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Yes I have been described as a majotr pain in the neck but that's not the point.

I had a major neck disscection and chest flap in 2004 - and radiotherapy last year - and a biopsy at Christmas - all had their issues but this pain I am getting now is quite new and started a few weeks ago. It is building and shows no signs of going away in a hurry. I put it down to the weather initially but that doesn't seem to the cause as changs in the weather make no difference.
The pain is quite severe and keeps me awake at night. I am taking a lot of pain killers to keep going. It doesn't effect use of the arm - other than I am weak in that arm anyway and it makes me very wary of using it at all.

Could the mouth cancer have spread into the colarbone/ neck and chest? Or is it pain related to the surgery which has decided to crop up 6 years on?

I don;t know whether to see my GP or make a hospital appointment with my consultant. I get the feeling they will all say there is nothing can be done and it just the result of surgery/ radiotherapy - but why would it start now?

Any thoughts or similar experiences? I would love to hear from you.

Hope I am experiencing more pian than you are

Tony
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hi anthony
sorry to hear you are in pain and as dave has suggested it's a good idea to speak to the doctors,roughly about a year after i finished rt i had dreadful pain in my shoulder and my neck it went on for months and i could have cried with the pain.turned out it was after effects of rt,finally the right shoulder and neck pain cleared only to be followed by pain in the left side Roll Eyesbut eventually it went away.the after effects can go on for a few years i believe.i hope that is what the problem is with you and pain killers help.i used to take tramadol but they used to make me very nauseus and zombie like but they worked well on pain.lets us know how you get on.love shirl xxx
Hi Tony,

Sorry to hear about your pain. Chaz started having bad neck pain and headaches at Christmas - a year after radiotherapy ended. Consultant decided to do an MRI just to "dot the eye and cross the ts". Got the results yesterday - looks ok.

Late onset fibrosis is not unusual. However, I would call up an push for a scan just to reassure you. They should investigate new pain.

Best,
Cathy
Hi Antony, Well I am 9 years in remission now.
I have had a bad shoulder since the operation and it drops down.
I also had numbness in my ankles and pain specially at night.
I went over a two year period from Physo to Arthritus Consultant to Nurology.
Nurology suggested it was the radiotheraphy that had damaged my nerves in the spine and sent me for a Spinal Tap.
I was concerened abot this so went back to see my Cancer Consulatant.
He said its not unusual to get physical complicattion years down the line, Sugessted I have the Spinal Tap and await results on Monday when I go back.
In the meantime Urology sent me to physo and the guy was very good.
He said no bull shit your muscles in your shoulder are wanted and you will never be able to lift your right arm but i was not suprised at that but it dam akward being right handed and for instance if I can not reach something in the shop and also have tennis Elbow which is painful and feel like my arm is burning I just do without now as its too depressing to ask staff as the lok on their face when i speak makes me feel bad and they often cannot undestand a word I have said.
I also walk so slow now and my right foot goes inwards they came me a device to stop my foot dropping and going inwhen I walk but find this very strange and it feels very heavy.



I would go back to your consultant and I hope its the same senario for you.


Keep intouch


Paul
Hi CathyS

Ain't it fun? Keeps you on your toes! My pain varies considerably - last night was awful - just awful and even oromorph wouldn't shift it (lots of it) - but it's been much better - or is that lesser - today SO FAR! Still not seen consultant - that's next week but it will be the radiation that's causing it as people have pointed out. Good ole radiation! Still as I keep telling myself - better than the cancer! The pain can wear me down but it can;t kill me. Drive me nuts maybe! Neck, shoulder, arm - aching and uncomfortable and no where to put it that doesn't hurt. It's like trying to avoid Cheryl Cole in the papers!
All the best to everyone and I hope I am in more pain than you or yours.

Tony
Sorry to hear about your pain can't imagine how awful it must be but so pleased to see it can't keep a good man down, I love your sense of humour. Just think it will get worse, Cheryl will be replaced by total Gord & Dave during the next few weeks, that is of course if Cheryl doesnt put up for PM.

Keep it up (your sense of humour, not the pain)
Hi Tony,

I am having severe pain in left side of neck and left shoulder, pain spreads up to face and around left eye. Also have a sharp burning pain in left ear. Recently started to get constant noise in both ears as well.

This would be nearly 18 months after radiotherapy treatment. Pain has been around for over a year now but changing and more severe today. It looks like the nerves were damaged during the treatment.

Been trying different pain meds after consultation with pain management specialists. Separately have recently started acupuncture as well. Today I had an MRI scan to try and locate damaged nerves in neck.

So still taking morphine when pain is really bad but trying not to take to much. At the moment life seems to be doing the 3 P's

Pain management
Pill management
Poo management

Have not posted for few months now as this has caused me to take a major dip (depression) and I brought the shutters down. Thankfully moving out of that phase now. well fingers crossed.

Really good to see everyone on the site.

Keep going Tony, radiotherapy seems to cause many painful side affects.

Best wishes to you and everyone on the site.

Ken
Tony and Kenny sorry to hear about your pain, also sorry that I find it reassuring that Chaz is not alone and doesn't seem to be in as much pain as you ....at the moment.

Tony - keep us posted on what the consultant says. Most US patients seem to advocate physical therapy - noone has ever mentioned it to us here. Are you teaching? Must be very difficult if you are in so much pain and not sleeping.

Kenny I was reading through your old posts the other day as I remember how much pain you were in at the walk. I do hope that you continue to feel clouds are lifting. Do let us know if the MRI is useful.

If I was Chaz I would be demanding that his consultant takes him through the MRI in detail looking for possible sources of the pain. My own reading suggests it could be trigeminal neuralgia http://en.wikipedia.org/wiki/Trigeminal_neuralgia or something caused by pressure on the trigeminal nerve. Kenny - it certainly sounds as if that might be what you are battling with.

Sorry I am not up on Cheryl Cole, but lovely to see Angie chippin' in.

Best wishes to ya all.

Cath
Blimey Kenny, it is no wonder you have been depressed if you do have trigeminal neuralgia. The weather these last few months can't have helped. It must have been a very difficult time for you and your lovely family. Please send my regards to your wife.

Hopefully the MRI will help and perhaps there is something they can do to ease the pain.

Surely the sun must put its hat on soon to help lift the shutters???? I sure could do with some spirit lifting too.
Hi folks!
Well I'm being sent for an MRI scan so we shall see what that brings with it - scar tissue and radiotherapy equals pain that's what I think. Has anyone tried acupuncture for this kind of pain. It's quiote an unpleasant sickly kind of pain - discomforting more than agonising.
Just thought I'd keep you up to speed with my adventures. Got to wait for an appointment now and then wait for the results - porbably be another month before I know anymore - or have confirmed what I already know!

Here's hoping I am in moere pain than you and yours

Tony
Blimey - seems like quite a lot of similar problems and MRIing going on of quite a small sample of posters. Have your medical team told you much about fibrosis and late side effects. I can't believe how little info we have had from them here. But that may be because we are now back with ENT and don't get to see the oncology folks.

Whatever it was that was really bothering Chaz 10 days ago has disappeared - and he is left with the usual neck and shoulder aches and headaches. Saw his GP yesterday who discounted neuralgia as the source of recent pain but prescribed some tramadol in case it returns. That was always Chaz's going to bed drug of choice through treatment - seemed to really relax him and let him get some sleep. Not much use in the day, but it is night when he suffers most.

Look forward to your update Tony. Would be most interested to learn whether they can spot anything related to fibrosis that causes pain on MRI's. Feel Chaz went through the motions of having the scan without really knowing what they were looking for exactly. Were they just looking for cancer or were they also looking for other sources of pain? Doubt I will ever find out as I am not going to go to consultations any more and I doubt Chaz will ask or try to find out.

Best,
Cath
Pain is becoming unbearable and spread into my head where it is like an awful migraine. Still no scan organised. Rang the scan dept. at hospital but they have not yet made me an apopintment. Went to see GP as consultant not available and he has given me tramadol and damazipan and codeine - it helps me sleep but is not impacting the pain much. Having to take time off work now as I cannot function normally - well I've never been able to function normally even befor the cancer - that goes without saying - but this different.

I know I am just having a whinge - sorry but to paraphrase

a problem shared is a ... bloody nuisance for the person you are sharing it with

I hope I am in more pain than you are because if your's is worse you need lots of morphine!

All the best and I will report results of scan when I have them. It will be such a relief if they say it is not cancer. I know that will not end the pain but the worry is just adding to it.

Tony
Tony it is totally unacceptable that they have not made you an appointment for a scan yet - you posted nearly 10 days ago saying they were arranging one. Is there not a coordinator at the cancer centre - a nurse specialist - that can get on the case for you? If not I would get onto your local PALs or MacMillan and ask them to fix it for you. It must be awful being in such pain without explanation. Hope the drugs start working soon.
Cathy
Been back to the docs and the hospital head and neck pain nurse has spoken to me by ophobne so at least something is happening. Been told to take oromorph, paracetemol, ibroprufen and damazapam - hopefull that will control the pain. I just hope someone will eventually find a way of stopping it altogether - not sure I can live on this regime forever!
Love a good moan! Hope you are all well and coping. Best wishes to you all

Tony
Hi Tony,

I am glad you have someone batting for you. I think its awful to make you wait so long when you are obviously anxious. We usually get notification of scan appointments 3-5 days after a consultant decision and they always seem to try and get them in within the 2 week time frame which I presume is a target...

Hope the new drugs give you some relief, and that you get an appointment within the next week.

Best wishes,
Cath
Hi
Just to keep you all updated in my on going soap. I have never been in such pain and had 14 days in bed with painkillers that didn't touch it. Still not had my scan but was at the hopital today where the great Col. B sent me immediatelty for an x-ray and discovered one severely dislocated clavicle. This is not unusual apparently, but unusual to have this much pain. I am still awaiting the scan but he will try and move it forward. I now also have to see an orthopedic surgeon to see about putting the clavicle back. Still in great pain but he has given me new meds and if they don't work I go into hospital on Friday. I think they will (I took a bag with me today just in case yjhey wantyed to keep me in and would have been happuy to stay which gives you an idea how much pianI am in!)
Needless to say I hope I am in more pain thay you and yours

Tony.
Hi

Well I am signed off from work again and awaiting hospital boffins to figure out what to do with me - when they get around to it of course!

They tell me a dislocated clavicle is not uncommon afgter the op I had and happens quite a lot. Anyone else had it?

I waited four weeks for a scan - haven't had results yet. Waiting to see specialist orthapedic surgeon now. Meanwhile everything is agony - typing this hurts.

Managed to get a terrible cough on top of everything else and can't speak for coughing. Brain phased on pain killers.

What a life. Anyway I am hoping once they get their heads together they will sort me out quickly - may as well be optimistic!

Not up to do anything as a result of everything so I am literally a couch potato trying to remember to take medication! Mustn't grumble of course - just like a bit of a whinge!

Ii will let you know as things IMPROVE. As always I hope I am in more pain than you and yours

Tony

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