Feeling trapped

painornopainthatistheques

Hi all,
Sorry if this is fragmented but this is my first post and am just letting some of the thoughts and questions flow and will type as they come.
I am disabled and use a wheelchair as the pain from walking is such that I cry with the effort involved. My physio says I should try walking more pushing myself each time to go further. I have fallen so many times broken ribs etc and in general can do little more than get around the house on my good days (maybe one good day a week) anyway I have been like this for past two years and financially we are now stable, prior to this we were running our own retail business and it was suffering with recession. My consultant at the hospital has now offered to do an op on my spine stating the risks that:
1. May come out worse than went in
2. May not improve at all
3. May help with range of movement but not help the pain.
4. May help range of movement and be out of pain but this he states is 50/50%

A question that throws up is what do I do now? If I go ahead and end up worse the strain on the family unit and our kid who is only 5 would be so much I am unsure how we would survive. Has been hard already having to get used to me being unable to play as much, and cranky moods caused by the pain.

Then if does make no difference to condition why take risk in first place?

Also apart from medical side is financial side, at moment we are stable and although not well off by any means we are still paying off business debt as me getting injured put a stop to the business, we now know exactly what we have coming in and have a budget printed out and stick to it like glue. Any change in income would have such a huge effect. by this I mean if I am still in pain as much as now but more mobile then it would effect DLA yet have no change in pain.

On one hand I can not stand the pain and would love to be out of pain but am feeling trapped in ability to provide for family both financially and emotionally and being afraid of saying yes and being worse medically. Seems like heads I could lose and tails I could lose and do not know what way to turn.

It could all work out well and I could get back to working and do my self esteem well by doing so but is the gamble one worth taking?

If I refuse the treatment would that have an effect on the benefits we get also?

Do others feel trapped like this and with them odds what would you do?
sorry for all the questions but am hoping that I may find others who have been through this and find out what they did or did not do etc.

Just so you know, I have broken my spine at t7 and it has calcified trapping a nerve and set off centre and is putting pressure on spinal cord. Also arthritis (Spondylosis) in lower spine degenerated SI joints s1-5.

whitewing

I have no experience of this.

My philosophy is that if they are prepared to do an operation then there is a good chance it will work. This would mean that there is a good chance that you will have improved movement and less pain. I would therefore have the op for the chance of a better quality of life. Even if you are not completely cured, if you can work part time then surely you would be entitled to tax credits. If your pain is reduced, then your mindset will be different. Pain is so debilitating.

Poorer and happier is better than richer and miserable, provided that there is enough to live on, and in this country there is a lot to be appreciated.

painornopainthatistheques

whitewing wrote: »

I have no experience of this.

My philosophy is that if they are prepared to do an operation then there is a good chance it will work. This would mean that there is a good chance that you will have improved movement and less pain. I would therefore have the op for the chance of a better quality of life. Even if you are not completely cured, if you can work part time then surely you would be entitled to tax credits. If your pain is reduced, then your mindset will be different. Pain is so debilitating.

Poorer and happier is better than richer and miserable, provided that there is enough to live on, and in this country there is a lot to be appreciated.

Thanks, but as I say chance is only 50/50 on it being any kind of improvement, and much less on it being a cure all. Has taken two years to get him to try anything, previously he stated there was nothing he could do as anything he could do was of little benefit. The degeneration at the bottom of spine is irreversible, and although the trapped nerve and pressure on spine at t7 can be eased the damage lower down is causing as much of the problem as to make it irrelevant. Now we think he is only offering this due to our constant requests for any help to ease the pain. I agree with you that Pain is so debilitating and at times I have told him he could cut off my legs if it would ease the pain, but at other times when the pain management is working and the quality of life is better feel it is ok and I can cope if only it would stay like this. pity it never does.

I guess more than anything for me the fear is the medical unknown and do I risk the possible damage at t7 being worse and me being totally imobile from there down or not. I know only we can decide this in the end but hoped to find others either going through similar or who have come through with either good or bad results who could add to this with their results and reasons for doing so or not having the op if thats the case.

stef240377

My Husband has ankylosing spondylitis and similarly to you has the lower spine degeneration where theres calcification which is starting to seep in to the hips.

For 3 years now we have pleaded and begged with health professionals to sort out his pain management but its all been from our POV a waste of time. He has been on up to 30+ tablets a day and anti TNF therapy. No pain relief whatsoever and was referred to a physcologist as the Rheumatology consultant was rude enough to suggest his pain was 'all in his head'. Luckily regular blood tests show the inflamation markers are permanently raised so its not depression keeping him feeling like this.

You have my every sympathy and i know there will never be a miracle cure. Are you part of any support groups for people in the same position as yourself? This way you can gauge how successful the operation would be.

My Husband has been told theres no operation available for him as there are far too many nerve endings in the area they need to repair so more damage could be done. Now its a life time of rattling like a tube of smarties and grasping/enjoying the good days as and when they arrive cos they are few and far between.

when_will_it_end

i do not suffer with as bad a back pain as you do but my auntie does she has had 3 ops now on her lower back being told afte each one the chances of the same thing happening were very very slim but they did happen again she has been told that if this does happen again they can not operate as there is far to much scar tissue so she is living a lifeon many mesd plus morphine i have seen the pain she is in an its awfull i just want to wish u luck on your descision what she weighed up was a life of pain or a life in a wheel chair she wants the later so that she can still enjoy her granchildren an at least do some activities with them at present she cant do much but read

xx

painornopainthatistheques

Thanks Steff and when will it end.

My sympathy not only for your loved ones but also for you. Many even people at my church always ask how I am and how I am coping with this but loved ones are suffering just as much. They do all the care work and are the nurse, shrink and everything else as well as suffering the pain of seeing their loved ones in pain. Always being strong for us and giving us the will to go on when we would otherwise give up.

If only they could find a way to measure pain then doctors would not be so flippant with the things they say. I called my consultant a and excuse my language, a useless !!!!!!! that must live on another planet the day he said that as I used to be an athlete I should think about taking up a sport and get out there again and train to run. That day was a week after falling down the stairs breaking two ribs after the shooting pain caused my leg to give way.

I have had a second hand rail fitted to assist and the housing association we are with have me on the list to move into a bungalow after their OT report agreed with social services that this house is unsuitable for my condition. The same consultant had a month earlier to me having a go at him said in the social services report that my condition will never get better and will only get worse even with treatment it can only delayed. He has given off so many mixed messages I no longer know where I stand.

I am on the waiting list to see physcologist and as the waiting list for an electric wheelchair in my area is three years we purchased our own. How it has opened a whole new world of possibilities. we have been to Brugge on the ferry and all sorts, and yes the good times are small next to the painful days but we get used to the pain and just take the pills and top up meds when needed. I would swap life in the wheelchair and no pain any day as long as could still move and have the dignity of being in control of toilet needs but I would be risking all mobility from T7 down and double incontinence.

The question I would like to know is if I did refuse treatment would it make a difference for my benefits claim? Can they punish me for refusing?

painornopainthatistheques

over 140 views and so little discussion, thought this was a forum where people wished to share advice and experiances. come on guys give me your views on the questions raised.

whitewing

My view is that you don't want to have the operation in case it makes you better and you lose your benefits and are therefore unable to repay your business debts. I can understand that feeling as I have been in the position that I feel that I have no control over money.

My personal opinion is that an operation should be based purely on its potential for making you better and whether it is a risk worth taking to improve your quality of life, leaving the financial stuff aside. Now that you have a budget and have proved that you can stick with it, you will find that opportunities arise to replace lost income. That's not to say that you will necssarily always have more money than you have now, but you may, or you may make it go further, or you may be able to take up offers (eg I wanted a replacement sofa. We have a list of 'wants' that we prioritise. Sofa was further down the list after holiday and car. A relative has given us their old 3 piece, which is delightful and a perfect colour match. It's only because I forced myself out of the house when I didn't feel like it that I was around when the offer was made).

I think you want someone to say, if this happens, you still get this, or you lose this but you get this instead. I really do understand why you may think like this. I don't think it's the right basis for the decision though.

when_will_it_end

whitewing wrote: »

My view is that you don't want to have the operation in case it makes you better and you lose your benefits and are therefore unable to repay your business debts. I can understand that feeling as I have been in the position that I feel that I have no control over money.
.

bit harsh but i do get where you are coming from i think that her asking means that maybe she thinks the op may go the wrong way an make her illness worse or else asking about would refusing the op stop her benifits wouldnt matter

i dont think that refusing would but im no expert as the op does have a high success of not working an making your life even harder why not research other ways of trying to improve the pain now have you been to a pain clinic or seen a pain psycologist or it that what you are waiting for now?
i dicovered a drug that may help my aunt something i dont think the docs looked at as her age didnt fit the criteria but she is in the process of dicusing with them

sounds to me that your scared an thats totaly expected

xx

veryunsure

I have had back surgery and it didn't work. When my neck was injured my surgeon said he could operate but didn't want to because of the risks and the fact that one spinal surgery had failed. Every other medic I have spoken to says to avoid cervical & thoracic spinal surgery unless your life is threatened by not having it.

I am now under the care of a pain management unit. My meds have been altered and some removed but more efective ones added. Their view is that it's better to use fewer but sometimes more powerful medications. I am due to attend a pain management course in January. The aim here is to learn how to live with pain.

It is very difficult to know how 'to be seen' to be doing all you can to improve your situation. My employer thinks I should be banging on the doors of all my medical experts until they can wave a magic wand to make me better. Sadly, it isn't going to happen.

Good luck and ignore those who say you are not pursuing treatment just to keep your benefits. Ask them if they would swap spines with yours.

Mojisola

painornopainthatistheques wrote: »

My consultant at the hospital has now offered to do an op on my spine stating the risks that:
1. May come out worse than went in
2. May not improve at all
3. May help with range of movement but not help the pain.
4. May help range of movement and be out of pain but this he states is 50/50%

Just so you know, I have broken my spine at t7 and it has calcified trapping a nerve and set off centre and is putting pressure on spinal cord. Also arthritis (Spondylosis) in lower spine degenerated SI joints s1-5.

With odds like that, I wouldn't undergo a major operation. It sounds a bit like an offer of last resort and the consultant won't have to live with the outcome but you will.

Not everyone is helped by them but have you been offered an appointment at a Pain Clinic?

I really sympathise with you - constant pain is awful. I wish there was a way of stimulating pain artificially and that all medical students had to live with severe pain for a week as part of their course. Many doctors appear to have no idea how constant pain affects people.