I’ve been posting the below plea for help everywhere… on any public Facebook pages that will allow it and are related to health care, specifically GYN/URO. Maybe, some will respond rather than delete.
This is what I’ve been posting:
Hello. I am searching for doctors (GYNs, UROs, UROGYNs) experienced with FULL pelvic mesh removal (or as close to full as possible, rather than partial removals) that can help those suffering from severe mesh complications. Currently women are traveling far and wide (including myself who went from NY to CA) for full mesh removal because we only know of a couple expert surgeons willing and able to remove all the mesh, and not just do a “partial” or “trim”.
I’m also looking for doctors who do traditional pelvic repairs without mesh – either instead of using mesh in the first place for SUI or POP repairs, or to fix damages done after mesh complications/removal. Preferably doctors who no longer use mesh at all.
Women contact me frequently, and/or are in support groups looking for docs that can help them. Many are not able to travel, and simply desperate for help. That is why I’m posting this. Please, if you are a surgeon, or know of a practice, that can help with full mesh removal, and NON-mesh repairs, please let me know. Thank you.
I figure, best case scenario, we find more doctors that we can trust NOT to use mesh, and help for all those suffering from mesh complications. Worse case scenario, they delete my post and are annoyed because they do support mesh. If they do just delete my post? Well, it wouldn’t be the first time. I’ll get over it. Besides, maybe, just maybe they will at least pause to think twice about all this. (I can dream!?).
Let’s face it. Not everyone can go to Dr. Raz at UCLA. I love Dr. Raz, and I would recommend ANYONE go to him if at all possible. However, I also know he has a long waiting list, and can not possibly help everyone. Not everyone can travel to CA (although, I didn’t think I could either, but I did. So, never say never!). I also know that Dr. Raz used mesh in the past, but that he no longer does. The fact that he no longer implants mesh was a huge part of why I decided to travel all the way from NY ot CA to see him. I wanted a doctor that believed, as I do, that mesh is not a good thing, and who would not use more mesh to repair me. I also knew that Dr. Raz had extensive experience with FULL mesh removal and I heard so many good thing from other women that went to him.
Another doctor that seems to be getting very popular with women for FULL mesh removal, is Dr. Veronikis in St. Loius. I do not have personal experience with Dr. Veronikis, but have been hearing many good things, from many different women that have gone to him for mesh removal. There is no doubt that he is helping many people – and that is wonderful. My only concern with Dr. Veronikis, is the same concern I have about a lot of doctors – and that is that he also still implants mesh. I believe, he uses it a lot less these days, though, so that is at least a very good start. Also, at least he knows how to take it out if/when there is a problem, which is more than most doctors who implant mesh can say.
I do wish there were more doctors who did not use mesh at all, though. Maybe they never used it. Maybe they stopped using it. Either way would be good, especially if they were not afraid to voice their opinion to their peers that “mesh is not working”.
I find it difficult to understand why so many doctors still use mesh at this point in time with all the well known complications. ?? Especially the doctors that work with a lot of patients with mesh complications, and do full removals. If they see firsthand just how horrific and complex mesh complications are (from mesh used for POP as well as mesh slings/tapes for SUI, because it is both, as they should know) – then, how/why can they also still implant mesh regularly?
Some of the support groups for people suffering from mesh complications (listed on footer of this blog), and other blogs, websites, etc – have started lists with doctor recommendations. Many names come from individuals who felt these doctors helped them with their own mesh sagas. This is good, and I think it’s so important for people to share both good and bad experiences – but, you still have to be careful when selecting a doctor for mesh complications. I started to make my own list, but I do not want to reinvent any wheels, and replicate other people’s lists/work. So if anyone already has any lists or places I can link to, please let me know or mention in the comments on this post.
When I started looking at the few existing lists of recommended doctors, I realized that many of the doctors doing mesh removal, also still implant mesh. Now, this isn’t to say they haven’t also helped people – and, in the end, if you are suffering from mesh – that is what is important – getting real help! Everyone needs to way the pros and cons, and make their own decision on what doctor they feel most comfortable with. However, I hope people will consult with more than one doctor, since experience and opinions do vary so much.
One thing is for sure, there are simply are not enough doctors, in enough areas, that are both willing AND able to help those suffering from mesh complications. Specifically, there are not enough doctors who do who do FULL mesh removals, let alone those who do NOT use mesh at all. But, I know there are some, like Dr. Raz, and I would really like to find more. So, the search is on! I hope that when I do find some, I can feature them on my blog, and just have more resources to pick from for folks who are looking for help.
==============Related Mesh Me Not Blog Posts================
- Finding the Right Doctor for Surgical Mesh Complications
- Why I Went All the Way to UCLA for Mesh Removal Surgery
- Are you a GOOD mesh? Or a BAD mesh?
- Searching for Docs Experienced with FULL Mesh Removal, and/or NON-Mesh Repairs
- Partial vs. Full Mesh Removal Surgery
- Upstate NY Support for Mesh Complications
- Mesh-Injured People: NOT rare. NOT going away. NOT getting SUPPORT!
- It’s NOT enough. We need help!
- Were you told that you were the “only one”?
- FDA warns there is NO evidence that mesh provided any greater clinical benefit than non-mesh surgeries
- Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI
- Links to many other articles, blogs, support groups, and resources on the bottom of this blog