylitis in my lumber back. 
lm constantly in pain. So he has referred me back to my doctors in the mean time and if things changed. 
I was referred about my bladder thinking it could be a cause. lve mentioned my shoulder pain weakness in arm and hand he has seen tbe swollen hand. 
lm just exhausted with it all tbh. 
I suffer with depression but this whole matter has made me feel even worse. Where do l go from here? 
lf you pay to see a physio it's far better treatment I'd really like to know where this is. 
My treatment from my trust has been very poor all the way through from them missing septis to a whole in my bladder l had to beg for a scan and l was right to a fisular which was left for two years. They were going to remove part of my bowel, thank god they didnt!! 
lm exhausted.. 
Sorry for the very long post x 
Could anyone give me any advice, thank you x 
It doesnt help l live alone and have no family 

Comments

  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @Marble

    Good Afternoon it’s great to meet you today 😃

    Sorry to hear about your ongoing problems.

    Yes I can mirror everything that you have experienced so far.

    Please please let me know if there’s anything that help/support you with???

    @steve51
  • janer1967
    janer1967 Member Posts: 12,730 Disability Gamechanger
    Hi @Marble Welcome to the community, I am sorry to hear about all your pain and trouble with the NHS. 

    I dont really have a solution for you as it all seems very complex.

    Can you take it higher within the complaints system however I think the focus is on getting a correct diagnosis along with correct treatment. 

    Have you considered getting a private consultation I know this can b expensive and not a route everyone can take 

    I hope other members have more advice for you
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Awesomelorenzo
    Awesomelorenzo Member Posts: 114 Connected
    Some of you people have such bad problems. I guess I'm just lucky where I live. Although I want to see a doctor and all I get is,
    "We're not doing appointments at the moment, I can get someone to phone you," Imagine it in a whiny voice.
    Well, yes, okay. But she can't see my hand over a phone, can she?
    I feel really bad for you.
  • Marble
    Marble Member Posts: 20 Connected
    Hi thanks for your messages. Honestly l get frustrated l want the report of my MRI I'm going to see an osteopath for some private treatment, NHS physios are appalling and do nothing. I think even complaining is a waste of time. The NHS is toxic in places and isnt hun for the health of ppl. l think its about time changes are made to the NHS their is more accountability and its run better. l felt so frustrated just hitting a brick wall all the time. My doctor is polish and fab. She knows the length lve been going through dealing with all my challenges and dealing with a toxic trust. lm not the only patient l might add. She is going to get the radiologist report. It's odd because lm struggling to walk to far yet not blockage is recorded. lve emailed the consultant asking for more input. 
    Thanks for your reply guys. lts been ongoing with this trust I've asked to be referred to other trusts.
    l will have to go private again.  This is what l did in the beginning due to poor care! The NHS needs to be seriously overhauled it doesnt help l know too much about what goes on behind the scenes. With covid causing some debilitating things and many patients would have to rely on physio l do fear for their out come. I've found the pain clinic a joke from start to finish and has achieved nothing. l might contact my MP and l might write to the health minister. The actions or none actions of the NHS needs to be investigated. You cant have a profession which if you pay privately for actually treats patients and another which does nothing but hands out sheets of ppl for exercises which you're unable to do or arent relevant. l welcome the governments looking into the NHS. I didnt realise how poorly run and how they cant seem to cope with patients with complications and ongoing issues. This needs to stop. My 5 mths stint with the pain clinic resulted in nothing happening. All actions which happened was from my results. l find it shocking that a debt isnt treating ppl. I was given the label fyrbromalgia and then after that everything was ignored. lve met 4 patients with the same label who have other issues being ignored. I think it's very scary that a diagnostic is made without xrays and that dictates your treatment  l shall carry on fighting. l nanking a complaint to the onbudsman. The trust I'm under has hundreds of complaints against the pals debt... kinda says it all really. When the complain debt has complaints against it. And the higher body had had to step in and read them the "riot act" l was told. l think the reality is the NHS was once great but has become toxic in places and is now seen as a cash cow to milk. l know a few consultants and if only the general public knew how they are being duped and how there loved ones are at risk due to lack of care! 

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @Marble, it sounds like things have been really difficult. I'm sorry to hear this. How are you doing today?
    Scope

  • Marble
    Marble Member Posts: 20 Connected
    Hi Chloe, lve had my results back for my lower spine which has shown degeneration of my lower spine, disc bulging. My consultant said come back if things get worse. He's ignored my coldness in my right leg and my walking and my arm and wrist. My doctor is good. She has told me l need to get a good osteopath. The pain service isnt great. lm waiting on some exercises from her. Tbh the pain service is pointless. They seem to sign you off with fybromaliga then treat you ask if every pain you mention is "Just" in your mind! l had it confirmed by the manager. My hand is an issue because I'm right handed and its swollen. lve been looking on line for some exercises. lm going to see an osteopath and hopefully get some more incite and a second opinion. Rather than being left to it which is what the pain clinic wants to do. I find them appalling and my doctor said I'm not the only who has expressed how bad they are. l was given such high Hope's but in reality they dont diagnose you correctly and ignore anything you say. They dont sort your meds out! They ask you? 🤔 then you have to speak to your doctor so l waited 8 mths for that!! And l had to talk to my friend who is a consultant who took my xrays I paid for into her hospital and I was advised l needed an urgent MRI and went back to my doctor! For this to be done! l complained about this...! And was shunned and now they have tried to close me down at the pain clinic. Until the neurosurgeon said l should see the pain clinic. Honestly, I find it very hard to believe that if you pay privately you get treated but if your referred to the pain clinic you dont!! And sadly after speaking to a 3rd party company that deals with issues she says they get daily calls ppl expressing the same problems. 
    So I'm trying to save up to try and get some support and understanding. l did get the radiologist report and it told me more. I'm not a lover of the NHS tbh after I've had some very poor treatment not just over this.. 
    l feel rather flat about it all. It's like what do l do for the future it's not going to get better I can use the use if my right arm. Had no imput as to what to do. Apart from my doctor who says this is serious. So l feel exhausted with it all. Its like you cant win l just dont understand why there isnt any real support. This pain clinic I've spoken to 4 ppl and they all arent impressed. I said to the manager when he expressed "People have pain we tend to ignore this because we know it's in their head" l said well mine wasnt it was stenosis and you ignored it!! 😡 I mean I'm not a dramatic women l tend to put up more than l say.  l just feel so exhausted with it all tbh. Its poor I know I've listen to others with the same issues.. 
    Thanks for asking chloe sorry for whinning xx 
  • Tori_Scope
    Tori_Scope Posts: 6,575

    Scope community team

    Hi @Marble

    This does indeed sound like a very complex and upsetting situation to be in. I'm glad that the radiologist report gave you some more information. How have you been getting on for the past week? And there's no need to apologise at all, we're all here to try and offer you some support in this difficult time.

    Tori :)
    Online Community Coordinator, she/her

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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    You certainly are not whining @Marble! Thank you for sharing this. It sounds like you're really fighting for support and want to improve your current mobility. 

    This might not be completely relevant, but I have found some NHS hand exercises:
    I hope you're doing okay today. :) 
    Scope

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