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

Why I Went All the Way to UCLA for Mesh Removal Surgery

Going to UCLA...

Going to UCLA…

I had a full mesh removal surgery in Jan 2013 at UCLA, with Dr. Raz.  The removal surgery was not easy, but went well.  Dr. Raz was able to remove my entire mesh TOT sling – including the “arms” that were in my groin area.  “Full mesh removal” is something most doctors will not even attempt to do.  Matter of fact, I had a local UroGynecologist tell me it “wasn’t possible”.  Luckily, I knew they were wrong, so I made the hard decision to go to UCLA for at least a consult. The consult helped me make my decision to go there for surgery.

Wait.  ?  You are from NY, but went to CA for Mesh Removal Surgery?

Yes.  Yes, I did.  And, I would do it again.

Many people seem to find it hard to believe that I went all the way to CA for treatment for my mesh complications.   Some think it sounds ridiculous.  Well, it was not an easy decision for me to make either.  It was also not an easy thing to do.  I am not rich.  I do not travel a lot. I had never even been to California before.  And, at that time, I was not even getting around at all without a cane or crutch.

My initial response when someone suggested I should go to Dr. Raz at UCLA for surgery, was the same response as many others who have mesh complications.  I said,

“that is not possible”,
“there is no way I can go all the way to CA”,
“we simply can’t afford it”, and
“there HAS to be a doctor around here that can help!”

The more I researched and got bounced from doctor to doctor – the more my condition only worsened.  Soon, I began to think going to UCLA to see Dr. Raz was my best option if I wanted to get better.

It didn’t feel like I had a lot of options, really.

I could either;

A) have a partial removal by the local “expert” UroGyn
(which I not only did NOT think would help, but I also was afraid could make things even worse).
Or,
B)  find a doctor, and travel to them if necessary, that was doing full mesh removals, and would remove the mesh in my thigh/groin area (where all my pain stemmed from, and also where local doctors refused to touch).

Neither option seemed all that great, but I was leaning towards plan B more and more.  When I first started researching this in 2012, I only heard of a few doctors that would even try to remove all the mesh, including the “arms” in the groin area.  Most of them were not anywhere close to where I lived in upstate NY.  There was one doctor I heard of in NYC that might be able to help me, but I could not find very much information on them at that time, and even NYC is a 6 hour drive away from me.

I finally decided that if I had to travel, I may as well travel to “the best”.

impossibleAs I researched my options, and talked to others who were dealing with mesh complications, there was one name that kept coming up in a positive light – Dr. Raz.  From what I could tell, he was the most experienced with mesh removal, and had helped countless other women when other doctors could not/would not.  He sounded like a miracle worker to me, because he and his associates at UCLA were doing things that other doctors were routinely saying was impossible.

At the same time I was learning about Dr. Raz, I was also hearing more and more horror stories from other women who were having partial removal surgery, after partial removal surgery.  I heard about women in wheel chairs, and I was already using a crutch or cane so this was alarming to me.  There were women who had permanent nerve damage, colostomy bags, permanent catheters, and chronic infections.   The really scary part was, there were so many of them.  They were NOT alone.  I heard of women traveling from all over, even far away countries, to get to Dr. Raz for mesh removal.  Often after other doctors had failed them.  Many were just given up on by their doctors after multiple surgeries, and basically sentenced to a life of pain management and just dealing with their complex, often debilitating, mesh complications.   Very few were actually referred to Dr. Raz by another doctor.  I heard of one woman and her husband that sold their rental home and bought an RV so they could  drive to California (from Oklahoma) to see Dr. Raz.  This  poor woman could not sit, so she could not fly… and after 11 years (you heard me, ELEVEN YEARS) of surgeries and deteriorating health…. this was the only way they could think of to get her some help.

Can you say “desperate”?  Yes, “desperate” is a good word to describe women who have complications from mesh.

As I was bounced around from doctor to doctor, I started to feel that desperation myself.  It was then I decided that I at least needed to get to Dr. Raz for a consult.  If I liked him, I decided I would have my mesh removal surgery in CA, despite the obstacles and difficulties in getting there.

I decided Dr. Raz was my “best shot”.  

This man saved my life! He did what others told me was not possible. I have so much respect and admiration for him.

This man saved my life! He did what others told me was not possible. I have so much respect and admiration for him.

I decided that if I had to travel for a day and stay in a hotel – then what did it matter if I drove for a day, or flew in a plane for a day?  Either way I had to stay in a hotel, and go to an unfamiliar place.  I decided that if I had to travel – that I might was well travel to the doctor that I had heard so many good things about.

Dr. Raz seemed to have the most experience and positive feedback from others.  This was despite the fact that he did not have a large on-line presence, or self-promoting website advertising his services.   No, I was finding out about him by word of mouth.  I talked first-hand to a few of the many women singing his praises.  It is even said that part of Dr. Raz’s skills removing mesh relate back to when he was a trauma surgeon in Israel and needed to remove shrapnel from deep tissue.  

I also greatly appreciated that Dr. Raz no longer used mesh himself, and that he fully acknowledged the damages mesh was causing.  Both difficult qualities to find in a Urologist, OB/GYN, or UroGyn.   Personally, I would rather use a doctor who feels the same way about mesh as I do – that it is bad – so, they don’t use it. I realize it is not very easy to find a doctor who doesn’t use mesh at all.  All the more reason I appreciate this about Dr. Raz.  

I also heard that UCLA, where he works out of, is one of the only places that uses a test called the “translabial ultrasound”, that could “see” the mesh.  This seemed like a good idea to me, rather than going in blindly and trying to find the mesh. 

I think Dr. Raz’s experience, and proven track record with mesh removal were what mattered most to me.  I did not want to be anyone’s guinea pig again.  I was not willing to let a doctor “try” to do something that they had never done, or only remove part of the mesh that they knew how to remove.  Especially when their failure could cause further, and possibly permanent, damage to me.

Indeed, I did feel like the rest of my life was hanging in the balance of this surgery.  Wasn’t it?  It was then that I decided to put myself first.  It wasn’t going to be easy on anyone…. not financially or otherwise, but I was going to do what I felt was the very best option I had.   I thought about my kids, and how if it were one of them, I would not hesitate to say, “they deserve to go to THE BEST doctor I can find”.  And I thought about how my 10 year old son had recently told me, “Mom? I don’t like you like this“.  He wasn’t trying to be mean, he meant he didn’t like me using the crutch and being in pain all the time. Well, I didn’t like me like that either.  So, I decided on Dr. Raz, and I was not doing this just for me… but, also for my family.  They also deserved the best shot of having their mother, and wife back.  

I became VERY determined to get to Dr. Raz at UCLA.

For my consultation, I think I called every day, twice a day to get in on a cancellation.  Surgery wasn’t as easy.  There was a long wait, and an even longer cancellation list.  But, I know my determination was only part of the equation.  I realize that I am extremely fortunate to have been able to catch some breaks.  I had decent health insurance, which to my surprise was accepted at UCLA.  My family also had unexpected help in the form of donated airline points from a friend to cover airline costs for one of our trips out to CA – this was quite a gift!  My Primary care doctor was in favor of my going to see Dr. Raz.  My husband and family were also very supportive.  All this made things easier.  Then, there was all the wonderful support and information I found from strangers online.  People I met in online forums and websites.  Those who had already made the trip before me, proving it was possible.  Many thanks goes out to so, so many, who helped me through such a difficult time in my life.

alone-gI understand that not everyone can get to Dr. Raz.  I know that I am much luckier than a lot of women suffering from mesh, and  my heart goes out to them.   That is part of why I started this blog.   Often, women have lost everything by the time they are trying to get to Dr. Raz.   They have understandably listened to their doctors, and had partial mesh removal surgeries.  They may have lost their jobs… their health insurance… their husbands.  So many do NOT have any support.

I have heard of women doing fundraising, and whatever it takes to get to Dr. Raz.   There are some airlines giving free airfare, and there are more people that are trying to help those who need it.  However, unfortunately, there are also people taking advantage of the already injured.  Please be very careful when choosing your doctor, or an attorney for that matter.

More recently, there are more doctors stepping up to the plate and helping women, like Dr. Veronikis in St. Louis who many are also going to now and reporting good things on.  Sadly, there are still not very many options.  At least not for doctors who are doing full mesh removal, and have a proven track record.  We definitely DO need more good doctors,  and I encourage anyone to share both positive and negative reviews on any doctors they have seen.  But, I am only speaking from my own experience, and I have nothing but good things to say about Dr. Raz.

It is also true that after full mesh removal, further repairs are often needed.  So much depends on what damage was already done.  Dr. Raz is one of the doctors that can do pelvic repairs without putting more mesh in – but there may be others near you who can help with non-mesh repairs too.  They are easier to find than finding a doctor who does full mesh removal.  I was fortunate to find a local doctor who does not use mesh.  He doesn’t believe in it and never used it.  He also could not/would not remove any mesh, but at least if I need further repairs he could do that without mesh.  Sadly, even Dr. Raz cannot undo permanent damage once it’s been done.  I still believe getting the mesh OUT, so that it does not continue to cause even MORE damage, is the best first step.

My only real problem with Dr. Raz, is that there is only ONE of him.   Because of this, he is in very high demand.   The wait to get into see him can be brutal.  I did have to wait almost 6 months from the time of my consult, to the time of my surgery.  It wasn’t easy, but I still feel like waiting to see him (rather than letting a less experienced doctor do a partial removal on me), and going to him for full mesh removal was the best thing I could have done.  After-all, the appeal of a “quick and easy” fix is a big part of how they are marketing surgical mesh so successfully in the first place – and I already knew how well THAT worked out for me (NOT so quick, OR easy!).  So, for me, Dr. Raz was worth the wait.

I would recommend Dr. Raz to anyone, and do.  I only hope that more doctors will follow in his foot-steps, and offer full mesh removal surgery to those suffering complications, and also stop using mesh for repairs.

So, there you have it.  Why I went all the way to California to have full mesh removal surgery with Dr. Raz.   I know that it is still difficult to believe that so many doctors are recommending partial mesh removals if they are causing so much damage.  It is also difficult to believe that so many doctors are still implanting mesh – but they are.  The whole situation is very confusing and frustrating.

There are, unfortunately, not any easy answers.  I understand that everyone has to go with their own best option, and has different obstacles to face.  I just hope they  get as much information as possible first, and make an educated decision and make the best choice they can, even if it is not the easiest to do.

meshladies1I would like to add that while it may seem ridiculous to have to travel so far to get help,  it seems a lot less crazy when you realize you are only one of many making that journey.   I met several other women on each of my visits to UCLA, that were also there to see Dr. Raz for mesh removal, and they were from all over the country.

So, don’t let anyone who is NOT going through mesh complications tell you otherwise.   In fact, I don’t believe I would be walking and doing so much better today, had I NOT made the trek to Dr. Raz.

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34 Responses »

  1. I also had to go to UCLA to have the mesh to be removed. The whole UCLA team was wonderful. Dr. Zachary Baxter performed my surgery. The erosion was so bad that we were only able to do the first part of my surgery. This part has to heal first and then I will have to go back in six months to complete it. I recommend all of the UCLA Urology staff.

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    • Hi Ginger. I’m not familiar with Dr. Baxter, but am happy that you are happy with him. I hope they can get the rest of the mesh out. Please keep us posted. And, best of luck to you. ❤ Hang in there.

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  2. I have it too, plus cancer twice and my hands are tied right now. I am in Texas! I know of no doctor here that can remove it. My surgeon said it is embedded and he can’t take it out.

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  3. Is there anyone in Texas that does this?

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  4. I just recently had mesh removal surgery in Orlando Florida. I’m very happy to report that the complete removal of the tvt sling was completely successful. I’m also very happy to report that just one day after surgery, I feel amazingly better than I have felt since 2009 when that horrible mesh was implanted. I am very happy to 100% reccommend Dr. Christopher Walker and his staff of Orlando Florida to anybody needing mesh revision/removal surgery. I feel so blessed that my searches led me to Dr. Walker. He completely restored my life back to where it was before my 7 year nightmare began.

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    • Hi Glenna. Thank you for your comment and good news. =) I’m so glad you are feeling better and getting some relief. I have heard about Dr. Walker. For some reason, I was thinking he did not do “full removals”, meaning he would not remove the anchors/arms. ? Are you saying he was able to remove all of your mesh – including the “tabs/anchors/arms”? Either way, just glad you are doing better. And to be “completely restored” is REALLY something. I do not know very many women who suffer from mesh complications who can say that. Most wind up with some kind of after-math … and usually take quite some time to heal. Please do keep me posted on your progress and congrats again! =)

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      • Why won’t doctors order a transvsginal ultrasound to check the mess?I am 72 yrs. old. Will I be able to undergo mesh removal?

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        • Barbara – I don’t know why, but most doctors do not know how to do the Translabial ultrasound. They try MRI’s and other tests, usually unsuccessfully at showing the mesh. I have met others in the support groups that are older than you and having mesh removed. So much depends the doctor you go to, as well as your own health, and details of the complications.

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          • Hi Deb,
            I was wondering if you can share the symptoms you were having that led you to your mesh removal, and also information about your recovery. I went to see a urologist who told me the sling removal would be more psinful than my symptoms. So, he scared me to death! Barb

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    • Hi Glenna, I had a mesh put in me in 2014. I think it was a total sling of some kind for a prolapse i had. I have had numerous urinary infections and a horrible burning feeling down in that area. The UTI’S I have luckily not had since Jan. Or so, but this burning is sometimes the worst. Did you have all this. My urogynicologist said she could take it out, but I could be incontinent if she takes it out. I live in Massachusetts. Write me back if you can. I would appreciate it. Thanks. Maureen Murray

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    • I also have a tvt that was put in 2004 and it’s been very uncomfortable all these years. I need to have this removed. Thank for recommendation.

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  5. Hi Deb. Dr. walker did say that he removed the entire mesh in one piece. The mesh ( or tvt tape as some doctors prefer to call it ) was twisted and wrapped around the bone which obviously caused me a lot of excruciating pain for over 7 years. As of right now, so far it has definitely improved my life for the better, but I’m aware that it takes 6 to 8 weeks for me to heal. I have a story to tell about how horrific my life was for the past 7 years, the pain I endured in the lower half of my body included my legs, thighs, hip, lower back and infections. Most of the doctors that I went to would not even acknowledge that this could have been as a result of mesh complications or injury. For me to feel total relief after the mesh removal more or less kind of proves that the mesh was what caused my disabling pain and complications. I’m very amazed that so far I have made this big of improvement this quick after revision surgery. I don’t think that Dr. walker removes all types of mesh. He had to get my medical records so he knew what kind of mesh I had and luckily I qualified for the revisional surgery. My guess is that he removes certain types of mesh. To make a long story short right now, I feel very blessed indeed to have ben led to Dr. Walker and his staff.

    Liked by 1 person

    • Hi Glenna. =) How are you doing? Would love an update if you stop by here. Hoping you are doing well!

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      • Hi Deb:
        I wanted to let you know I am doing very well since my Mesh Removal surgery.
        I’m so thankful that Dr. Walker was able to remove the entire mesh the first and only time of having surgery. I continue to improve and get stronger every day. I can honestly say getting the mesh out has almost completely given me back my life once again.

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        • Hi Glenna, I’m glad your doing better. I had a mesh put in 2014. It was for a prolapse i had. I also had a hysterectomy at the same time. I guess it’s some kind of a mesh sling that they used. Since then, I’ve had numerous uti’s and burning in there. That seems to be the worst feeling. The urinary infections have let up in the last four months, Thank God, but I still have that burning feeling down there, especially after I have to pee. Did you have any of these problems? And did they say what was causing these,problems? Please let me know Thanks. Maureen

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        • Hi Glenna,
          So happy for you. How long did you have your sling, and do you know what kind it was? Could you mention some of the symptoms you had, and tell us about Dr. Walker and your recovery? Do you have any contact information for Dr. Walker that you could share. So happy for your successful surgery..Barbara

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        • Hi Glenna, I hope you are still doing well. How is your recovery going? Have you had any problems occur? Did u have a TVT-O sling removed? How ling did you have it in? I am afraid that the recovery will be worse than the sling. Can it be removed if its imbedded? Did Dr. Walker do an ultradound to see the sling prior to your surgery? How lond did it take for to get an spt. with him? Barb

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          • Yes I had a TVT sling. Dr. Walker did not do an ultrasound on me because during my examination he could feel the mesh from where it was protruding out and it was also on the bone and sciatica nerve. He said the mesh has to be removed and the very next day after my exam, the surgery to remove mesh was done. His name is Dr. Christopher Walker. He is an Orlando eurogynecologist specialist. He is very professional and caring with his patients. I have a few phone numbers for him, but the easiest way is to search his name on internet, and you will get most recent information. 407-648-9400. Another number is 407-270-8901. I’m still feeling MUCH better now than I did the whole 7 years that I had that horrible mesh in my body. I would definitely recommend Dr. Walker for mesh removal.

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    • What kind of mesh was it?

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  6. Hi Deb,
    My mom is considering flying to the US from Sweden to see Dr Raz. Her insurance only offers coverage in Sweden, so we’re trying to get a sense for costs to determine if it’s even possible. She is also looking into a global insurance plan. Do you know if having prolapse in this case would be considered a pre-existing condition and therefore exclude removal from being covered? So much to consider 😦
    Thanks for making this blog.
    Jenny

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    • Jenny – I am so sorry your post slipped through my radar. How are you and your mother doing at this point? I hope by now you have found your answers. I really do not know how that works, and would have suggested you speak to the office stat at Dr. Raz’s practice. But, if you have any knowledge you can share no on the subject that would be great. I hope you and your Mom are doing better by now… or have plans in place. I know it can take a long time.

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  7. Hi Deb!
    Thanks for the reply. I wanted to share that my mom had surgery in January and it was hugely successful. Dr. Kim performed the surgery and it went better than we could have expected. She removed all the mesh and was able to repair the uterine and Cafu all prolapse at the same time. The hospital and nurses were amazing. We stayed at an airbnb that was walking distance from the hospital and made the stay much more comfortable. I will happily share the link to the apartment if it would be helpful for others. Thanks to your blog, this all was possible. We would never have known what the issues were all about or where to go. Thank you!

    Liked by 1 person

  8. Very good article. Glad I found you! Thank you!

    Like

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