Neuropathic pain post modified Whipples

[angelinamacc]

Hi All

My 78 year old mum had a modified Whipples 2years ago for a PC. Unusually the histology showed the cancer to be squamous cell. She has made a fantastic recovery and is not on insulin just enzymes. She has put all the lost weight back on. The only problem we now have is muscular / nerve pain at the site of the surgery which really gets her down. She cannot take non steroidals. Can anyone suggest any thing which may help? I realise, as does she, how lucky she has been thus far when I read every ones stories and how other people have suffered with this terrible disease.

Thanks

AM

[claude]

hi my mum had her whipples 3 years ago and suffered exactly the same nerve pain.She was eventually refered to the pain clinic at XX hospital where she had her op. They gave her injections in her stomach at the site of the scar.The injections deadened the nerves.They were quite painful to have at the time and she had 3 lots over a few weeks. She has not had the pain once since then. I don't know if this helps but it really worked for her .

Good luck

Claude x

[angelinamacc]

Hi Claude

thanks for your reply, that is really helpful, my mum also had her operation at XX , Mr XXdid it. She has an appointment with the chronic pain clinic locally but I was really interested to hear about the injections your mum has had, we will look into it for mum. I am sure that the pain clinic will only give her stronger pain killers and she's not good with morphine based drugs. I will let you know how we get on as it really is a pain!

Angie

[claude]

hi Angie

Mr Sherlock did mums op too he's a genius! Mum thougght the same about the pain clinic she thought that they would just give her more drugs which she didn't want.She like your mother doesn't do well on the morphine based stuff she gets confused and they basically knock her out.I'm sorry that i don't know the exact name of the injections that they gave her just that they were nerve blocking injections.I do feel for your mum the pain for my mum was difficult to bear. Otherwise is your mum well now?I hope so.

claude x

[angelinamacc]

Hi Claude

Yes thanks mum is well now other than the pain which gets her down, all her scans are clear apart from a few lymph nodes on the omentum which have not changed in size on subsequent scans. Also she has no pain on eating or much digestive problems. I saw your posting 'up date on Mum' and do hope you enjoy the visit to Spain.

How old is your mum?

Angie

[claude]

hi angie. really glad your mum is well hope you can get this pain thing sorted.

My mum is 68 and had 3 brilliant years after her whipples she was just unlucky that it came back.In this time she had 4 new grand children,travelled a bit and was just generally in great health all she had to do was remember to take the creon.She tells all the kids in the family that she was bit by a shark thats why she has the big scar they're really impressed.

I feel miles better than i did when i first posted it was a bad week and sometimes your just so frustrated that you can't help more.Things are calmer now and i feel a bit further away from the nervous breakdown that constantly threatens my life at the moment.lol

If we ever get on the plane Spain should be a great break for us all.Mums really looking forward to it.Keep us posted on your mum.

Claude

[angelinamacc]

Hi Claude

I really hope you get to Spain and have a great time. My Mums pain remains about the same, and I am going to try to get her scan date brought forward in case it isn't just nerve pain. I do worry a bit in case a recurrence has occured and that is causing the pain. Well you know what it's like, I'm sure, you don't know what to think, when you are optimistic you wonder if you're not facing reality and then when you are worried you think you are being maudling!

My mum lives alone and copes really well at the moment as I work full time and although I try to go every day she still looks a bit forlorn sometimes, which upsets me. My sister is really good but she lives 30 miles away and also has a full time job.

You sound as though you are really strong for everyone else, and doing a great job, but I know how you feel when sometimes it all gets on top of you and you have to have a little flaky moment!

Have a lovley hol.

Angie

[angelinamacc]

Hi All

Just thought I would update on Mums pain problem. We eventually got an appointment at the chronic pain clinic last Friday.

The doctor was lovley and we came out with a prescription for Fentanyl patches which is about as far as we can go as they are opiates.

I was a little worried that they may make her feel sick and dizzy but they have not so far.

Yesterday morning when they would have taken effect I rang her and got no answer, so I jumped in the car, really worried in case she was ill only to find that she had been off out gallavanting with her friend purchasing sausages and cheese! Not a care in the world, charming!

Anyway, fingers crossed she stays well and that the results of the scan in September are ok.

I have not heard how Claude's trip to Spain went and how things are with you and yours.

Angie