The List

[Good intentions]

quote Chaunce1234:

[USER=”2029″]Good intentions[/USER] by any chance did you report your case to the FDA as an adverse event?

https://www.fda.gov/MedicalDevices/P…/ucm317444.htm

I have been through that form but have not submitted one. I need to contact Dr. Billing and see if he filled out the Health Professional form. I know that he is aware of the FDA’s ability to accept reports and hoped/assumed that he reported mine but have not confirmed it.

I have everything I need to report it. Frankly, I don’t have much faith in the FDA, but will add to their database anyway, in case they get new leadership and get back to their mission. Here is a more direct link to the forms.

https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

[Chaunce1234]

[USER=”2029″]Good intentions[/USER] by any chance did you report your case to the FDA as an adverse event?

https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/HerniaSurgicalMesh/ucm317444.htm

[Lucky46]

quote Good intentions:

I had forgotten about this list. I’ve considered starting a new topic on my own recovery from mesh removal. Finally, a year later, it seems like the ordeal might actually be ending. More good days than bad. Less time managing the damage zone and more time doing normal life things. I’m actually planning for the future and acting on those plans now, unlike even just a few months ago when I would get distracted by new issues at the damage zone and go back to living day by day. Three years of mesh, one year of recovery from its removal. Four years since making the “smart” decision to avoid future problems with incarceration, and taking the advice of the surgeon who promised that I would be back in action, stronger than ever, after just a few weeks.

I still stay in touch with Dr. Peter Billing, who did the mesh removal. He has left the practice he cofounded, Eviva, and is starting a new practice. Apparently he wants more freedom to choose the type of surgery that he does. Eviva was primarily focused on weight loss surgery, and hernia repair and mesh removal were “side lines”, my impression from my experience overall with Eviva. He will be working in Seattle and Kirkland Washington. I’ll post his new contact information when it is available, which should be soon.

From what I’ve gathered over these years of collecting information, there are actually successful ways to use mesh for hernia repair, with no way to confirm which is which though. The surgeon has much freedom to try whatever they would like to try, as long as the patient survives the surgery. And the surgeon decides how involved they would like to be in the patient’s recovery. So it’s up to the individual surgeon to take responsibility for what they do. Not rely on the device makers’ advice.

Even though I can’t imagine having more mesh implanted in my own abdomen, because of the reaction I had to my TEP procedure with Bard Soft Mesh, it might be that Dr. Billing’s repair method is one of the good ones. I have not asked but I think that he stays in touch with his hernia repair patients also, so knows what works. He uses TAPP and a J&J mesh (now Ethicon) for his hernia repairs, as I understand things. I’ll try to get more details in the future.

This is a good list that we should keep updated. I am open to responding to any messages through the site.

Very happy to hear you are doing better.

[Good intentions]

I had forgotten about this list. I’ve considered starting a new topic on my own recovery from mesh removal. Finally, a year later, it seems like the ordeal might actually be ending. More good days than bad. Less time managing the damage zone and more time doing normal life things. I’m actually planning for the future and acting on those plans now, unlike even just a few months ago when I would get distracted by new issues at the damage zone and go back to living day by day. Three years of mesh, one year of recovery from its removal. Four years since making the “smart” decision to avoid future problems with incarceration, and taking the advice of the surgeon who promised that I would be back in action, stronger than ever, after just a few weeks.

I still stay in touch with Dr. Peter Billing, who did the mesh removal. He has left the practice he cofounded, Eviva, and is starting a new practice. Apparently he wants more freedom to choose the type of surgery that he does. Eviva was primarily focused on weight loss surgery, and hernia repair and mesh removal were “side lines”, my impression from my experience overall with Eviva. He will be working in Seattle and Kirkland Washington. I’ll post his new contact information when it is available, which should be soon.

From what I’ve gathered over these years of collecting information, there are actually successful ways to use mesh for hernia repair, with no way to confirm which is which though. The surgeon has much freedom to try whatever they would like to try, as long as the patient survives the surgery. And the surgeon decides how involved they would like to be in the patient’s recovery. So it’s up to the individual surgeon to take responsibility for what they do. Not rely on the device makers’ advice.

Even though I can’t imagine having more mesh implanted in my own abdomen, because of the reaction I had to my TEP procedure with Bard Soft Mesh, it might be that Dr. Billing’s repair method is one of the good ones. I have not asked but I think that he stays in touch with his hernia repair patients also, so knows what works. He uses TAPP and a J&J mesh (now Ethicon) for his hernia repairs, as I understand things. I’ll try to get more details in the future.

This is a good list that we should keep updated. I am open to responding to any messages through the site.

[Chaunce1234]

On a related note, there are likely lessons to be learned from the large groups of women who successfully organized against vaginal mesh and to raise awareness on that topic. It took them a lot of time, and they had to create a lot of noise, but they were effective in enacting change and getting the problem acknowledged. Perhaps a similar group of motivated men and women could organize around this topic of hernia complications and hernia mesh, using that same framework and model, and create some institutional change and awareness.

[Chaunce1234]

This is an interesting list and I suspect it could have value to other possible patients, since patient-to-patient communication is quite rare. If it’s possible to rename the title or re-post it with something a bit easier to find like “List of Mesh Removal Patients & Doctors” or something similar it may be easier to stumble upon by other patients both on these forums and on the broader internet.

Out of curiosity, are all of these patients for mesh removal only? Also, are the doctors in this list all primarily mesh removal doctors or do they also perform classic hernia tissue repairs?

It’s a big ask, but it could be helpful if some of these patients participated in this forum to share their specific experiences, their original condition, why they sought out removal and what their condition was at that time, experience and condition before and after surgeries, what follow-up surgeries were had if any, other treatments, and how they’re doing today. I’ve heard there are Facebook groups on this topic, but Facebook is a closed system and it’s not accessible to broader web search or to those not using that service.

Knowing that anyone is worse off after a surgery that is supposed to help is just horrible. I have tremendous sympathy for anyone who has chronic pain or a chronic health condition that has negatively impacted their life, hopefully something can be learned from these people and their cases. Serious health issues are obviously devastating to the patient and their existence, but also detrimental to that persons family, friends, children, livelihood, community, etc. All the more important for this issue to be figured out so that detrimental side effects can be avoided in the future.