Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

Suffering from Mesh Complications in Upstate NY? (Rochester? Buffalo? Syracuse? Albany?)

nyAre you from upstate NY and suffering from mesh complications?  Me too!  Who knew, right?  Originally, when I was having problems after my mesh implant – I felt very alone, and like I was the only one in the world having such problems.  This feeling was largely perpetuated by what doctors were telling me at the time, as I bounced around between specialists – each one sending me to a different specialist.  As time went by, and I researched things on my own, and eventually made the right connections (thank you WWW!), and met the right doctors – I realized that I was/am far from alone.

Initially, I only found women (and doctors) in far away places that seemed to relate.  Some, having similar, but very different experiences… and some almost identical to my own.    When I went to UCLA for mesh removal, I met several other women there from all over the country who had also traveled to see Dr. Raz.  It was like a hot spot for people dealing with mesh complications.   A few of us talked for hours in the hotel lobby, and for some of us it was the first time we really felt truly understood.

As more time went on, I realized that not only are there thousands and thousands of women all over the world suffering a variety of severe complications from mesh, but that there are women right in my area of upstate NY.  A couple of these local women found me through this blog,  and/or Facebook, and I have been fortunate to meet or at least talk to them on the phone or through online media.    I’ve come to the conclusion that there are MANY MANY more in this area, that I simply have not met.  Either way, it prompted me to want to write this post.

I would like to find more women in the NY area, especially Upstate NY (Rochester, Syracuse, Buffalo, Albany, Finger Lakes, etc.) that are dealing with complications after mesh implants.   While I always feel terrible to learn of another women suffering, I know it is also helpful and validating to talk to other women who can relate.  When I talked to the women from my own area, not only could we relate to the issues and experiences, but we also knew some of the same doctors/hospitals/resources.   Sadly, I don’t feel like I had a lot of good resources to share with them, as I personally had my mesh removed across the country in CA.   Maybe, between us, we could find more good help in this area.  Maybe, we can even find some local doctors and people we won’t have to travel all the way to UCLA for mesh removal, like I did?

Don’t get me wrong.  I LOVE Dr. Raz – and I am SOOOO glad I went to him… even if it did mean flying across the country.  I would do it again in a heart-beat because I really feel like that was my best option.  I have yet to find a doctor that I believe is more competent, or that I’ve heard as many positive reviews from the women who have been to him. It wasn’t easy…  but, I know that I am very fortunate to have had the insurance and means to go to Dr. Raz, and am so thankful to have my mesh OUT.   I know that for many, MANY, women – this is so simply NOT the case.

I have heard of a few other doctors doing full mesh removals, and some are getting very good reviews from others. I have heard a lot of good things recently about of a Dr Veronikis in St. Louis, but I never met/saw him myself.   There is a one local doctor I recently heard about – but, I have not actually talked to anyone who actually had surgery with them as of yet.  I know in some of forums  they have started lists of doctors recommended by others (See: Links on Mesh), which I think is great.  I believe we should be sharing resources and am thankful for the groups and websites that do.   Ultimately, there’s a lot of opinions and no one cookie-cutter correct response, surgery, doctor, or treatment.  I’m all for everyone making their own educated decisions and advocating for what they feel is best, and promoting what worked for them.  In my blog here, I feel that I can only truly advocate for what I personally believe, have experienced and found helpful…. and for MESH REMOVAL – as far as I’m concerned, Dr. Raz is right up there at the top.  (For information on Dr. Raz, and my surgery at UCLA, please click here.)

However, I’m not talking just about mesh removal in this post.  I’m talking about finding good resources for those suffering from mesh complications, and sharing what has been helpful, in general.   I’m especially interested in finding resources in MY area – Upstate NY – more specifically, Rochester, NY.    I do think getting the mesh OUT is usually the most important thing to do – but, until it’s out (and that can be a longtime)… and unfortunately, even AFTER it’s out, there are usually issues to deal with.

So, with that in mind…  I would like to give a shout out to  a couple local, Rochester NY,  practices…. You know, just in case anyone from Rochester stumbles across this.   No, I don’t work there… and I’m not being paid anything.  I’m just a patient and these are specialists who I feel not only really know their stuff and helped (or are helping) me, but also people that seemed to really HEAR my concerns and complaints.  The two I’d like to mention are:

Specialty Physical Therapy
 Wendy M. Featherstone, Physical Therapist/Owner
Jennifer Morin, Physical Therapist
2233 South Clinton Ave, Rochester, NY 14618
p: 585.473.1290
f: 585.473.1293
e: wendymfpt@hotmail.com
website: www.specialtyphystherapy.com
“Specialty Physical Therapy is a private clinic located in Rochester NY. The practice specializes in expert physical therapy assessment and treatment of women’s and men’s health issues, pelvic pain, incontinence, musculoskeletal pain, and pregnancy-related pain and dysfunction.”

The Pain Relief Center
Walt Fritz

980 Westfall Rd, Building 100, Suite 105, Rochester, NY 14618
p:  585-244-6180
f :  1-866-413-9019
e: walt@waltfritz.com
website: www.myofascialpainrelief.com/treatment/pelvic-pain-and-dysfunction
“Walt Fritz, PT is a New York State Licensed physical therapist with over 28 years of experience. He is the most experienced myofascial release therapist in the entire Rochester and Finger Lakes region. The Pain Relief Center has been helping others get out of pain and get on with their lives for years. The goal of treatment is to create positive, lasting changes. “

If others want to comment on this post, leaving comments and add POSITIVE reviews on here to what they found helpful, in this area or their own areas, that would be cool.  You could also private message me on my Meshmenot Facebook Page.

If you do comment here, please be careful what you post and how you word things.  This is not a place to solicit your own business.  I also do not want (and won’t allow) people to start trashing any doctors publicly here that they did not have good experiences with.   This is not a place for that… and not a good idea in general since you can get in trouble for slander, etc.    I would, however, recommend that people make both good and bad reviews on your various doctors on sites like Vitals.com (ww.vitals.com) or Healthgrades (www.healthgrades.com).

Hope to hear from more Upstate NewYorkers!  Please feel free to leave a comment here, and/or contact me on Facebook.

Take care everyone (wherever you may call home!).

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14 Responses »

  1. There is a new urogynecologist in Albany who deals with mesh complications and does full mesh removal. Dr. Erin Crosby at Albany Medical Center. albanyurogyn.com — She did her training/fellowship at Michigan, which is one of the top programs for this sort of stuff.

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    • Marcus, Thank you for this information! I am not familiar with this doctor, but I see on her page that it mentions she specializes in treating pelvic floor issues “without the use of mesh” ( http://www.amc.edu/PhysicianDirectory/index.cfm?event=showPhysicianDetail&PRACT_ID=19265) . That alone makes me think highly of her. So glad to find at least a few more doctors NOT advocating for the use of mesh. I guess I would want to know if she is doing mesh removal, and yes, if she tries to remove all the mesh or just does the standard partial removalss? Another good question is how many mesh removal surgeries, since it a very complicated surgery.

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      • Full disclosure: She’s my wife 🙂 ..I was just doing some web searches for her specialty when I found your post. Anyhow, I asked her your questions. Like you said, she specializes in treating these issues without mesh — that was a big focus in her training. She was pretty hesitant to let me post any claims of what she can or cannot do/remove on a blog comment, but from what I gather mesh removal is pretty complicated and there are times when partial removal is all you can try to do and other times when you can try to remove it all. And she was pretty clear that even when trying to do a “full removal” it’s often impossible to get 100%, even if that’s the goal. Strands may remain. So yes she does mesh removal and whether it’s partial or “full” completely depends on the patient and what her situation is.

        She also focused on mesh complications for some of her research she presented at national meetings and that was published in the Green Journal. http://journals.lww.com/greenjournal/Abstract/2014/01000/Symptom_Resolution_After_Operative_Management_of.19.aspx I just mention that to say that this mesh stuff — ie operating with out it and also helping women with mesh complications — is a huge passion of hers and she’s studied it thoroughly.

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        • Thank you for the information and full disclosure. =) I can see why any doc would be hesitant to get into details… I know every patient is different, and so much depends on the type of mesh, the type of complications, etc. I also know that no doctor, not even Dr. Raz, can guarantee 100% mesh removal… and how much can be removed also depends on a lot. I just know that most women who only had “partial removals”, where the doctor did not even try to get most of the mesh – but just removed the part that was visibly eroding through their vaginal wall, or whatever – those women seem to wind up with more problems… more pain… more surgeries. I wrote a post on this here: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery/

          I do want to thank you again for mentioning your wife, Dr. Erin Crosby at Albany Medical Center. I am so glad to learn of more doctors that are able to help women without using mesh… as well as help those who need help with mesh removal, and repairing the damage it has done. I talk to women all the time, desperate for help. There are Facebook support groups that are just growing and growing, and their stories are all so similar, yet also always unique. The problems they are dealing with are devastating and NOT manageable at all. They are literally lining up to go see Dr. Raz at UCLA, and Dr. Veronokis in St. Louis, because those two doctors seem to have the best reputations with the ladies who have had mesh removal. Often they go to them after they have already had partial mesh removals by their local doctors. But, not everyone can get to them. We need more doctors everywhere who will start paying attention to these women and really help them… Maybe even more importantly, we need doctors to stop putting mesh IN women in the first place. So, thank you, and especially your wife, again! =)

          I just mentioned her on my Facebook Page (https://www.facebook.com/MeshMeNot), and I hope to make a blog post here soon, featuring some docs who do not use mesh… and will be happy to mention her again when I do. If she has any other articles or info she would like to share, please let me know and I will link to them.

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  2. Omg I can not thank you enough for this info! I live outside of Rochester and have never been normal after my hernia surgery. It is now time to do something about it! Thanks again.

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  3. I am from the Utica area. During a female related surgery last week, I was informed that I had 2 inguinal hernias that were too involved to repair while I was under. My gynecologist said I need to have them repaired. He recommends a surgeon who will use plugs. Are plugs the same as mesh? I had hernia surgery years ago, but I am not sure if mesh was used. Those hernias quickly returned and then 3 years ago they were repaired during my hysterectomy by my gynecologist. I’m not sure if my 2 current hernias are the same or new ones. Regardless, I’ve got to find the best surgeon as I’m tired of dealing with this. I’m willing to travel to Albany or Syracuse. Ideally, a Utica area doctor would be convenient, but I’ll travel to find the best. Any recommendations would be greatly appreciated.

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  4. I suffered from mesh problems for 9 years Drs here in western ny was no help at all they just kept passing me along to dr to dr finally found a dr in NYC that could help he is a angel from heaven! Dr Brian Jacob was able to remove my mesh and the healing process has began I owe my life to this dr for saving my legs and giving me back my life

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  5. I have had both types of mesh out inside me and have nothing but issues and Dr’s when I see them always say good luck finding someone to help u. I live in chenango county which is outside Binghamton. Please contact me via gmail

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    • Hi Heather,

      I tried to email you – but, it apparently bounced back. I’m so sorry to hear about your difficulties. But, unfortunately, it sounds very familiar.

      Do you mean you have hernia mesh and TVT mesh? Or that you had a mesh for prolapse, and for sui? Either way, unfortunately, there are not really any easy answers with mesh complications. There are not many doctors that are actually helping women with issues from mesh. Most doctors will not recognize problems are from mesh, and even if/when they do – most can not remove it all. It’s not easy, and mesh is not meant to be removed. I would not let them try if they don’t have experience. But, there are a few doctors that CAN remove it. Because of this, many have traveled to reputable doctors. There are a few more doctors now than there were a few years back, when I went all the way to UCLA for mesh removal. However, there are still not nearly enough – and you really have to be careful that they know what they are doing.

      This post, and the links at the end to other resources might help:
      https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

      Are you on Facebook? There are also many support groups with others dealing with mesh complications. Once in a group, you can also search or doctor names, etc., as well to see if anyone already made comments on them, etc.

      I started a New York Support group a few years ago – hoping to find more doctors, etc. It has been hard, and the group is still small – but, please join it if you are on Facebook. There may be others in your area.
      – Mesh Me Not – NY (Closed Group): https://www.facebook.com/groups/MeshMeNotNY/

      There’s also these other larger groups that are not mine, but can offer a lot of into/support:

      – 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, (open to all family members, etc.) see:
      https://www.facebook.com/meshproblems/

      Please hang in there and please do check out the links… and I hope you get good feedback from others in the groups too.

      I hope this helps a bit. Please hang in there!
      Deb

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  6. I really am in of help. I had a bladder sling implanted my husband and I tried to be to have some private time and both got poked by it the doctor said I need to have surgery he said could not get it all. Since then I’ve had several infections when to yet another doctor and soon as I mention bladder sling it’s like I’m cursed I here what do you want me to do about it. I’m in pain all the time my bladder seems to be off to me I feel my bladder is empty and sure enough I stand up and down my leg urine. I can’t take the it no more. The doctor who did the surgery said I might have nerve damage but would not put it In writing. I’m almost 51 I hate the I’m not a doctor but I can feel something is wrong. What can I do I don’t have any money to travel across the country. Please help thank you

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  7. I’m from western ny have vaginal mesh and needs to come out but doctors gives me run around and excuse why it impossible to come out that it takes a big team to do it. Been living on antibiotics metronidazole. Why when they put it in they should be able to take it out! Frustrating
    Doreen

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