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:
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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.
https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/
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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.
Thank you!
==============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
Mesh Me Not 
I guess I just don’t need to waste anymore time being sent to unnecessary doctors. This has been going on since 2010. I have been working to get this body as strong as possible because most of us know very well what unending pain does to the mind, body and spirit. Yes, there have been many times I have no longer wanted to be in this body; however, that doesn’t address the issue or correct the problem the best I can with the Right Surgeon. I just need to be able to stay focused long enough to see this to the so called end because if I give up that helps NO one not even myself.
I want to thank you in advance for all your time and hard work!!!! I know you have cried many tears not just for yourself but for all of us walking the same path. Or at least walking the best we can these days.
Oh! a new comment from a doctor I saw. My while blood count has been especially since this surgery and now I am being told that some people just run high. I don’t accept that!!!!! To me it means something is going on even if the doctors over look the cause. Also, I guess I have been in shock a little the last few months after I was told by the surgeon and my PC that if this is the problem that nothing can be done.
Tomorrow I will call the office of Dr. Raz and at least have a few questions answered. That way I will feel I at least took my first step in his direction. Please keep praying, asking, calling and whatever it takes for more doctors to come forward and help these crying souls.
Bless You All!!
Joy
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Oops! My white blood count has been over 1,400.00
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May I ask what are the ages of the ladies that have had the mesh removed because I am now sixty.
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Hi Joy. I was 46 when I had the mesh removal surgery… but, there women from in thier 20’s and right on up to the very elderly dealing with this. Do you use facebook? There are support groups in there, that you may find beneficial… closed groups to only members where women can talk a little more freely. This is one you might be interested in:
Women’s POP/SUI TVMesh Complications Support (Closed Group)
https://www.facebook.com/groups/317477065098820/
There are many women of all ages in that group, traveling from all over, to try to get full mesh removal. If you don’t have facebook – you may find more information and stories aon the other sites I list below, like MDND (http://meshmedicaldevicenewsdesk.com/), and http://meshangelnetwork.com/.
I really hope you can find a way to get to Dr. Raz or Dr. V. It’s not easy, but well worthwhile. Take care.
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I went to Dr Christopher Walker in Orlando Florida to talk about mesh removal. I had surgery in Dec 2014 by a different Dr, After the surgery done by a different Dr I am not able to have sex. I have several other complications. Although I haven’t had surgery yet, I’m very confident in his ability to perform the mesh removal surgery successfully.
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I saw Dr. Walker in January 2016 I felt like it was not upfront…. I was under the impression he took my insurance come to find out a ” Funder ” is involved they get you$$$ when you settle with interest. I opted to not have him do my removal, still trying to find someone . He said he could do it in his office, I didnt think so…
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Thank you for sharing this Siri. I agree this sounds a bit shady. Too many women have been screwed over by these lending/funding companies. Many wind up owing more $ than they will ever get in a lawsuit. So hard to know what is best. Did you find anyone else?
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I researched Dr. Walker, and called his office regarding graft repair after mesh removal. His rep. said that insurance is not accepted. What they want are people involved in mesh claims and settlements, to leech onto some of that money. That means, yes, you can have a great hotel, etc, but, it will come out of your settlement. Plus, you will have a delayed disbursement, as all liens, fees from outside sources are withdrawn before you will receive your money. This office is not the honest, great
doctor persona that is advertised.
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Wouldn’t it be interesting to contact medical schools to see if they are even teaching new docs to treat mesh complications? And to remove mesh? If the med schools are pretending like the problem doesn’t exist that would be most revealing. I’m guessing a lot of med schools get grants from big pharma. They would probably be cutting off the gravy train by admitting mesh is a problem. It sure would be interesting to find out. State schools are subject to public disclosure so they would have ro reveal the truth. The private schools can circumvent rhe truth.
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Mary – That would be interesting. I am inclined to believe that many of the younger, and newer docs are NOT being trained on Non-Mesh repairs – simply because it’s so hard to find them. Many women have found better luck going to doctors that were older and who were doing repairs well before the use of mesh was so prevalent. Your points are very interesting into the “whys” of that. ? Using more and more mesh in the name of “research” seems like a big deal indeed. It was a huge part of why Scottland recently banned, and then planned to un-do that ban (https://meshmenot.wordpress.com/2015/01/04/former-snp-health-secretary-alex-neil-accused-of-lying-over-suspension-of-mesh-implant-surgery/)….
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There is a doctor in Louisville, Ky who does not believe in mesh. Her name is Dr. Susan Tate. She says she has done complete mesh removal.
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Linda, I’m having trouble finding a practice website with info on this doctor. If you have any more info, please send.
I do know there was a Dr. Susan Tate mentioned in an article on MDMD (http://meshmedicaldevicenewsdesk.com/christine-scott-bard-5-5-million-loss-at-trial-survives-appeal), which said;
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Background
Christine Scott (CS) was implanted with a Bard Avaulta mesh kit by her gynecologist Dr. Tillaikaransi Kannappan who had received a one day training lab on the Avaulta taught by Susan Tate, a urogynecologist. The training consisted or a powerpoint presentation and a cadaver lab.”
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Is that the same doctor? If yes, it certainly looks like she use to train others in using mesh. If would be very nice if she no longer believed in the use of mesh, nor used it. ?
~ Deb
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Doctor should be respected and pay according to their ability to treat not to cut. Why the mesh has to be priced so high? is it very complicated to make it or to risky for patient? So high potential of being sued should be the reason for the high price.
Pelvic floor descend during defecation even in normal person.
UI and POP are due to weaken pelvic floor support. Mesh is reconstructed the support. Pelvic floor descend during defecation overload artificial nonstretchable artificial support. The mesh doesn’t fail but the tissue it hold will ultimately give way. A supplememntary support should help. https://www.youtube.com/watch?v=ViDZcDF-aP0
When your operated knee give problem, a crutches would help. The same logic aply here.
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Heng Hai – It is obvious you did not read the post you are responding to, or any of the data on mesh complications linked to from this blog.
The doctors are not the ones being sued. The mesh MANUFACTURERS are. This is because the mesh itself is a poor product, made of polypropylene plastic, and is being misrepresented and marketed. The mesh products themselves are NOT priced high, and are VERY easy for doctors to put IN. This is why so many doctors are using mesh. Mesh REMOVAL, on the other hand, is complicated and difficult, if not impossible. The damages the mesh causes are often permanent.
The problems are not from the mesh products “failing” in the sense that they “ultimately give way” as you suggest, but rather the mesh products themselves are causing the problems. Mesh is NOT inert. It hardens, and then the mesh itself starts to cut and “erode” through tissues, organs, whatever. Your product, which you are obviously just trying to promote here, would NOT help or stop the mesh complications at all.
Your analogy of a crutch helping support an operated knee is nothing like mesh. Unless, the crutch somehow morphs into something that has sharp blades all over it and starts mutilating the patient using it…???
For more information, including links to the FDA and medical articles on mesh, please see my the post” Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI” (https://meshmenot.wordpress.com/2013/04/19/top-10-things-to-know-about-mesh-before-surgery-for-pop-sui/)
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thank you again… would it count if the doctor told your family “I GOT IT ALL”, so they too are thinking this is GREAT, she’s gonna be better!!, I KNEW as soon as i woke up from surgery i was not right.. my family are still thinking he GOT IT ALL…UNTIL I got my records from my surgery… there it was.. “i was able to clip the VISIBLE MESH flush with the bladder wall”… WHY?? would he tell me and my family he got it all!! OH MY GOSH! I’m so angry! so mad at myself for having it put in, So mad that i didn’t research him!! He is A LIAR.. I believed him, only because he was a a so called preferred provider for mesh removal… some group he said he was with. damn I was so dumb(sorry for bad word) check him out if you have time.. Dr. Jeffrey Dell, knoxville tn. I have found very little. I do know the 1st time i went to him, he told me, “he had a lady that filled out all the paper work for reimbursement,he was nice then. I just wasn’t sure about all that, i told him i needed to think about it, i had no idea what was going on… ALL I wanted was to feel better and have my life back.. so i went back, he acted totally different, he didn’t mention me seeing the lady, but i did, he told me real quick, i missed the deadline??
I still want my life back.. I want to be pain free.. Thats exactly what i want. that is the most important thing to me.. and to be able to let anyone thinking of getting a bladder sling to NOT DO IT…
sorry i ramble and just here and there.
wish me luck with dr raz on tuesday.. i just wish i could see him tues and have surgery as soon as possible.. i would stay there if he could do it next week. right now i fly back thursday..
does dr raz do that? like i have my consult tuesday, if he thinks i need surgery how quick can i have it done? do you know?
thank you
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I hear ya Beth. =( I’m so sorry. Your story is so similar to so many others. So many docs telling people “they got it all”, or “they got all that was necessary”, or “all they could get without causing more damage”. They the woman gets to Dr. Raz, or Dr. V, and they find there was hardly any mesh removed at all.
I do wish you the best of luck Tuesday. Unfortunately, I had to wait 5 months between my consult and surgery – and I think that is fairly common with Dr. Raz. I know some who could not wait, went to one of his colleagues – you could ask him about that. I know many others are going to Dr. V in St Louis also, who has a shorter wait time. I personally do not know how their skills are compared to Dr. Raz, but I have heard good things about him.
For details on my trip to UCLA – in case you didn’t already see them – please see: https://www.facebook.com/media/set/?set=a.304027056398512.1073741830.299505896850628&type=3
and this blog from Linda K was really helpful to me:
http://meshangelnetwork.com/2012/06/mesh-dr-raz-u-c-l-a/
Please let me know how you make out! Feel free to private message me on FB too… =)
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hi, i just got back home from my appt with Dr.Raz… He was wonderful… most of all he and Dr. Mellano believed ME!! they had no doubt it was the mesh.. the 1st thing Dr.Mellano said when she walked in the room, (i was standing leaning on the counter because its so painful to sit),she said Bless your heart.. you have been through so much.. she examined me, very painful, she could feel the mesh, she asked lots of questions.. she listened, she never interrupted me, that was so nice, i couldn’t help but cry.. she told me she would be right back with Dr. Raz, he came in, i felt like i was meeting a super star, and i truly believe he’s gonna be my SUPER STAR.. He asked several questions, he listened, he examined me, he said i was in a mess of infection, and that all of the mesh and anchor needed to be removed, he needed to rebuild my bladder, rebuild my urethra, he told me he could help me, i would be infection and pain free, i would get my life back…
SOMEHOW,SOMEWAY, WOMEN PLEASE PLEASE DO NOT HAVE ANY REVISION SURGERY UNLESS YOU ARE SURE THE DOCTOR CAN REMOVE THE ENTIRE MESH,ARMS, ANCHORS….my previous surgeries really hurt me, Dr.RAZ told me this.. several times..
I am heartbroken to type that i can’t have surgery till May 11… I balled my eyes out, so bad that he came out and tried to console me, he told me he was very busy, trying to teach other dr’s to do what he is doing, he said he wouldn’t be here forever(that scares me sorry type that, but I’m honest) I know other women need him just i like do, i just wanted it sooner so bad.. he told me to not cry, not look at the past, but look to future of being pain and infection free..and try to be patient. I am really trying.. its just hard, and I’m still crying off n on.. i want to feel good. i want to work.. i love to work, i want to be active. I WANT TO BE HAPPY.. being in the bed is NOT FOR ME.. THIS MINIARC SLING IS HELL.. pure evil..
I was so tore up in the room, dr raz asked if i had any questions, i think i had a few. but i really don’t remember , so i emailed him some questions, 5 questions, i didn’t want to take up more time.. my recovery should be 6-8 weeks, my surgery hopefully will last 2-3hrs, mostly likely need to stay their at the tiverton house 8-10 days total, i would spend the night in the hospital after my surgery, i will need a catheter for 6weeks, and he wants me to come back there so he can remove it. i think thats about it.
I am on his cancellation list along with a lot of women..i plan on calling every other day, i called today, but no luck.. i am fortunate to have good insurance, insurance that he accepts, i paid my $35 copay yesterday, and then i pay 10% of surgery.
Linda K her blog meshangelnetwork has helped me a ton! I’m thankful for her.. and I’m thankful to you Deb, reading your posts have helped me too! You women are special… THANK YOU VERY MUCH.
im not on fb, used to be, but i quit, it didn’t help me, sorry to say i would just get upset reading how happy everybody was.. shame on me.. i’m selfish right now, I’m angry right now, i just need to stay in my little hole..
thank you again deb. i will let you know if i get a sooner date.
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My doctor who put mine in also took it out he’s been my doctor forever he was reluctant to start using the mesh and I was one of the few he did but he’s in a group and he removes all of his fellow group members patients that need removal since becoming aware of all these issues he’s now also added urology to his practice he’s an ob/gyn urologist he’s in alabaster Alabama dr.james head
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Tammy,
Would you mined telling me how long yours was in before Dr. James did the removal surgery? How long has it been since you had the last surgery and did he do a total mesh removal. There are so many questions I would love to ask you. Since mine has been just over four years it has become part of my own tissue. Like many other ladies the pain has worn this body down to a point of not knowing if I could handle going through another surgery. However, I also feel if I don’t have something done soon I won’t be around much longer anyway.
I do have an appointment on April 7, 2015 to see Dr. Raz; however, since I live in Ms the trip to Ca I feel would be too much on me since just going to the coast almost gets the best of me and it is only two hours away.
Dr. James would be a dream come true that is if he is just as good as Dr. Raz because I can wrap my mind around having to travel four hours instead of across the country.
I thank you in advance for your time and understanding with this issue that should have never happened as you well know.
Joy…..ce
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Hi Joy without going back to my files I have on all of it I think it was 18 months but I will look that up for sure and post it later ,I had 2 different procedures before the full removal that were removing pieces that had came apart and was causing my husband issues as well ,I hope you do find help as it will be such a relief getting it out but the pain sometimes remains .i have developed lymphedema from the waist down in both legs and feet it has not been said nor proven it was from all this with the mesh but I totally feel like it is . I am looking for others this has happen to as well ,as if I did not have enough health issues already ,I had to develope this as well I wish I could go to this ca doctor too just to make sure all is as good as it should be and to see if he can prove or thinks my lymphedema is from the mesh .Wishing you a speedy and uncomplicated removal take care .
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Oh and it’s been 4 yrs since he removed it and yes took all of it out
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Tammy,
Thank you for responding so fast!! Do you remember if there was a problem with your white blood count after the mesh was implanted? Mine is continuing to climb. My PC seems afraid of me having the mesh removed. However, I am afraid if I don’t I feel I won’t be around for very long. I am working on staying as positive as I can to take the right steps to have all the mesh removed; however, the thought of another surgery makes my body tremble.
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Why didn’t your doctor take all the mesh out the first time?
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Tammy – Thanks again for sharing. If you are looking for others, you may want to try some of the online FB mesh support groups – like: https://www.facebook.com/groups/317477065098820/
You may also find this article interesting: http://meshproblems.weebly.com/linking-the-research-from-fbr-to-implant-materials-to-autoimmune-disease-initiation-or-exacerbation.html
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Tammy I live in the Panhandle of FL, could you provide the complete Name, address, and phone number to the above Doctor. Thanks
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Renee – I know its’ been a few years since your post, but I am hoping this finds you somehow. I also live in the Panhandle of Florida and I am looking for a “full mesh removal” doctor and wonder if you had any luck? I am would also love to know who did your initial surgery – wondering if it’s the same one who lied to me….. Thanks !
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Kim Nation
in the last week
Dr.z was my doctor he did a hysterectomy on me 5-28-02. I was admitted in Shelby hospital on 8-24/05 with complications from ovarian cysts, Dr.head was on call and said he would be doing my exploratory surgery, he said he removed fluid in my abdomen and remove scar adhesions off of my colon and ovaries , I was admitted again 11-17-2012 for the same thing, dr. Head did surgery for ovarian cysts, and said he removed tons of scar adhesions from my colon and ovaries and he said he put mesh over my colon and ovaries to keep adhesions from attaching. On 5-28-2013 I was admitted again with ovarian cysts and scar adhesions problems dr. Head said he didn’t want to do surgery because it would make more adhesions, I asked him to explain to me what kind of mesh he used in me in the last surgery. He would not discuss it. I was in ER this past Thursday, was diagnosed again with scar adhesions problems. I called Dr.heads office, I have never been treated so rudely the receptionist told me she could not have a nurse call me because I was banned and flagged, when I asked what that meant she told me I was discharged because Dr. Head said there was nothing he could do for me. Dr. Head never told me in the hospital that he would not see me again. I have never in my life been treated in this manner. I explained to the receptionist that Dr.z was my real doctor that I couldn’t help Dr. Head was on call and did my surgeries. I think it is un ethical of Dr. Head and his staff to treat patients in this way, and it is a patients right to know what is put in their body on their organs during surgery. I would never recommend Dr.head to anyone. I have been reading numerous reviews and find I am not the only patient with the same complaints on him and his staff.
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Tammy – is this the doctor you are talking about??:
http://www.shelbyobgyn.com/Provider-Profiles/Dr.-James-Head.aspx
If yes – so, you are saying he removed all the mesh? And you are happy with his work, 4 year’s post-op, correct? Good to know. Thanks.
You ladies may want to join the Mesh Problems Group, or other online FB Support groups to meet more people dealing with mesh complications. Check the links down in the footer of my main page!
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Yes it is
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Update upon futher investigation I do have some left in ,I ended up not having lymphedema ,why I was told it was all taken out and then find it hasn’t been has me questioning him as my doctor I hate that I was misinformed and therefore passed on wrong data to the rest of you ,but was going on what I knew at the time and I had stated it was in 18 months it was only in 10 months before I started having complications and ended up taking as much as he could out so ,,still searching for a doctor to remove what’s left in there and help with all that’s going on due to the mesh ,,have been in contact with DrRaz office but can’t fly ,so have attempted to contact DrV 3 times with no reply so back to square one ,,sort for all the misinformation
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Tammy – thank yo for the follow up. I’m so sorry, though, that you are going through all this. SOOOO many women have had this happen – told that they removed all the mesh,
In some cases – perhaps the doctors truly believe they did remove all the mesh, but then missed a small piece. I can see that happening, since the mesh is truly so hard to remove. However, SO many women have reported that their doctor told them they removed ALL the mesh, and then the women find later that they did not remove hardly any. In many cases, they never had any intention of trying to remove the mesh in the groin area, etc. Many others found the doctor simply snipped part of the mesh that was visibly eroding into vaginal wall, and/or they cut it to “relieve the tension”. This is NOT removing the mesh. Yet, they tell the patient it is removed. ?!
This makes me wonder if doctors don’t just tell patients with mesh complications what they think we want to hear sometimes – hoping it’s all in our heads and that if we believe the mesh is out, we will stop complaining about it. Which is, of course, insulting.
Not only is it insulting, but it is also dangerous for us because it just prolongs and complicates our health issues. Sending us on wild goose chases, and treating a myriad of problems that keep getting worse, rather than dealing with the root of the problem. Plus, doctors that specialize in mesh complications have stated that the longer the mesh is in, and the more partials that are done – the more difficult it is to find and remove the remaining mesh if/when there are problems. I wrote about this here as well: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/
I hope you were able to get through to Dr. V. Hang in there!
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Hello again just got some more information I have been working with another team of doctors who compiled all of my medical records for thei last 5 yrs everything I have going on with me is from mesh ,I am still upset at being told it was all removed when the anchors and possibly some still embedded in tissue was not ,I hope if any of you have it removed ask for them to save the stuff they take out and then get a copy of your procedure report ,your surgery report has everything in it they done thus giving you the true answer if it was all removed you have a right to is copy of your records never let anyone tell you different ,,the reason I say keep the mesh that’s removed is if you have a case pending that will be helpful . I have not got any response from dr V either by phone nor email I feel if a dr can’t reply when he clearly states he or his staff will get back with you within 24 hours then don’t ,,it’s been almost 2 months of trying and I fell if they can’t hold up their word then not sure I trust him im so scared of having this portion removed I really want a trust worthy doctor . Still looking was given some names by the doctors who did my diagnosis based on my records but not seen one I feel drawn to go see yet ,I look every doctor up on various sites credintuals ,reviews ect are a good tool to go by ,,hoping one day all of our nightmares will end I tell every one I know do not do mesh ever
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Hi I’m new to this group but wanted to ask you, why can’t you fly to CA. I’ve been reading all this and trying to mentally think of a way to help you get there. Iam fixing to call Dr Raz myself to see about a consult. I had a partial 2 months after implant due to erosion. I like you could in NO WAY ride that far but wondered about flying and if you couldn’t do it in one flight break it up where you could rest over night before flying on there. Just trying to help.
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I can not afford it ,and upon checking into it my insurance would cover 100% of the hospital and doctor but I would have to stay out there 3-6 weeks or risk it and fly back n forth which could cause problems with the surgery you have follow up visits after the surgery ,,when you arrive you can see the doctor get a game plan so to speak then in the next day or so have the surgery stay over night but once released you would need to stay for a 3 week check up and barring any complications might get released then but most want a 6 week follow up as well I can’t afford the flight ticket not to mention a place to stay food and any other expenses
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I stayed for about a week… Long enough to make sure they could remove the catheter because i did not want to fly with it, and didn’t really have a doc at home to go to for it’s removal, etc. I only went back for a follow-up a few months later because I had questions and some further issues. Many women only stay a few days… and even fly with the catheter… and have their local doc remove it, etc. It all depends on what kind of support you have back home.. and, you own particular medical issues. Please see this photo album in FB for more on my trips there:
http://www.facebook.com/MeshMeNot/photos/?tab=album&album_id=304027056398512
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Tammy, I called Dr. Veronikis office during business hours and got an appointment right away. I am having full mesh removal surgery in December.
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Hi Deb, well I went to Dr V, as u call him, he started putting the mesh in me back in 2008, 2009 and 2010. Well I have excruciating pain, I go to all these different docs and finally, 1 real nice Urologist/gyn says to me, after testing me a lot 1st and trying to help me. She says, ” Dr V put in your mesh, he should take it out!” Well, he did take 1 out in 2008 and took 1 out in 2009 and I made an appt with him recently and he was really mean and disrespectful to me. He says he will not take it out because its TOO DANGEROUS! So now, who do I go to? I believe I was a guinea pig, he practiced on me and now he has supposedly sooo good to everyone else but not his own patient that was always very nice to him. 😦
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Pam, I’m so sorry to hear this. I knew Dr. V still used mesh, and several years ago, Dr. Raz also used mesh. But, Dr. Raz stopped using it, and no long advocates for the use of it. This was one of the reasons Iike Dr. Raz and wend to him myself. I have never been to Dr. V, but heard do many others signing his praises, that he has become a ‘go to” doctors as well for many suffering from mesh complications. I’m very surprised and saddened to hear that he will not help you now – especially if/when he put the mesh in. =(
Is there any way you could get to Dr. Raz for another opinion? Since he often takes out mesh that other doctos say is “too dangerous”, or “impossible”. I suppose, in some cases, it really is not possible…. and that is another sad truth. I would want to hear it from an expert who I trusted, though.
I feel like we have all been guinea pigs =(
Are you in any of the support groups? You may want to get feedback there as well. I’m sorry this blog doesn’t get that much traffic, and even I have been slow to respond lately as I’m dealing with my own recent surgery and recovery..
This has a list of other resources: https://www.facebook.com/notes/mesh-me-not/links-to-resources-support-groups-and-information-regarding-surgical-mesh-compli/299518930182658 .
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My sister is suffering from EVT sling surgery. At this point she is in desperate need of help! I listen to her crying on the phone as she doesn’t know who to trust anymore. She doesn’t know where to turn. She doesn’t want to live like this any longer. I wish I knew more about this surgery and why it is even done. Apparently recent doctor told her they can TRY to remove it but it’s now a part of her. She is in so much pain and cannot do or go anywhere except to doc appts. Can you possibly give any advice or direction to help her?
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Rici – She needs to get to one of the few doctors that actually specialize in mesh complications, and CAN and DO remove the mesh completely. Unfortunately, there are not many of them. Letting an inexperienced doctor “try” to remove it, could very well lead to much worse problems. Mesh removal is not easy. It is meant to be permanent.
Please see: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
She may also want to join a support group. There are many This has a list of other resources: https://www.facebook.com/notes/mesh-me-not/links-to-resources-support-groups-and-information-regarding-surgical-mesh-compli/299518930182658 .
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Is there a site that address transvaginal, hernia, rectal mesh? I have it all and every day goes by I get worse.
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Hi…. and, so sorry you are dealing wtiht so much. =(
Yes, the lawyers are focusing on TVT mesh, because of the way it was marketed allowing them to have more of a case than hernia mesh that was used for longer. But, it IS the same material, and MANY are suffering from hernia mesh too.
Please check out this OPEN/public group for all: https://www.facebook.com/groups/meshproblems/,
or this support group: https://www.facebook.com/groups/111893665491196
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Hi I’m Chrissy I’m 33 and I had the mini arc sling done in November of 2015 it has been awful since none of the doctors I seen in Indiana will remove it they make excuses and make me sound as if I’m making this up or its in my head. I am willing to travel my life is miserable, my marriage and intimacy is ruined and I’m very desperate.
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Chrissy – Unfortunately, that is how many of us were treated by our doctors. As if we were making things up. It’s not right. They either have no clue, or they do not want to get involved.. or both. Regardless, it is NOT acceptable. You really need to get to one of the few specialists that remove mesh regularly to get any real help.
Please check out this article – and the links at the end to more resources and support groups. https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
Hang in there… and I hope you get some real help soon. ❤
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Yes…. I’m in WV…. 3 years ago I made the trip to see Dr. Raz… Love him… Love UCLA…. Only Dr and hospital that won’t tell u that your crazy
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I have 3 different mesh they used for
My bladder repair I’ve been trying for 5 years to get some help I have rash all over my body including my head which is driving me crazy I thought I had some crazy allergy I’ve been tested for all allergies and nothing shows up my dr says its from internal I’ve looked up other patients who has my same rash from mesh along with abdominal pain I desperately need help and don’t know where to turn if anyone can tell me who to call I’d appreciate it
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Dr. Hibner (Phoenix, AZ) removed mine last year and according to the pathology report, he took it all out. The pathologist calculated this by comparing the measurements of the pieces removed with the original device. Honestly, I also feel like it’s gone. The “cage-like” feeling in my vagina and tailbone are gone. Your other question, about who does traditional surgeries — those docs should be easier to find because generations of women had bladder suspensions using their own ligaments for support. Maybe ask some older women in your community. The bigger question is, do our bodies have the tensile strength for this now that we’ve endured two surgeries down there, i.e., one for mesh placement and one for removal? Mine does not feel like it could handle that, whatsoever. However, another six months of wetting myself will have me singing a new tune, I am sure.
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Thank you for your comment and input, Catherine. I have heard good things from some others about Dr. Hibner as well. Sorry you are dealing with incontinence issues now. That seems to be a common problem as well. I hope your body continues to heel and that down the road you can have further repairs with your own tissue if/when warranted and possible. Please keep us posted.
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Hi I’m trying to see Dr at Phoenix also does he accepted medicade. insurance molina cinntenal.
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University of Michigan Woman’s Center at the U. Dr. Dee Fenner .
She does not use mesh , they use your own tissue/fascia.
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Hi my fiancé suffers as we speak from mesh complications. We’re located in wv. We’re looking for a doctor. We thought we had a chance at Cleveland clinic and had all the appointments and paperwork ready to go and then suddenly shut her down with can’t except her insurance nor charity could or wouldn’t help. So any advice ?
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Derick,
Thank you for trying to help your fiancé. Too often, women do not have little to no support, and it really makes a difference. So many doctors are just not helpful.
Please check out this other post, and the links at the end to lists at recommended doctors (still not many), and other resources. You can also try asking around in some of the larger support groups (links to them at the end of those posts, and from the footer of this blog).
Hang in there and take care.
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To all out there don’t go To Cleveland Clinic 6 years ago same thing they let you go through ALL exasperated tests right up to Appointments of surgery then they find a way to cancel you
Any one wanting the Dr that saved my life .. Dr. Linda Kiley Palm Beach Florida. She is unbelievable surgeon. And operates on women in desperation. Although we will all be left with in continence….. Sad … No sex for me too many horrible spasms every day . This truly does change the rest of our lives …..
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I am looking for some help. Desperate! I had a mess implanted in me during cancer surgery. As soon as the cancer doctor was through the other doctor implanted it for sui. Had problems right away. Infections, etc. Was told by doctor who had found cancer that I would have to have mess removed. He didn’t want involved and told me I had to go back to the doctor that implanted it. Got a lawyer. He said to not let the doctors to know I had one. (Lawyer sent in a container to freeze the removed mess from me and doctor knew).This doctor did a real bad job on me and said he couldn’t remove but a little of it and that he had slung a piece of the rotten mesh on my bladder. He said he was fed up with women suing over the mesh and that he would make sure I didn’t live to see any of the settlement. He said he would make certain that no one would believe me. I was shocked and frightened. (Still am) It took about 2 more years before I could get to a doctor that showed me the mesh on my bladder. He changed my records. Said I was happy with therapy but was not. Got sent to therapy. I feel that a total of 4 doctors are involved in this cover-up. 2 years later am being sent back to one of those doctors. Lawyer insisting. (Don’t trust none of them, including her) Feel like I can’t make it much longer. Had quit pain clinic and need pain meds and something to hold nerves together. Was to doped up to know what was going on. Need mesh doctor and others desperately. Don’t know what to do or where to go! Need to get advice. And where to go for help. Somewhere for now for pain need and nerve need. AND where to go for mesh removal. If anyone knows anything please tell me. Love everyone! Please pray!
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Collena,
OMG. That is terrible. I am so sorry you have been treated so poorly and are going through so much.
You really need to get to one of the few specialist doctors that deal with mesh removal and non-mesh repairs. There are not enough of them, and many of us have had to travel. Most doctors will offer a partial removal and/or pain management. This blog post, and the links at the end of it may help: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
Are you on Facebook? There are support groups with many others dealing with mesh complications. Please try:
– The :Women’s POP/SUI TVMesh Complications Support” group (Closed group):
https://www.facebook.com/groups/317477065098820/
– And for general info in a PUBLIC/OPEN group, see:
https://www.facebook.com/groups/meshproblems/
Please keep researching and reading. I know it’s overwhelming but there are more folks out there trying to help too… and in the same boat. Please hang in there! ❤
Deb
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I began to have horrific pain in my legs which was inhumane. I’ve been getting radio frequency ablation in my lumbar spine which I have been told have nothing to do with the legs but for some reason it’s been helping me till now. Recently I started bleeding in my urine then passing clots. 10 months of antibiotics for uti infection. Now shedding lining in my bladder. Not good! This all started after I started getting severe pelvic pain. I have seen 2 different urognegologists and 1 wants to clip it in office, the other says it’s hanging and go in and do botox injections and I don’t know what else. She told me this off record as I was leaving. Nice ha! .I’m in the Phoenix area. I have medicare and state aid. I can’t travel to another state I’m on disability and I could not afford to travel. Anyone who has any ideas please help.I’ve been in bed for 3 months. I would appreciate it. Barb
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I am also starting to have pain in my legs what is that process I want to know what I’m up for as far as my legs are concerned
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The process for me was to get the major run around, and go to bunch of different specialists/doctors who all told me something different, and nothing really helped… I just kept getting worse, until I could barely walk, even with a crutch and pain meds. I finally made up my mind to go to Dr. Raz, and for me, that was the best thing I ever did.
So many of us with mesh, especially those who had a TOT sling, suffer groin/leg/hip pain, but most doctors still all tell us that is it NOT mesh related. They are WRONG. That is why it’s so important to get to one of the doctors that actually deals with mesh complications and can do full removals.
Please see: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
Also see the pic here… you are NOT alone.
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Barbara,
I’m so sorry for all you are going through, and for the delayed response. =( I am really behind on this blog. I hope you were able to find some info from some of the links. There are support groups where you may find more answers if you are on Facebook. ? LIke: https://www.facebook.com/groups/317477065098820/
You really need to get to one of the few experts that deal with mesh complications. Unfortunately, most doctors will not really be able to help you. Please do not let the doctor that wants to “snip” the mesh in their office do that. That is a partial removal and can make thinsg so much worse. =(
Please see this other post – and the links at the end.
I believe there are a couple doctors in Arizona that some people have recommended, like Dr. Hibner. There are not enough doctors around, though, and that is why so many of us have had to travel. Whoever you go to, ask a lot of questions, and don’t be afraid to go to more than one doc for consults. ❤
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I’m a 55 yr old Male
Is there any good Dr. That do Male full removal
I’ve benn looking and can only find Dr. That will only do Women. Please let me know of a good Dr
Thanks
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Scott,
There are many men (and women) suffering from hernia mesh complications too. At the end of this post (https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/)
there’s a link to a list of Hernia docs in the Mesh Problems group:https://www.facebook.com/notes/mesh-problems/list-of-doctors-who-remove-hernia-mesh/971281296236148
Dr, Petersen and Dr. Ramshaw are probably the ones I hear of the most and their info is on that list.
You may also want to join this support group, if you are on Facebook:
Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plug – https://www.facebook.com/groups/111893665491196/
❤
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I am looking for a doctor to remove mesh also.
I had a bladder lift/ partial hysterectomy and upsylon mesh was used. I’m having lots of complications and wish I never had mesh put in.
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I’m so sorry. It makes me so mad that they are still putting these products into so many, wen so many are suffering so badly. =(
I would also suggest to you to try to get to one of the few experts that deal with mesh complications. Please see this other post – and the links at the end.
As well as maybe checking out some of the support groups on FB… LIke: https://www.facebook.com/groups/317477065098820/
❤
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Dr. Mario Castellanos did my full mesh removal and Birch procedure to repair my TPOP afterwards. He is located in Phoenix, AZ, and is an amazing Dr.!
Good luck ladies! ❤
D
https://www.dignityhealth.org/stjosephs/services/womens-health/pelvic-pain-and-gynecologic-surgery/meet-the-team/mario-castellanos
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Dr Veronikis doesnt use mesh i just had my surgery in janurary. ..he excised or removed two mesh implants …The most compassionate person I’ve ever met…He’s a healer gifted from the lord to save us women..contact him at …Head of Reconstructive Surgery at Mercy Hospital on New Ballas Rd saint louis missouri. .314 251 6753..Best call you can make if mesh injured working towards getting your life back…
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I need to see a doctor that special I lines in transnational mesh revision, I had surgery 8 years ago and have problems the whole time . A lot of pain and it limits me of a normal life. Please contact me .I am asking if there is a place in Harrisburg or Philadelphia PA I was just on the Web to get the phone number , was surprised that I got to CA, any suggestions please contact.
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Lorraine,
Glad you found my blog. I’m not a doctor…. just a woman who was harmed by mesh, and trying to share info. There are not many doctors that can really help with mesh complications – and I’m trying to find more. That was the gist of this post. I am from NY, and I did go all the way to CA for mesh removal… that is why Dr. Raz’s info is here. But, there are more doctors that are helping others elsewhere now. I don’t know any docs in PA myself… but, please see this post, and check the links at the end with lists and more information. https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/
Are you on Facebook? There’s also links there to a few larger support groups – where others may be from PA.
Hang in there… and keep trying.
❤ Deb
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Hi. I am having lots of trouble finding a specialist that will fix a uterine and bladder prolapse in eastern connecticut. Two relatives have died from complications with mesh inserts because the surgeon would not go back in to fix or remove. At this point I am beside myself to find a good doctor. Any ideas? Thank you. Carole Karvoski in Lebanon, Ct..
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There are doctors that can do repairs without mesh – and they are worth seeking out. Often, these are older docs that were trained in the original methods before mesh came along. However, more and more women are requesting NO-MESH repairs – so, there are more doctors offering this.
Are you on Facebook? There are support groups with many others dealing with mesh complications. Please try:
– The :Women’s POP/SUI TVMesh Complications Support” group (Closed group):
https://www.facebook.com/groups/317477065098820/
– And for general info in a PUBLIC/OPEN group, see:
https://www.facebook.com/groups/meshproblems/
You can search the groups for CT… or ask if anyone reccomends anyone from there. Also see this post, and the links at the end to more resources and lists:
While that post focuses on doctors that can REMOVE mesh, often they are the same ones that can/will do non-mesh repairs.
I’m glad you are researching things and asking questions! Please don’t get mesh. ❤
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Carole – Have you had any luck finding a doc to help you? It’s amazing how difficult it still is for most women who are suffering from mesh complications to find doctors that will help. =(
Please see this post, and the links to more resources at the end:
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I hope I can find a reputable doctor in Pa
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I wanted this group to know of some more Doctors that have successfully completed a full removal of an infected\failed mesh on 7/25/17 at Northwestern Medical Center in Chicago IL. In my particular case I had about 18″ of bowel that had to be removed because it was adhered to the mesh. This was my fifth open abdominal surgery. I had a Bard Dual Kugel mesh implanted for a ventral hernia back in June 2010. My recovery has been amazing and the incision\my abdomen looks amazing compared to all of my previous surgeries! The procedure was performed by the following doctors:
Colorectal Surgeon (Mesh removal\bowel resection):
Dr. Kyle Mueller
Northwestern Surgical Associates
Arkes Family Pavilion
676 N Saint Clair Street Suite #1525
Chicago, IL 60611
(312) 475-9327
http://www.northwesternsurgicalassociates.com
Plastic Surgeon (Abdominal wall reconstruction and wound closure):
Dr. Gregory Dumanian
Northwestern Plastic Surgery
675 N Saint Clair Street Suite #19-250
Chicago, IL 60611
(312)695-6022
http://northwesternplasticsurgery.com
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This is good to hear, Josh. Thank you for sharing. How are you feeling now that it’s been a few months since surgery? I hope better and better!
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I want the best surgeons in India who can remove 100% full hernia mesh in india
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HI,
Thank you for posting this information!
I am looking for a doctor in the Boston Massachusetts area who deals with mesh removal and I am having the hardest time. Can you help me? Do you know of anyone?
Many thanks in advance!
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Hi Diane, I don’t know of a doc in Boston personally… but, please check the links at the end of this post (https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications). If you are on Facebook, please ask around and use the search tools in the groups. Don’t give up looking for a good doc. They are worth the effort to get to!
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Does dr. Raz still do mesh removal ?
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As we speak I am in the hospital in Las Vegas getting antibodics…and had a Hickman placement and will have one month home healthcare ..I too need to have the mesh removal but need to clear infection…
If and how fo I get Dr Raz or id there a Dr at UC SN Diego. Or Henry Ford in Detroit. Qqq
Thank you
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Hello.. I need to find Doctors in the
Jacksonville Fl. Area plus extended nearby locations, who handle full mesh removal for abdominal hernias which repair has has problems & needs removal. CT scans are ordered by primary so far but need to find Dr with correct expertise in mesh removal & RE-repair with non mesh alternatives.
I’ve been reading all the research online & see that it’s mandatory to find a surgeon who has performed many successful mesh removals and ie repairs vs a surgeon who doesn’t have inside knowledge of our complicated mesh problems the mesh has caused our bodies. Please help me with any information. I thank you in advance for any help you can extend.
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