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Original poster

Referral to Pain Clinic/Specialist

38 replies

ilove · 28/02/2012 12:11

I have ongoing problems with my R arm to the point where the surgeon has said my only options are either 1) ablate the ulna nerve, 2) remove the ulna nerve or 3) amputate above the elbow.

I'm on tramodol, morphine, naproxen, brufen, paracetamol, and several of each every day.

I have HAD ENOUGH of the pain/tablets/side effects - this has gone on for YEARS.

I have no use of my arm - it lives in a sling. They operated on it last August, it is no better. The nerve is shot.

I do NOT want any more drugs - I need thi sorted. I do not care about not having the use of my arm again, I really don't. I accepted long ago that it was knackered/useless.

BUT I am wondering what the response/attitude is like of these clinics? I'm referred to one in leeds - anyone any experience? Will they actually listen to me? Or will they just force me to try more and more drugs that just don't work?

OP posts:
Mandy2003 · 28/02/2012 12:35

I found the Pain Clinic totally brilliant! Not only was the specialist really well informed about all kinds of drug treatments, he was also thoroughly aware of all surgical options as well. An extremely skilled doctor.

CMOTDibbler · 28/02/2012 13:50

My mum has been seen by the pain clinic for a few years now - if anything, they try to get you off drugs rather than adding them. They may offer intensive physio (sounds odd when you aren't trying to get more function, but it can be very effective against nerve pain ) or nerve blocks. A nerve block could be fab for you as you wouldn't lose function from it.

I've had nerve blocks after surgery twice on my useless arm, and it was heaven.

BTW, my hand surgeon said that someone with existing nerve pain was the worst possible candidate for amputation as you are at very high risk of having phantom limb pain which is even harder to treat

Ben10HasFinallyLeftTheBuilding · 28/02/2012 14:30

My friend also was told that she should not have an amputation of her foot as she would still have the same pain.

Have you tried the anti-convulsants ie gabapentin or pregabalin for nerve pain?

Sorry you are struggling with the pain so much :(

Original poster
ilove · 29/02/2012 09:28

That's interesting re the amputation. I have had intensive physio and also acupuncture, but it is so painful I cannot be touched on my arm at all, I can't put any pressure on my fingers or carry or hold anything.

I haven't had Gabapentin - I read enough about it to see that the side effects were too great to risk - I'm not good with drugs that alter the seretonin levels in my brain unfortunately.

CMOT what kind of nerve block did you have? I need something permanent - a temp numbing for a few hours is no good

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CMOTDibbler · 29/02/2012 09:38

Have you been diagnosed with CRPS ? The hypersensitivity sounds like that is what it could be, and CRPS is treatable, but it needs specialist input. When I was first diagnosed, I couldn't breathe on my arm without it being agony (if there had been a saw handy, I'd have cheerfully sawn it off there and then), and intensive desensitisation and physio has reduced it to mostly manageable.

My blocks were only intended to be temporary and try and stop a CRPS flare after the surgery, but I know they can do them as longer lasting

smee · 29/02/2012 10:21

Nerve blocks should last longer than a few hours. I'd bet they're used to people who are at the end of their tethers like you. They should be able to give you clear ideas as to what they can do. I was with one for a while with back problems and they were very good, so worth at least hearing what they offer I'd say. Poor you though, sounds horrible. Sad

Original poster
ilove · 29/02/2012 11:02

CMOT that's exactly what iot's like. It is tubigripped from armpit to wrist so that clothes cannot brush against it as I'm on the ceiling when they do. The nerve is swollen, frayed and knackered, but all the de-sensitisation the physio has tried hasn't helped - i honetsly am terrified of the woman on Friday trying to touch it - my automatic reflex is to lash out with my other arm :(

i know EXACTLY what you mean re a saw - that's the stage I'm at.

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CMOTDibbler · 29/02/2012 11:25

If I were you, I'd be asking about CRPS, and then about doing one of the intensive courses to get down from the place you are now. The National hospital in Bath do them, and they are supposed to be fabulous.

Theres an awful lot that can be done to help you and maximise the use of your arm - have you been seen by a hand specialist surgeon and hand therapist ? I was very, very lucky that the community physio I started seeing 5 weeks after injury had trained at a specialist unit and so had an awful lot of experience, then my second hand surgeon had a hand therapy team

Original poster
ilove · 29/02/2012 11:31

I had the initial accident 37 years ago, and the joint has groen deformed and my arm has never been right. But my mum was told I was lucky not to lose my arm and that we had to put up with it.

It has worsened and worsened - I've been on morphine for over 10 years - and finally saw a surgeon privately last year who operated in august to release and shave off some of the thickened area of the nerve.

It didn't have this sensitivity before then...it just frigging HURT. Now, I have both - and Ulna Nerve Paralysis (my three fingers are curled and need pushing straight or into a fist with my other hand)

Gah. They should've just taken the bugger off when I was 5.

OP posts:
Original poster
ilove · 02/03/2012 18:51

I am going into hospital on Tuesday for a nerve block through my neck, I have pregabelin tablets increasing to 150mg x 2 a day within 9 days, and lignocaine patches 12h on 12h off.

She will see how the nerve block goes, can repeat it 3x and then look at spinal cord stimulation (killing the nerve permanently)

OP posts:
CMOTDibbler · 02/03/2012 19:32

Sounds like they are really on the case - I hope the nerve block works for you.

Do you feel positive about them ?

Original poster
ilove · 02/03/2012 20:16

I am absolutely petrified. I will be awake and they are going in through my neck. I have the first patch thing on and it just feels cold rather than numb - have you had them? Rather dizzy from the first pregabelin too.

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CMOTDibbler · 02/03/2012 20:34

I haven't done lignocaine - but patches can take a few days to really get going.

Pregbalin made me terribly nauseous and I had to stop after a couple of weeks as I just couldn't hack it, but you have to give it time. Dr said sometimes you have to build up slower to get acclimatised.

Is it the stellate ganglion block they are doing ?

Original poster
ilove · 02/03/2012 20:37

No idea which block, she didn't say. Will see how I get oon with the pregablin - she wants to ramp it up quickly if I can copee with it.

Did u have issues with your GP prescribing? Mine weren't happy :(

OP posts:
Original poster
ilove · 02/03/2012 20:38

scuse typos, typing flat on my back with laptop balanced

OP posts:
CMOTDibbler · 02/03/2012 20:52

TBF, my GPs are brilliant about prescribing whatever I ask for Grin I think it makes them feel better that they can do something about my whole sorry situation.

Original poster
ilove · 02/03/2012 20:58

I don't know your backstory CMOT, tell?

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CMOTDibbler · 03/03/2012 07:36

18 months ago I fell off a horse, landed on my hand and broke all the little bones in my wrist, and also dislocated it in a way that some of the bones got shoved into the nerve bundles. Just the dislocation is described in the text books as 'devastating'. 3 operations later, it became apparent my fingers weren't moving... And then the physio suggested that maybe my forearm should rotate too, and they conceded that I'd also broken my elbow.
So now I can bend my elbow and move my thumb, but nothing else below the shoulder (which is now stiffening) works, but mostly no one actually knows why exactly. Hand surgeon is going to present my case at a conference to see if anyone else has any ideas.
And now I have tennis elbow on the other side which is just Not Fair and is bloomin painful

shodatin · 04/03/2012 01:02

Pain clinics can be wonderful, even if pain cannot be lessened it can be made easier to bear (been to two in different areas but not Leeds). Good luck.

Original poster
ilove · 04/03/2012 12:51

That sounds like a nightmare CMOT. Where are you at now in terms of movement and useage? And have you found a way to peel and mash spuds? I thoroughly object to buying ready made mashed potato!!!!

Shodatin how has it helped you? I'm very, very weepy today which is a nightmare as it's my Grandma's 90th this afternoon...need to sort my face out :(

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CMOTDibbler · 04/03/2012 13:49

I can use my thumb and thats it - it doesn't work terribly well, but it helps. If I could rotate my arm things would be easier. Realistically that arm doesn't get used much as I can't even hang stuff off it

Potatos, I am a slattern and always cook them with the skins on anyway, but I have a spiky chopping board that you can spike things on to peel or chop and some heat resistant sticky mats to put pans on to mash in. Also a little silicon oven glove thing that makes getting stuff out much easier

Original poster
ilove · 04/03/2012 22:15

ooh - where did you get the board? link?

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CMOTDibbler · 05/03/2012 10:11

I got it from the fab disability shop near us - if theres anything like it near you, well worth a visit as they have all sorts of stuff. Its like this one

Original poster
ilove · 07/03/2012 10:37

Had the block done yesterday and whilst it was not pleasant it was better than I thought it would be. It was the stellate ganglion block yes, but I forgot to ask what benefit I should have from it - as at the moment I feel no different :(

I have an appointment with her again in 2 weeks, no idea what to expect in the meantime though.

OP posts:
CMOTDibbler · 07/03/2012 14:07

From what I understand, the stellate block is for CRPS, and it just blocks the sympathetic nerves so it won't feel heavy/numb etc, but it should help with the pain - but it is variable how much afaik

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