Feeling trapped

sunnyone

veryunsure wrote: »

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.

Good post.

Invalidation

I was diagnosed with Degenerative Disc Disorder in 1993 thoughhave had my problem since the early 80's, and put onto DLA at Highest rate IB and IS.

I know this is a bit off topic but you WILL adapt. I cant recomend whether you should have surgery, but if you can still move about then dont have it.
You are still mobile. Having the operation could mean paralysis or even increased pain. Its a last resort

only_mee

Mojisola wrote: »

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.

:beer:
I couldn't agree more

millym

I do feel for you, as it must be a very difficult decision. I know what severe, constant pain is like, but I don't know what I would do if I was offered an operation with the low chances of success that you have been offered. I suspect that I would refuse. Better the devil you know, and all that.

I wonder if you have tried a tens machine to help your pain. I got one a few months ago and it does help. Doesn't totally take the pain away, but definitely has an effect, although only while the machine is actually on.

For anyone considering getting one, do not buy one of those cheap units from the chemist. They are so low powered that they won't help anyone in severe pain. You need a dual channel unit with a power output of at least 100mA

Mine is a Logistim TN11 that I got from a company called Nature's Gate, and has an output of 130mA. I love it, although I know they don't work for everyone.

If I were you, I would try every other treatment available before going down the surgery route. I wish you the very best, whatever you decide, just a pity the prognosis isn't better.

painornopainthatistheques

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.

Not quite it is control as a family we have, but have been to see GP for advice and he thinks the op would be bad for me. Also if i do have the op and things do not turn out well and I am unable to do less than can now how that will impact on family life. I do not mind IF they said that they could do it and I would 100% be healthy with no side effects I would jump at it and not care about the benefits as we would both be earning enough working full time.

Point is they can not give any good odds and not sure the risk is worth it.

Broken_hearted

50/50 are not that great if you have some quality of life now I would stick with it.

painornopainthatistheques

Mojisola wrote: »

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.

My GP says the last scan showed slight improvement in the amount of pressure on spinal cord, and that maybe some of the pain now is psychological.” He also states there is nothing more he can do. I am due to see psychologist in September. Have already been to pain clinic and physiotherapist.
When pain killers work and not going through inflammation then life is bearable but as you know this is not all the time and silly things start it off, our son tripped the other day and instinct made me reach out to stop him, I am still paying for that one

Mojisola

painornopainthatistheques wrote: »

My GP says the last scan showed slight improvement in the amount of pressure on spinal cord, and that maybe some of the pain now is psychological.” He also states there is nothing more he can do. I am due to see psychologist in September. Have already been to pain clinic and physiotherapist.
When pain killers work and not going through inflammation then life is bearable but as you know this is not all the time and silly things start it off, our son tripped the other day and instinct made me reach out to stop him, I am still paying for that one

This is something some doctors resort to when they can't help a patient further - "If I can't make you better, it must be all in your mind". Patients with ME and Fibro come across it a lot.