Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

EPD - post operative pain

MachuPichu
Posted by

Hi,

my 51 years old mother was diagnosed with mesothelioma in July 2018 and had extended pleurectomy&decortication surgery in September. They managed to achieve MCR and they removed her 1 rib. 

After 10 month she still feels pain in the spot were goretex diaphragm was installed, although she can breathe normally. After visiting few doctors, they all said that post operative pain after such huge operation is normal is chronic, but it is still very painful after so much time. She cannot move fast, run or ride a bicycle. In case she lays down on the bad, she feels painless.

Does anyone that had same operation feels same? Do you suggest anything that could help her release pain? 

Please share your experiences and good luck to all suferers!

pottermouse
Posted by

Hi, my husband had the same operation last May and after several months of very low low pain it started to get worse I got a heated belt for him with batteries that I could recharge in the car but he also found lying down took away the pain, not sure what stage your mum is but would make sure she has a CT scan and look for immunotherapy treatment at professor Fennell clinic in Leicester, unfortunately my husband lost his fight with this dreadful disease on the 15th of May this year, but I wish you lots of luck with your mum

Barb 

Barb x
MachuPichu
Posted by

Hi Barb,

my mom was T3N0M0 and she had last scan 2 months ago and there was no sign of disease, actually 2 doctor were very pleased with the results and optimistic.

She also got therapy and thermal services (SPA) but practices were also limited because of the removed rib and so on.... interesting thing is, when she swims she feels no pain.

thanks 

  

pottermouse
Posted by

Hi again

Hubby was T2NOMO in November, but it showed signs of returning, He did get a lot of pain from the nerves growing back, and where they cut through the ribs, its a really major operation and its going to take a while for your mum to recover, it sounds like too much pressure while she's standing or sitting and swimming takes away all of that, maybe ask if there is any support that your mum could wear to help.

Do not give up being positive and try for everything there is going.

Good luck and lots of hugs I know how you feel.

Barb

Barb x
MachuPichu
Posted by

Hi,

how could disease returned back so quickly? They didn't remove all visible tumours? Can I ask you how old he was when he was diagnosed? 

thanks for you help and my condolences....

pottermouse
Posted by

Hi

Hubby was a really fit and active mountain biker and windsurfer, he was a joiner and kitchen fitter and was working right up until he was diagnosed in Feb 2018, he had x rays and ct scans that didn't show anything so went for a VATS op in Blackpool in the Feb they drained off over 6lt of fluid from his left chest/lung, and that's when they said Mesothelioma, I had never even heard of it, but they also said sorry nothing we can do for you its terminal. He was only 67 years old

We didn't take any notice from them and sorted out a surgeon in Leicester Mr Nakas who performed to operation, in May 2018 and he thought he had removed all signs of the cancer, the scan in August was clear and we went off to the Maldives on a Whale watching boat and he spent most days in the water snorkelling, but the November Scan showed signs T2 so he was put forward for Chemotherapy, this took a while to sort out, and the scan in January showed it was growing, The chemo didn't work and after only two sessions it was stopped. We went back to the Glenfield in Leicester and were reffered  to Professor Fennell with the  hope of Immunatherapy,  but he went down hill fast and didn't get a chance to enter the trial, we stayed positive the whole time and were hoping for a better outcome, it was not to be for him.

I hope this is of some help to you but if anything you should take from our experience is don't give up and don't take no from anyone

Love and hugs

Barb

Barb x
GerryC
Posted by

Hi MachuPichu,

I had the EPD op in Oct 2015 at Glenfield and I have experienced post operative pain ever since.  I am taking Pregabalin as a nerve pain suppressor which generally works well.  Not that I can't feel low level discomfort and pain in the right side of my chest and back all the time but have just learnt to live with it.  When the pain is particularly bad usually after I have done some heavier exercise I take further pain killers but this is not every day.  I do get a sharp pain from the diaphragm if I bend forward without taking care, it certainly is not as flexible as the natural muscle.

Hope this information is of use to you and your husband.

Best wishes,

GerryC

GerryC
Posted by

Sorry meant to say your 'mother' not your 'husband '. G

GerryC

MachuPichu
Posted by

Hello, 

thank you both for your answers and good luck!