Mesh removal and help others
Donation protected
I am trying to raise money to have a hernia mesh removal done. Since it was implanted, I have found out that it is a mesh (Physiomesh) that has been withdrawn from the market by Ethicon (Part of Johnson and Johnson group)
It has caused fatalities in the USA and linked with several in the UK.
I suffer from chronic pain 24/7. I have been fobbed off by the medical profession (As many of my fellow sufferers have) and sent to pain clinics for treatments that do not work.
The mesh inside me is 15cm X 15cm, it has been stitched all the way around, however, they managed to stitch in nerve endings, one of the characteristics of the mesh is that, after a short while, it starts to shink, as you can imagine, this pulls in the nerve endings, thus causing the stabbing like pains that i frequently get.
As a result of the pain, I lost my job as a business developement manager in 2016 and, haven't been able to work since then, I have had only lower level PIP to survive on.
I appeared on the VICTORIA DERBYSHIRE PROGRAMME this morning 26/09/2018 please see the link; https://www.bbc.co.uk/programmes/p06m5wvs
I did the show, so as to help the thousands of other people who are sitting in pain, not knowing why their lives have been ruined and they are feeling so alone.
I have recieved lots of support via facebook and I thank you all for that.
I want to be able to raise enough money to have this mesh removed, If I am fortunate enough to raise more than I need, I will give the overlap to the next deserving case. In an ideal world, I would like to set up a CHARITY to help other mesh sufferers.
A surgeon once said that if he removed my mesh, there is a 50% chance of me being in a worse state than I am now. Having seen DR Ulrike on the programme (She has performed 3,000 removals with only 2 patients reporting that they are not pain free) I would like to take my chances with her and get my life back!!!
Maybe then I can build myself up, fitter and stronger, to help others in a similar situation to myself now!!
The fellow mesh sufferers need to stick together to support each other, as you will see in many of my facebook messages, I have adopted a saying of; TOGETHER WE ARE STRONG, alone we are vulnerable.
Any help would be gratefully received, If I don't reach my target, I will either repay all donations or put it to other good use.
An Update,
DR Andreas Koch (In Germany) with the assistance of Robert Bendavid have said that they can remove the mesh, however, my abdominal wall will need to be rebuilt, the surgeon who put it in, placed it on the inside of my abdominal wall and, stitched it in, all the way around (Basically, upon removal, my abdominal wall will collapse) Both Dr Koch and Dr Bendavid are confident that they can do this.
Below, is a letter that i received from the royal college of surgeons!!! (Thanks NHS)
Dear Mr Ellis,
I am so sorry you have had such trouble with your abdominal wall hernia repair. Your experience is unusual but not totally unheard of and the solution will not I’m afraid, be easy.
There are a few surgeons who would be prepared to undertake this, and your GP might be able to direct you to someone suitable (I am assuming that the team who put it in are not able to help?). If you are not having success with a new GP referral, then do let us know.
The issues that would be relevant if you had another operation would possibly include:
1. The mesh might be impossible to remove completely.
2. The hernia would re-appear and so would need to be repaired in a different way. The chances of success would be significantly compromised because this would effectively be the third attempt to repair it.
3. The pain would remain, or even possibly get worse.
4. The size of the cut needed to remove the mesh in its entirety would be at least 25 cm long. I doubt attempting to remove it via a keyhole approach would be possible. Such a wound would take much longer to heal and would be susceptible to infection and breakdown (which might then lead to yet another hernia, but this time a much larger one).
5. The possibility that nerves have been entrapped within the mesh fibres, or attached to the ‘fixers’ used to secure the mesh, certainly exists. In removing the mesh (and the fixers used to secure it), the nerves would hopefully be freed, but there is no guarantee that this would resolve the pain.
6. All the usual complications of surgery and a general anaesthetic would also of course apply.
I wish you well as you try to get a resolution for your predicament and can only apologise again that your experience has been so fraught with problems.
Yours sincerely
Mr Nicholas Markham
RCS Council Member and Consultant Surgeon
Thank you for reading this epic.
David Ellis
It has caused fatalities in the USA and linked with several in the UK.
I suffer from chronic pain 24/7. I have been fobbed off by the medical profession (As many of my fellow sufferers have) and sent to pain clinics for treatments that do not work.
The mesh inside me is 15cm X 15cm, it has been stitched all the way around, however, they managed to stitch in nerve endings, one of the characteristics of the mesh is that, after a short while, it starts to shink, as you can imagine, this pulls in the nerve endings, thus causing the stabbing like pains that i frequently get.
As a result of the pain, I lost my job as a business developement manager in 2016 and, haven't been able to work since then, I have had only lower level PIP to survive on.
I appeared on the VICTORIA DERBYSHIRE PROGRAMME this morning 26/09/2018 please see the link; https://www.bbc.co.uk/programmes/p06m5wvs
I did the show, so as to help the thousands of other people who are sitting in pain, not knowing why their lives have been ruined and they are feeling so alone.
I have recieved lots of support via facebook and I thank you all for that.
I want to be able to raise enough money to have this mesh removed, If I am fortunate enough to raise more than I need, I will give the overlap to the next deserving case. In an ideal world, I would like to set up a CHARITY to help other mesh sufferers.
A surgeon once said that if he removed my mesh, there is a 50% chance of me being in a worse state than I am now. Having seen DR Ulrike on the programme (She has performed 3,000 removals with only 2 patients reporting that they are not pain free) I would like to take my chances with her and get my life back!!!
Maybe then I can build myself up, fitter and stronger, to help others in a similar situation to myself now!!
The fellow mesh sufferers need to stick together to support each other, as you will see in many of my facebook messages, I have adopted a saying of; TOGETHER WE ARE STRONG, alone we are vulnerable.
Any help would be gratefully received, If I don't reach my target, I will either repay all donations or put it to other good use.
An Update,
DR Andreas Koch (In Germany) with the assistance of Robert Bendavid have said that they can remove the mesh, however, my abdominal wall will need to be rebuilt, the surgeon who put it in, placed it on the inside of my abdominal wall and, stitched it in, all the way around (Basically, upon removal, my abdominal wall will collapse) Both Dr Koch and Dr Bendavid are confident that they can do this.
Below, is a letter that i received from the royal college of surgeons!!! (Thanks NHS)
Dear Mr Ellis,
I am so sorry you have had such trouble with your abdominal wall hernia repair. Your experience is unusual but not totally unheard of and the solution will not I’m afraid, be easy.
There are a few surgeons who would be prepared to undertake this, and your GP might be able to direct you to someone suitable (I am assuming that the team who put it in are not able to help?). If you are not having success with a new GP referral, then do let us know.
The issues that would be relevant if you had another operation would possibly include:
1. The mesh might be impossible to remove completely.
2. The hernia would re-appear and so would need to be repaired in a different way. The chances of success would be significantly compromised because this would effectively be the third attempt to repair it.
3. The pain would remain, or even possibly get worse.
4. The size of the cut needed to remove the mesh in its entirety would be at least 25 cm long. I doubt attempting to remove it via a keyhole approach would be possible. Such a wound would take much longer to heal and would be susceptible to infection and breakdown (which might then lead to yet another hernia, but this time a much larger one).
5. The possibility that nerves have been entrapped within the mesh fibres, or attached to the ‘fixers’ used to secure the mesh, certainly exists. In removing the mesh (and the fixers used to secure it), the nerves would hopefully be freed, but there is no guarantee that this would resolve the pain.
6. All the usual complications of surgery and a general anaesthetic would also of course apply.
I wish you well as you try to get a resolution for your predicament and can only apologise again that your experience has been so fraught with problems.
Yours sincerely
Mr Nicholas Markham
RCS Council Member and Consultant Surgeon
Thank you for reading this epic.
David Ellis
Organizer
David Ellis
Organizer
England
