Feel I got no choice — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Feel I got no choice

bobby1221
bobby1221 Member Posts: 11 Listener
I have had mental health issue for some time but in the last fee years my back went. For the most part I been left alone put in support group. But recently that has change and put in wrag I couldn't appeal as I don't really like stuff like that let alone a medical does my head. I jus couldn't do it. But now I feel I been back into a corner and now considering an operation that I have repeatedly refused in the past on my back. I suffer from compulsive traits so I don't do things half measure. I feel pished into a corner and the only way to solve a corner is to do something that I didn't want to do in the first place. I was content with jus pottering around my house. Society hmmm. Not sure I am exactly keen on society. In the past I have tried unsuccessfully to work tried there schemes but all have failed. Don't know wat to do but do something to appease everyone despite not really wanting it

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Thanks for sharing this with us @bobby1221, how are you doing? 
  • bobby1221
    bobby1221 Member Posts: 11 Listener
    Well ok as can be expected. The operation like all operations has risks my odds are 70% chance of success the rest a Gray area and 10% not do anything at all. For the last few years I was left alone but they saying that I can walk well not well at all. I could of appealed but that would of just finish me off. With medicals I think it would be easier if I wasn't here let alone a appeal. But for me to do what they ask of me I decided to have the operation. All this has put me back ten steps. The
     Surgeon is a nice matey so I suppose that's helps a bit. I have said if there's not much that can be done leave it and stitch me up. 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    I wonder if it's worth arranging to see your GP and talking through how you're feeling with them, @bobby1221? If you're going to have the operation, it should be because it's in your best interests, as I'm sure you know!
  • mossycow
    mossycow Member Posts: 488 Pioneering
    Hey @bobby1221,

    Tough times..  Corners are utter **** (wanted to use many more swear words there...) 

    Yeah  the operation thing.... I'm similar. Do you fear it will be worse? Do you worry about the risks? 

    Do you feel you can work? If not.... Tackle that. Get some help to change the ESA stuff. These Scope dudes are really good  I had help from the helpline and changing ESA groups and appealing is getting easier... 

    Do you claim everything you're entitled to? I know it's such a drag but do you get pip? Hpusing/council tax stuff etc? 

    It all seems like loads.... I got so stressed with it... And I called the helpline about... 2 years ago and just poured out everything and they helped me sort it out. 

    Youre in a corner but you're not completely alone. It's so hard but there's still stuff that can be done. 

    How are you today matey? 
  • Waylay
    Waylay Member Posts: 963 Pioneering
    @bobby1221 Please don't get the operation just because of the DWP. I had spinal surgery (lateral microdiscectomy) for a slipped disc 10 years ago, and had one of the worst possible outcomes.  I've beenbin chronic pain  eefor a decade, with agonizing back spasms, sciatica, numb foot, neuropathic pain in back, a permanent spasm, and paralyzed spinal muscles. I've worked (part-time) 2 years out of the past 10, and it didn't go very well. I'm also somewhat incontinent. 

    I'm not saying that it'll be like this for you, but it *could* be (I'm in the worst 1-2% for outcomes). But this kind of thing does happen, and there are a lot of outcomes which aren't as bad as mine, but are still worse than people go in. 

    If you speak to your GP, do some research on your condition and the operation, get a 2nd opinion, and check the success rate of your surgeon, and it all looks good, then it seems like a good plan. But do these things first. I'm not saying that neurosurgeons lie to patients, but when you're a surgeon, surgery is the obvious way to fix things, you know?

    Also look into appealing. This is a big decision. If you do it it'll go well, but if it doesn't... 
  • Waylay
    Waylay Member Posts: 963 Pioneering
    @bobby1221

    I hear you. Back issues and mental health problems as well. Do me a favour, though, and get some advice before making a decision? Your GP, therapist, social worker, family member, best friend, etc. This is a big decision to make.

    I'm not sure if I'm reading your post right, but it sounds like your mental health problems were keeping you from working before your back went. Is that right? If that's the case, were you getting ESA support group just because of your MH probs before your back went?

    It sounds like you don't really want to have the operation. Can I ask why?

    Most (all?) spinal surgeries don't fix your back 100%. Surgery may well improve it, sometimes a lot, but it's unlikely to make your back the way it was before you hurt it. Even if the surgery magically fixed your back 100%, would you be able to work afterwards? Is your mental health good enough, or would it improve enough after the surgery, for you to get a job? 

    I'm concerned that you might have an operation you don't want to have and still not be able to work. That wouldn't help your chances of getting ESA, either. 

    You say that there's a 70% chance you'd improve with this op, and 10% it wouldn't change anything That means there's a 20% chance it could get worse. Are you comfortable with that? It could potentially get a little worse, a fair amount worse, or  much, much, worse. Did you get those percentages from the surgeon? Be aware that they may not be correct. I'm not saying that the surgeon is lying, but they may not be aware of how all their patients ended up doing. I saw my surgeon a week after my op and a month after. 6 weeks after is when I developed a problem, and I doubt she ever found out. 

    I ruptured my L5/S1 disc 10 years ago. Nothing helped after 2.5 months, and I was in agony and couldn't stand. A neurosurgeon recommended an operation and told me the chances were 80% better, 10% no effect, 10% worse. 

    I went for it. 6 weeks afterward, I developed severe chronic pain, including agonizing back spasms, sciatica, numb foot, neuropathic pain in back, a permanent spasm, and paralyzed spinal muscles. I've also got some incontinence, and suffer from mobility problems. I've  worked (part-time) 2 years out of the past 10, and it didn't go very well. Despite having every treatment possible, it only got 1/3 better. My MH went down the tube as a result. I'm now severely disabled, and in moderate-severe pain all the time.

    About a year after my surgery, I looked up how likely my outcome is: 1-2%, so I was really, really unlucky. But it has to happen to somebody, right? I also found out that for that particular surgery, there's actually a 33% chance of improvement, 33% chance of no change, and 33% chance it'll get worse. Again, I'm sure my surgeon wasn't lying - this paper I found (and some others) was a big meta-analysis of 10's of thousands of these surgeries. My surgeon probably wasn't aware of it. (This was 10 years ago, so things might have changed now).

    I'm not saying that it'll be like this for you, but this kind of thing does happen, and there are a lot of outcomes which aren't as bad as mine, but are still worse than neutral. 

    If you speak to your GP, do some research on your condition and the operation, get a 2nd opinion, and check the success rate of your surgeon, then you'll get a better idea of the risks. I'd also look into other treatments. Again, I'm not saying that neurosurgeons lie to patients, but when you're a surgeon, surgery is the obvious way to fix things, you know? There might be other things (physiotherapy, osteopathy, hydrotherapy, injections, stretching, meds, pain management, etc.) that might do enough that you don't need the op. 

    Tbc
  • bobby1221
    bobby1221 Member Posts: 11 Listener
    Hi all thanks on the replys. Yes I was off ill for mental health not the back but they aware of my back. Etc. I can walk to a degree but not brilliant. I am on opioid meds patches and tablets for pain. For the most part I am a recluse but that sits well with my mental health issues. I was never really socially brilliant. So in some ways was content as I didn't have to do anything to social. I was left to my own accord that way. Been to pain clinic but they as much use as a chocolate fire guard (when you are paranoid it dosnt go well) 
    Yes the surgeon gave me those odds. I have had this back issue for some years now as was adament I wasn't keen on op. But I do feel kinda in two frames of mind of it all get my life back (to what extent that would be) I don't know if my back was good would I be able to work couldn't possibly know exactly. As it's take centre fold. I get para depressed anxious etc. Suicidal even. But hard one to explain in all detail. So I was reclusive to society before. I love to work to be "normal". As for the operation I am gonna speak to my doc about it and how I feeling and dss is making me feel.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    How the surgery goes depends on how good the surgeon is, how good the facilities are and how good the support system within the hospital works afterwards. I had a fusion of the L5-L6 disc done years ago and, apart from a few headaches from a pressure point, improved dramatically. Now I have a rupture at L4-L5 and multiple collapses in the Lumbar and Thoracic areas of the spine and just wish some surgery existed to correct the problems. Before anyone asks... no, I get no back pain, my pain is in the legs, hips, neck, shoulders and arms. People are so apt to confuse spinal problems with back problems. Sciatica, for example, is a spinal problem not a back problem and the pain is usually in the legs and hips, only occasionally in the back. Most back problems are muscular in nature and not as painful as spinal problems.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Waylay
    Waylay Member Posts: 963 Pioneering
    Good luck @bobby1221 . Pain and isolation can make your MH problems worse, which can make your pain worse. It can turn into a self-perpetuating situation. I hope you find the solution that's right for you.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    All the best to you @bobby1221, speaking to your doctor about how you're feeling definitely sounds like the right thing to do. Do let us know how you get on, and if we can be of any assistance. 

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.

Online employment support

Support to Work is an online and telephone support programme for disabled people who are looking for work.