Back op or not! — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Back op or not!

Options
Tiffy1691
Tiffy1691 Community member Posts: 27 Courageous
Hi everyone,
Hope you're all well and happy.
Ok, so I've been discharged from hospital following a decision to not have a spine operation. 
I have chronic pain caused by spinal stenosis and yesterday the consultant (not my usual one, he was helping out due to appointments being behind) brought up the idea of having an op.
Where my 'proper' consultant said that he personally would advise against an op due to limited space around my nerves and no room for error (he said it would be a 50/50 chance of success); this standin consultant said 60/40. He said the op would help my leg pain but they couldn't do anything for my back. They would remove a block of bone from my vertebrae to give the nerves more room but this wouldn't be a total fix and I would probably need more ops in the future. As for my back pain I can only manage the pain with medication.
My question is will the fact that I've been discharged from hospital have a negative effect upon my tribunal decision? I haven't been given a date yet but this whole situation is worry.

Comments

  • Thomaslambe
    Thomaslambe Community member Posts: 7 Listener
    Options
    Hi. A few years ago I refused the back operation after speaking to people who had already done it. They all reported that their back pain was worse and one lady ended up in a wheel chair. That scared me! They have since refused me the op. Since then I have heard only good things. It never affected my dla or PIP but I guess each case may be tested on its own merits. Wishing you well
  • BenefitsTrainingCo
    BenefitsTrainingCo Community member Posts: 2,621 Pioneering
    Options
    Hi Tiffy1691,

    A tribunal can only take into account your health problems and the affects on your daily functioning up to and including the date of the original DWP decision. Anything that happens after it can be considered but cannot form part of the decision. I hope that answer helps in terms of your question.

    Lee
    The Benefits Training Co:

  • Tiffy1691
    Tiffy1691 Community member Posts: 27 Courageous
    Options
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Options
    FYI: I had a lateral microdiscectomy at L5/S1 10 years ago (tomorrow! Whoa!). It went well, the pain markedly reduced ed, it was miraculous. 6 weeks later the chronic pain began. Apparently I'd grow massive amounts of scar tissue around my spinal nerves, my L sciatic nerve, and up the wound track. My L leg contracted, so I could barely walk, I could turn or bend, and I was in a lot of pain all the time, with regular back spasms which were agonising.  8 months of physio, breaking up the scar tissue with rolfing (OMG so painful), osteopathy, medical massage, and  an accidental fall down the stairs which tore some of the scar tissue, and I could walk, but the pain was still there, as were the back spasms. 

    I had injections, facet injections, epidural, a radiofrequency ablation, etc. etc., more osteo, more physio, more massage, etc. I've been disabled for 10 years, and unable to work for 8 years of it. 

    I had to have the operation, as my disc wasn't getting better, but I wish I'd done more research, first. My outcome is pretty rare, but about 1/3 of microdiscectomy patients are worse after the surgery....
  • Tiffy1691
    Tiffy1691 Community member Posts: 27 Courageous
    Options
    Omg Waylay, sounds like you've been to hell and haven't come back yet. That's too much to bear. How on earth have you gotten through it upto now?
    I believe I have a high pain threshold but I know how repeated and constant pain can wear you down. I've read countless bad accounts of back surgery but I think yours puts them in the shade. Bless you xx
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Options
    Thanks, @Tiffy1691. Unfortunately I won't be coming back. :/ The pain is chronic now, which means that it's no longer a symptom, it's a nervous system malfunction. Nobody knows how to reverse the changes that happen in the brain and CNS when chronic pain develops. :/ Maybe someday, right? 

    I have been learning how to look at the pain as a partner, instead of as a hostile outside force. A pain management programme last year really helped me to learn to cope better. I feel lucky to have gotten in. 

    Unfortunately I've had a hard year My mum in agony for months, in care home, in another country, and then had major surgery (she's ok now). My Dad, who I cut out of my life, got in contact and begged to try again. Both my cats died. My landlord kicked me out with 3 weeks notice, and I couldn't afford anywhere reasonable (i.e. ground floor, with bus stop and shop very close by). I was homeless for 2.5 months, had to get rid of half my things, borrow an enormous amount of money, spend huge amounts of energy and take huge amounts of tramadol taxking taxis around to see places, etc. My friends and partners were fantastic, though. MH got way worse, so did pain. 

    I've not got over losing my life, I have to say; however, a few years ago a good friend died of cancer. We lived together and I helped care for her, so I saw the whole gruesome process. She was 61, which was far too young. After she died, I realised that yeah, life isn't what I expected or wanted, but at least I'm alive. The suffering I watched her endure was worse than my pain. I decided to try to stop looking back and start building a new life, and I have managed to, albeit a limited one. I still grieve my old life, but I keep my late friend in mind, and I keep trying to move forward, as she would want me to.
  • Peter12345
    Peter12345 Community member Posts: 55 Courageous
    Options
    Dear   @Waylay

    I have just read your message posts.

    I just wanted to send you sincere respect and hope that life is treating you well.

    And to say..   You have just totally inspired me. 

    From @Peter12345



  • Peter12345
    Peter12345 Community member Posts: 55 Courageous
    Options

    In order to control my pain I stay on the ketogenic diet with has proven studies of reducing pain perception and inflammation. I also take herbal medications such as: turmeric, CBD, Boswellia, vitamin d3 and glucosamine. This helps me manage my condition.

    Ps, I cut and pasted this above paragraph from someone else's post.
      ( I'm sure she won't mind) 


    I really do hope you are coping enough..   

    Like I said in my first post..  You have inspired me..  

    Sincere Wellness vibes of healing love your way from me. 




  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Options
    Dear @Peter12345

    Thank you! I'm glad something I wrote helped. Did you want to talk about your situation more? I take vitamin D3, folate, magnesium and omega 3's. They do seem to help. 

    I'm not feeling very inspiring atm, as I've had a very difficult year, and I'm not dealing with it very well. I'm still so lucky to have supportive partner and friends, though, so I hope things will improve with time. 

    Cheers

Brightness

Complete our feedback form and tell us how we can make the community better.

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.