Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Pain and stomach swelling after RIG tube - anyone else experienced this?

Tricia24
Posted by

Just thought I’d post an update on what actually stopped my husbands spasms/hiccups, (in case anyone else needs help in the future). He was prescribed with Chlorpromazine which worked after a couple of days. So he is now spasm free thankfully. Good luck to all.

MikeO
Posted by

Good news Tricia, onwards and upwards!

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-oldfield.blogspot.co.uk/

chris2012
Posted by

Thanks for sharing this Tricia , its good to know that there are drugs out there that can help. All the best to you and your husband, take care.

                                                                 Chris x

Its sometimes not easy but its worth it !                Click here to find out more

Marieandian123
Posted by

Josie I was so relieved on seeing your post. I had my peg fitted last Wednesday. I was told I might have mild discomfort after it was done. 

Well if that was a joke it wasn't funny. I had terrible muscle spasms and could hardly breathe as they came thick and fast.Now I consider my pain threshold pretty high.But I was writhing in pain for 24 hours . The nurse finally realised and topped up my paracetamol with codeine. It was such a relief to be given some respite from the pain.

When I told the dr, her reply was"well you have to expect some pain" I could see she wasn't a bit sympathetic and I felt like nobody believed me. That really upset me and I cried, then I became angry. The nurses were lovely but that doctor was ignorant. So thankyou for telling your story, I could so relate to it. I'm at home now and I havnt had any severe episodes, thank god. But I won't forget that pain for a long time.

MikeO
Posted by

PEG/RIG tube pain is such a difficult one and seems to vary so much from patient to patient; think this is also somewhat down to the different "models" available. For me (putting aside the discomfort of having it fitted) my first night pain, as an in-patient, was minimal. However it turned out that I was a bit of a "guinea pig" because lots of people came to have a look at it in the short time I was there because it was a new type and I was only the second person to have one fitted; they said that many people (using the "old" type) needed morphine and a longer stay. When I came home I got complacent and didn't take suggested pain killers because it wasn't hurting and had a terrible time in the small hours in absolute agony.

Then when I had district nurses out to check and clean/do the balloon once a week they refused to believe what I'd been told, that the type I had didn't require "turning"; it took a long time for them to accept the fact. More recently I've found out that my hospital no longer use the model I had because although it was good, it was also very expensive so the powers that be put a stop to it.

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-oldfield.blogspot.co.uk/

chris2012
Posted by

Hello Marieandian , sorry that you encountered a lot of pain , I had the old type peg fitted ( not balloon ) when I had my first operation and did not have any pain , I think the difference between a peg and rig is the way they are fitted . I would strongly advise you to report this Dr to your consultant as the Dr should not treat you like this . I once had a stubborn drain tube in my neck and the nurse could not get it out so this Dr gave it a hard yank and it came out , I cried as I could not swear due to voicebox removal , the nurse comforted me and could see I was upset . The next day I saw my consultant on his daily visit so I reported this lady Dr who was severely reprimanded , Im afraid you do get these sort of Drs and sometimes nurses . I hope you are feeling better now . Take care .

                                                                                          Chris x

Its sometimes not easy but its worth it !                Click here to find out more

JosieFromGlastonbury

Hi Marieandian,

It is something far beyond mild discomfort, and I wish that one or two of these dismissive doctors could actually experience it for themselves ratherthan writing us off as histrionic.  I wish I'd pursued it further now, but you could indeed make a complaint about this doctor.  As far as I know, those of us who experience such a lot of pain are quite rare beings, and so she may not have come into contact with this consequence before, or not appreciated what she was seeing. 

That is no excuse for her trivialising your experience though - in another context this is now known as gaslighting, and is illegal!  She needs to understand that she has to listen to her patients, trust their descriptions and believe their words, because they are the only ones who actually know what they are experiencing.  It is not her job to cram everybody's experience into neat little boxes, and tell the patients that they are mistaken, lying, making it up or being over dramatic if they react differently to the way that she was taught that they might.

After that, any pain that the treatment brought was small in comparison, though longer lasting, so different.  I had a tonsillectomy before radiotherapy started, and afterwards I spoke with the surgeon who carried it out.  He was very miffed when I told him that the tonsillectomy was more painful than the radiotherapy, but on a straight scale of absolute pain, it really was - it was just over faster, thank goodness!

I'm glad that your pain has eased now, and really sorry that you experienced it at all.  I hope that the rest of the treatment goes more smoothly, and my suggestion is to keep ahead of the game and ask on here at every stage so you know the real truth about what to expect.

Best wishes,

Josie

Ron51
Posted by

Ok, I now have questions as I didn't get pain from my PEG and the first time they tried I was out with sedation and came round in a different room, the same with removal I was out of it, from reading on here it would appear that others are not sedated when they have them fitted and that there are different types of tubes that are fitted, an explanation would be useful as reading some of the comments on this thread I would be very worried about having one fitted and that to my mind is a bad thing as they can be a life saver. Just an aside my first attempt they couldn't get the thing in my mouth with a hole in the middle as I couldn't open my mouth enough to get it in because of my opturator (plate thing in front of my mouth) so they did it when I had the first opturator removed and a removable one put in (the first was fixed) and I was well out of it, this was about 3 weeks after OP and 6-8 weeks before radio.

Second is the pain with radio, is this to do with where the operation is as it got very uncomfortable for me but not painful, my OP was top of mouth and that wasn't radiated as they were happy with the margins and the radio was from the chin down.

JosieFromGlastonbury

Hi Ron,

As far as I can tell, the main difference is in how the tubes are inserted.  PEG tubes are put in place using a camera down a throat tube, while RIG tubes use X-rays to locate the right place, and a naso-gastric tube to put in barium or air, depending on the procedure.  From what I have read, both are usually done with the patient sedated but not out cold. 

Personally, I was completely conscious and could feel far too much, to the extent that when the surgeon made the incision I whipped my knees up to my chest, knocking all his tools on the floor, and refused to let him do anything else to me until I had been given more local anaesthetic.  I didn't realise until some weeks later that I am completely immune to opiate painkillers, so effectively I had been through the procedure with nothing more than a few jabs of local and a woozy head from the muscle relaxant element.

I know, from reading on here and elsewhere, that most people do indeed only experience a relatively small amount of discomfort or pain after having one of these tubes inserted.  However, there seem to be a small proportion who have much more pain, and because the doctors are not expecting it they dismiss it - if they haven't been taught that it can happen, in their world therefore it doesn't exist, no matter how much evidence they are shown to the contrary.

I was made to feel like a freak, a weakling, a cry-baby, an attention-seeker by the hospital staff when I was trying to deal with it.  If you read back through my posts on this thread, you will see that I am perfectly able to handle pain, having had two babies at home with no pain relief, but this was extreme.  All I wanted at the time was for someone, anyone, to validate my experience.  I wanted to know that I wasn't making it up, that this was more pain that I should have been experiencing, that the fact that I couldn't cope with it was not some defect on my part but because it was off the scale of what they were expecting to see.  I wanted to be believed, and I wanted to know that I was not alone. 

I am sorry if anyone is scared by this post; that was not my intention.  My intention is to inform, to reassure, to show that such an extreme reaction is unlikely but possible, and then if it does happen it is not so frightening and isolating an experience.  Nothing about this treatment is pleasant, and some bits can be downright awful.  Knowing that fact would have been very helpful for me, and would have meant that I could have spent less time trying to cope, firefighting the unexpected symptoms, worrying about whether it was supposed to feel like that, and more time making my life more comfortable in whatever way I could.

Best wishes,

Josie

madaboutmutts
Posted by

My husband is having a RIG fitted tomorrow on day 1 of radiotherapy and after reading some of the experiences we are both dreading it - he took a lot of persuading to have it done and is now wishing he hadn't.

Ron51
Posted by

I hope he doesn't get the pain but it is a must as at the end of radio he could well be hard pushed to do anything let alone eat. If the RIG can be a problem I don't see why the don't just fit PEGs though the daily turning can be a bit of a nuisance (was going to write pain then thought better of it) as I think someone said you don't have to turn them.

JosieFromGlastonbury

Hi madaboutmutts,

Please see the last paragraph of my previous post.  The tube is a life saver, and having it fitted is a case of balancing a few days of discomfort and maybe pain against weeks or months of not being able to eat properly or get enough food and energy inside your body.

When people say to me that I must have been very brave going through the cancer treatment, I don't think that is true at all - I did it because I had to.  If bravery came into it anywhere it was in submitting myself to all the procedures even when I knew they would cause me pain, but doing it anyway.  I had to have four teeth taken out together under local anaesthetic, whereas usually it would have been done under general.  That was bravery for me!

It might help to keep the bigger picture in mind.  Like I said before, it might be painful, but that pain will go within a few days and now if it happens at least you will both be prepared for it, not completely blindsided by it as I was.  The certain benefits far outweigh the possible problems.

Best wishes,

Josie

Marieandian123
Posted by

Thankyou Josie. Its such a relief to know someone else understands. I realise now I should have asked for pain relief sooner. But after being told that I would only have mild pain and discomfort, I didn't want to look histrionic. I really appreciate your kind words.

MikeO
Posted by

I've commented on this several times before but I'll throw in my experience and thoughts again; first one being I would go through with it again despite the discomfort and pain involved.

First "difficulty" is the insertion for which, as it was explained to me, you can't be sedated from the start as you need to use your swallow mechanism to get the NG tube into place. I found this very difficult but not everyone does; once the NG is in place they sedated me immediately and I don't really remember the rest of it though I certainly felt no pain.

The pain post insertion again varies from person to person; mine was awful on the second night but I'd gone to bed without taking enough (if any, can't remember now) pain killers so my fault really.

So I think if you're having it done you basically need to be prepared for some possible short term discomfort (minute or two) during fitting and then make sure they give you some proper pain killers to take home with you, then take some before bed even if it isn't hurting.

This won't cover everyone obviously and somebody posted in the last day or two that the docs had "forgotten" the sedation, which is not good. Hopefully it's a rough guide though; and I agree with Josie, they can be a life-saver, I used mine exclusively for 3/4 months and don't know what I'd have done without it.

 What is a Community Champion?

Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

http://mike-oldfield.blogspot.co.uk/

madaboutmutts
Posted by

Thank you. We know its essential but I think he is dreading it more than the radiotherapy.  He has had a rough ride as had 5 teeth extracted pre radio and got a dry socket which has been very painful.  He also had a major rta in December when he had every bone in his face broken and 3 haemhorrhages in his brain.  He was in hospital for 7 weeks but made an amazing recovery until the cancer appeared in April ( I feel the trauma if the accident precipitated this).  A trailer shed its load and a breeze block came through our windscreen hitting him full in the face, so as you can see the last 7 months have been hard - the RIG just seems to be the last straw!

We are under Southampton which is a 100 mile round trip every day - but they saved his life before and we have a lot of faith in the hospital.  They dont use PEGs there for head and neck cancers apparently.  Anyway, onwards and upwards!

B