I guess on a forum here, we’re all suffering more than being full of the joys of spring.
I will get straight to me point or question. 20 years ago I had an accident were I needed spine stabilisation, the dreaded stabilisation. At L3 L4/5. After a month a pedestal screw fell out and had to be replaced by a larger screw in thickness and length. That’s when the problem started as the screw went too far and encroached in to my nerve route canal.
From then on I’ve suffered pain constantly, but carried on working, driving and flying as I was a Businessman averaging 70,000 miles a year. Pain clinics and all tablets available, no good, Fentynal patches ok but addictive. So carried on taking just Solpadol tablets of which could only be 8 a day. Back got worse as years went on and 2011 a car basically rammed me for a better word, this is where the trouble started, as I knew something went wrong I had an mri and sure enough, the bigger screw went in to my spinal cord. Since then I’ve never worked, as can’t stand, use arm and hands properly, and body felt I was in a fire head to to toe 24/7.
Went through different trials and nothing until I was a on of 4 in Lincolnshire to be trialled with the Nevro high frequency nerve stimulator. It worked, if there was a God I nearly believed. 90% pain was gone with this embedded inside my body, and some pain but nothing as when accident happened. 2013, yep!! Hit by another car and seat belt tightened and broke the implant and within seconds my life was back to hell and has been ever since. It laid dormant in body for 2 years before St Thomas’s/Guys agreed to remove and see if anything could be done. I asked for new implant, but my CCG for Lincolnshire said no at £25,000 each. I have been on Morphine since 2013, then bedbound for 2 years, I am now on Ketamine as well, and side effects has done the nasty on me and I’m to lose my bladder., so no pain meds at all now, and my legs are the worst and horrid pain, so I’m sorry to bore you, but after 2 years of battling for a cure for my legs especially, as metalwork in back can not be removed, question is,
HAS ANYONE OR KNOW OF ANYONE asked for thier Legs removed and NHS agreed ?????
I want my legs removed now basically, I’m a useless piece of meat and feel like I should be dead. People say I’m mad for legs removed, but they never give me an option for treatment, so I want them removed. I would just like to know if anyone has at least asked the question to NHS and their response????
Regards
Ian
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DavidBScott67
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Thank you so very much for basically replying. That’s quicker than I normally get via our health services😂 but joking aside, we can’t afford to lose our one little treasure we have, in the NHS.... I understand a little with your health providing, if I’m told right, that you basically pay for most things all medical ??
I sincerely thank you for your reply, it’s so nice and so genuine. I’m laying here in bed at nearly 12.30pm lunch and the sun is shining through my window, but that’s all I will get to see.
I haven’t put things like, and you will think especially the people here in the UK, that I’m creating some sort of story, but our local council should help with disabilities and changes in the home where needed. I feel like a prisoner, as I have been turned down by them for Wet rooms, a through ceiling lift that would get me out of the house with my carers in a chair, as by law a stair lift is against Health and safety rules for spinal problems, so all turned down including ramp for out side, widen doors. A total of £24,000
Why? Because my wife works, but all her money goes to run the home as does everyone’s in uk, so we live on £214 per fortnight. The council told my wife she can get £165,000 worth of loans to get work done. Well !!! We can’t as we lost the last last because the person that hit me in the accident 2013 fled the country while on mobile phone in hand which here is illegal. She failed to stop, burnt car out 2 days later, summunds to court, but fled back to Iran where she is from. She got 6 months prison sentence, but will never do the time.
My brain send my spinal cord in to locked spasms which means I curl up in to a ball for up to 15 hours in pain I didn’t think they could make...... 37 ambulances later since this new thing has come along in September 2018 and now ambulances have stopped coming. They put a care plan in, which doesn’t work. They stopped because Entonox Gas and air and drip fed Morphine works, but banned as they said I am getting to be a junky on it. How stupid, I know the dangers of Entonox. They also refuse to take me by stretcher out of my bed and down stairs to ambulance. So!!!!!!!! So !!!!!!!!! The plan is still in place, they say get to A&E in car. My notes by surgeons say do not bend because screw in spinal cord. So I have to take the Ketamine which has given me one of the many side effects and that is to have my bladder removed. So no GP will home visit, no out of hours will visit and no ambulances to take me to A&E to give me By the Doctors there everytime is ??????? Entonox lol. It’s a joke...... so I lay here in so much pain that the letters have gone to my local government MP to take to Britain’s Parliament. Sorry if you’ve fallen asleep.
Ohhh Ian I’m left nearly speechless at reading your very detailed and much appreciated reply. My heart breaks 💔 to read how you are pidgeoned holed due to liabilities because of your critical case.
I have spoken out against this type of treatment before but I upset others by doing so. I don’t mean to hurt anyone’s feelings but hearing stories like yours really angers me 😡🤯.
You and your quality of life is just as important as anyone else’s.
GRRRR!!! Sooo sorry but just had to growl at your situation.
Here in the USA 🇺🇸 we don’t have National insurance and pray we don’t after hearing all the difficulties of how it works especially in cases like yours.
President Obama pushed the uninsured citizens into his insurance plan. It caused so many problems for many people who already had some sort of insurance. The benefits were not the same for everyone.
Thankfully our insurance was not affected because we have General Motors retiree insurance. This was very much refuced when the company faced bankruptcy in the modern depression of 2008 when so many companies failed and our economy tailspinned.
As a result of all of this GM decided to dump all of its retirees at the time and no longer provide any of its contractional commitments it made with its workers when the hired them. As a result of this they turned the retirees over to the Union stewards and they are managing us currently.
We are both 67 so we are now automatically thrown into the elderly national insurance program which diminishes our Union insurance greatly. But we are still very blessed to have this coverage. Yes we do have copays.
I’m so sorry that your wife’s income disqualifies you from getting your needed disability care. This happens here too. Some couples have divorced just so their spouses would qualify and get their needs met.
I’m sending you a very gentle gentle hug 🤗 and your wife too for all you’re enduring. I’m so very sorry that the criminal who caused your accident that left you in this critical crisis fled back to Iran. Life is so unfair at times.
I just don’t understand why you can’t be allowed to stay on your Etonox Gas and air plus the morphine drip. You need this medically for your critical condition who cares if it’s addictive...that’s not what you require it for. I’m appalled that no one is trying to resolve all the issues for you so you can get the aid you need.
I’m glad you sent letters to Parliment for your case and I pray they will come to your aid and your needs be met in total.
I just said a very special prayer 🙏 for you and your wife.
I care about you and your wife very much. I’m a born again Christian and believe that you both are my brother and sister.
I’m am here to support you both and although I know I’m limited I’m still able to empathize and offer you my emotional and spiritual support.
Please take care my new friends and if you don’t mind keep in touch. Best wishes to you both.
EvaJo. 😊🌸🌿🦋🙏🤗💕😘👼🕊
Wow @DavidB what a dilemma you are in..can i tell you that a amputation comes with terrible phantom pain after which is pretty awful I nursed a guy who had diabetes related amputations his suffering was Awful after. Major surgery is very risky all the time,have you discussed this with your family,,cutbacks on the NHS are high now and finding a sympathetic surgeon will be very hard. But There are surgeons on the NHS who will do it on the never never privately they would need to be sure you would survive in order for them to get paid otherwise a high bill left for your family...have you not been offered pain. Clinics,hydrotherapy or even counselling?
Hi and thank you for your concerns. If you see my response I’ve just sent to someone I’ve pasted to you below. I was before I couldn’t do the journey travelling from Lincoln to James cook Middlesbrough, to a professor El Darby to get a prescription for Ketamine. He tried referring me to Bath hospital for how to live with pain, but couldn’t get there as too painful lol and that’s seriously the true. Here’s the rest of my battale since 2013 in a really small nutshell as I could make you cry and my wife works for NHS Mental Health on Board and we are not rich by far I can assure. One of us ie wife young son or me goes without a main meal at night, well not true, my son always gets a meal. Below Is one of 6 battles hence take my legs or let me die please and say that with every cog in my brain working beautifully.
Hi there!!!
Thank you so very much for basically replying. That’s quicker than I normally get via our health services😂 but joking aside, we can’t afford to lose our one little treasure we have, in the NHS.... I understand a little with your health providing, if I’m told right, that you basically pay for most things all medical ??
I sincerely thank you for your reply, it’s so nice and so genuine. I’m laying here in bed at nearly 12.30pm lunch and the sun is shining through my window, but that’s all I will get to see.
I haven’t put things like, and you will think especially the people here in the UK, that I’m creating some sort of story, but our local council should help with disabilities and changes in the home where needed. I feel like a prisoner, as I have been turned down by them for Wet rooms, a through ceiling lift that would get me out of the house with my carers in a chair, as by law a stair lift is against Health and safety rules for spinal problems, so all turned down including ramp for out side, widen doors. A total of £24,000
Why? Because my wife works, but all her money goes to run the home as does everyone’s in uk, so we live on £214 per fortnight. The council told my wife she can get £165,000 worth of loans to get work done. Well !!! We can’t as we lost the last last because the person that hit me in the accident 2013 fled the country while on mobile phone in hand which here is illegal. She failed to stop, burnt car out 2 days later, summunds to court, but fled back to Iran where she is from. She got 6 months prison sentence, but will never do the time.
My brain send my spinal cord in to locked spasms which means I curl up in to a ball for up to 15 hours in pain I didn’t think they could make...... 37 ambulances later since this new thing has come along in September 2018 and now ambulances have stopped coming. They put a care plan in, which doesn’t work. They stopped because Entonox Gas and air and drip fed Morphine works, but banned as they said I am getting to be a junky on it. How stupid, I know the dangers of Entonox. They also refuse to take me by stretcher out of my bed and down stairs to ambulance. So!!!!!!!! So !!!!!!!!! The plan is still in place, they say get to A&E in car. My notes by surgeons say do not bend because screw in spinal cord. So I have to take the Ketamine which has given me one of the many side effects and that is to have my bladder removed. So no GP will home visit, no out of hours will visit and no ambulances to take me to A&E to give me By the Doctors there everytime is ??????? Entonox lol. It’s a joke...... so I lay here in so much pain that the letters have gone to my local government MP to take to Britain’s Parliament. Sorry if you’ve fallen asleep.
One would hope your Wife is getting carers allowance or attendace allowance, she should claim tax allowances too as the main earner, and you are getting PIP? If your home is rented then you should get help with c. tax and rent. if you own it then c. tax should be available..I am assuming you are both british David.. Badger your local MP for help, get newspapers involved its amazing how the government move on bad press. Write to Amber Rudd the DWP mInister, she seems to have a different view on benefits. Good Luck moving forward.
Oh my, you have been through so much and seem to have a complicated problem with your back. I must say that I also think Amputation is an extreme measure and also think it wouldn’t be the answer to stop you pain. As NG says people can have phantom leg pain after amputation. Also the NHS will not amputate legs unless absolutely necessary.
You mention St Thomas/Guys hospital and pain clinics. Have you also been referred to the FMS Clinic? You didn’t mention if you have Fibromyalgia but I am assuming the trauma has caused it? Has anyone ever offered Capasacin patches for pain? Also as you have a complex picture involving back surgeries, could you ask the consultant whether they would consider medical cannabis to try for pain. I am assuming as the implant failed the CCG feel it is likely not to succeed in the future, it is sad that the NHS is now so stretched meaning many people do not always get treatments. They unfortunately have to make some difficult decisions and this is the reality I suppose. It doesn’t seem right to leave you in this pain with little or no real quality of life and I feel they should be looking at other options as suggested above.
If you got the pain under control, do you think you could get stronger and start to rehab a little. I wonder if it is worth joining the Pain Concern community on HealthUnlocked, as they may also have some suggestions although I must admit with the back problems it does make finding symptom control a little difficult as the consultants you’ve seen are very knowledgable and given you possibly the best advice for pain relief.
I sincerely hope you can find something to ease your pain as I can empathise entirely. Living with pain everyday is an awful place to be in and I hope they can help you further. I would have thought a case like yours warrants at least looking at medical cannabis maybe it is worth asking.
Wishing you all the best
Emma
P.S. I noticed you haven’t locked your post to this community only. If you wish to do this, here’s a post explaining how to do this
Dear friend, You have been through SO much! I have to ask: why don't they just replace the screw? I'm a longtime sufferer of back pain, but not like what you're going through. I don't have insurance, so can't get the surgery I need. However, you do have insurance, but can't get the help you need. How horrible. I don't know what to advise, but I hope you get some long overdue help soon! You'll find lots of sympathetic people here who, at the very least, will just give you some support and love!
Hi and thank you for replying and I don’t mean to be late replying, I’m just suffering so bad. No one in this country and have a letter to show, will attempt the operation to remove the screw because of paralysis. One Doctor maybe showed an interest and he is in New Zealand, but I can’t afford and NHS or CCG refuse the costs. But I thank you so much for at least caring, more than I get from NHS. I have to voice dictation all calls and refusals from as simple as my GP deletes my emails, but I’m told to go through GP in work hours. Can’t speak on phone as never there. So I have to note everything as that’s nothing to ways Lincolnshire NHS Trusts treat me, or sorry!!! Lack of treatment. I am going to Kill myself by this weekend as no one in positions who promised to come back, ever do. The longest running waiting response so far after 26 reminders to them is 18 months. It’s going to take my death for at least a weeks worth of “Oh my God” responses from NHS Lincolnshire and then I am forgotten about and someone else will take my place in suffering and frustration, beyond to the extent of Japanese water torture they used in the war. It’s so cruel.
DavidBScott, I apologize for my late response. I hope that you did not harm yourself!! Please stick around, if only to see if you can find some support and some practical help from the people on this website. I find it amazing that a doctor didn't hesitate to put the pin in your back, but no one will touch it to take it out. How can they leave you like this? Please continue to advocate for yourself. Make a big noise, if you need to!
I'm so sorry to hear of your horrific suffering and let downs by your local CCG, and your awful bad fate being in those car accidents.
I've not heard of anyone directly requesting amputation so not I'm not helpful with this question. But, I'm wondering if you have written directly to NHS England with regards to further treatment, and the disgraceful refusal of your Disability Facilities Grant, from you Local Authority? I'm thinking if ever there was a person that should receive a DFG for a downstairs wet room, specialist toilet, downstairs bedroom and hoist, it should be you! From what I have gathered, the LA should not be looking at your wife's income, but looking at savings, and I know they can, at their discretion, ask for a contribution to your DFG if you have over so many thousand £ in savings. The DFG is awarded based on savings, plus home ownership/mortgaged property, and the need, based on recommendations by an Occupational Therapist. They may well of sent you an OT which is employed by your local LA, and they may have written recommendations, in a manner to 'suit themselves' and if this is the case, I would highly recommend getting an OT assessment from a private OT as they will not be biased. If they never sent you an OT from the LA, then you must get your wife to do a self referral to community OT through Adult Social Care (if you're not up to doing this). I'd also recommend speaking to Disability Rights UK as I know there's been a lot of discussion over the way these LAs assess for the DFGs, and I believe there is an overhaul going on in relation to this. I think lots of pushing and complaints, might help and get you what you definitely need. You can receive up to £30,000 in DFG to actually build an extension with wet room on your property, your LA should be ashamed of themselves.
I live in Hertfordshire and I know all to well how LAs try to dodge support, mine agreed DFG for a wet room for me, but wanted to put in my existing and only upstairs bathroom; ridiculous and they didn't care less about how it would affect me still having to haul myself up and down stairs, or the impact that it would have on my 2 of 3 sons, who have Autism and sensory processing disorder, and can't bear the sensation in a shower, they only tolerate a bath. I had to put my boys needs before mine and refused the DFG, and risk going up and down stairs 😞.
I'd also recommend looking for a disability specialist solicitor because a letter from them, to Adult Services at the LA, outlining their inability to assess your needs correctly and lawfully, can go a long way in getting a change of decision.
Lastly 2 more suggestions, have you read the LDN book by chance? I'm wondering whether LDN could help with your pain, I'm reading the book at the moment (its about Low Dose Naltrexone for chronic pain), I've heard some excellent results for people with chronic pain and fibromyalgia. From what I can gather, and from what my own GP says, the best route is to be prescribed private prescriptions as CCG won't fund this drug for this particular treatment, I'm looking at going down this route myself. Lastly, just checking you have put in application for PIP, as you should be entitled to this money from what you've said; its not means rested so your wife's earnings have no bearing on this benefit, and in receiving PIP, it may help you out with getting additional help in other areas.
All the best and I hope that your local authority and CCG stop making you suffer, and do the right thing for you with support and treatment.
As the member above mentions also it might be worth looking into LDN, that is another good suggestion from Claire133
Also, I don't know if you'd consider or feel about it but some people turn to pages like GoFundMe to get the funding they need for Healthcare. Maybe you could try to raise enough money to pay for the implant and the NHS may consider fitting it as you've paid for it with donations from others It might be worth a shot.
I am sorry to also read you've been let down by your local authority in regards grants to adapt your home. It's dreadful at the moment for vulnerable people as the benefits we get or pay from employment as you say only just covers housing & living costs and it's getting worse with UC. So many are trying to raise funds themselves for Healthcare and this is surely a sign the NHS and social care system is failing miserable (with your story confirming that sadly) No wonder so many are using Foodbanks whilst the powers that be seem oblivious to the plight of those living of PIP and ESA. We're all in the same boat it seems with broken paddles.
When I was last nursing I cared for a woman with a Spinal Nerve Stimulator, but hers was far more helpful than yours appears to be.
As you have had a problem with the replacement screw impinging on your spinal cord, have you never considered suing the Hospital Trust which damaged you? They appear, to my eyes at least , to have been negligent in their duty of Care.
Do you get PIP? You could attack the councils who are denying you facilities by using the Equalities Act of 2010, but you will need a solicitor to help you.
I have noticed that GPs, CCGs and Hospital Trusts are far less willing to step up and take their responsibilities seriously these days, as they are all being hammered from above by the financial constraints.
I am afraid that, as someone else has already pointed out, that amputation will be very unlikely to help you, due to Phantom Limb Syndrome.
One last thing. Do you own your house? if you do, maybe DIY SOS might be able to help. It costs nothing to try.
To everyone leaving comments/ care and compassion, I thank you so much and a lot of it is so so interesting and never heard of before. I’m not in a good place at the moment and very suicidle at present. But I will get past that, I’m just asking if people who have made efforts to speak to me, firstly you are all so very kind for taking the time to do so, could people who see the replies, tell me what all the abbreviations mean please as that’s how badly I have been let down by out local councils, that I’ve no idea what they mean and would be so helpful. Thank you so much. I truly mean thank you to all....
I'm confused as to why the metalwork in your spine can't be removed and or replaced ? Removing limbs does not always remove pain , as mentioned above phantom pain can be an issue . Not to mention the fact that it is major surgery . Have you seen any spinal / orthopaedic specialists ?
No surgeon will attempt this operation in the UK and have letters to say. It’s just too dangerous and possibly die from Blood loss and also become paralysed
My friend did it though it was hard to get a suregeon who would remove the leg .. they had chronic pain in it - but even when they found someone it wasn’t easy they had to go through counciling and disappointment but eventually it happened and well since then they have taken part in so many tough mudders etc ..
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Does fibromyalgia get blamed for every ailment
Aching ankles & legs
Feel like legs and feet are “Wrapped in Cling Film!” 
Fibromyalgia of the Urethra.
another part of fibro or something else?
