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

By DebCNY • 2015/07/15

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”.

As 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.

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.

I 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.

I 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.

==============Related Mesh Me Not Blog Posts:

• Pictures and More Information from my trips to UCLA
• Dr. Shlomo Raz
• Finding the Right Doctor for Surgical Mesh Complications
• What is Wrong with Going to a Doctor Who Still Uses 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!
• Are you a GOOD mesh? Or a BAD mesh?
• 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
• You seriously have to go ALL the way to California for surgery?
• Links to many other articles, blogs, support groups, and resources on the bottom of this blog

Tagged as: doctors, Doctors who don't use mesh, Dr. Raz, Featured Doctors, find doctor, full mesh removal, help, hope, mesh complications, mesh removal, mesh survivors, partial mesh removal, Pelvic Organ Prolapse, Raz, removal, Stress Urinary Incontinence, success stories, surgical mesh, travel, UCLA

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