Deb Who?

UPDATE:
I’m sorry, but I am not active on this blog anymore. I had to take a step back to focus on my own health and family’s health.  I am doing well, all things considered, but I just couldn’t keep up with this any longer.  I do try to check in and may post periodically.

If you are thinking of getting a mesh implant for any reason – know that doctors are STILL implanting the same type of devices that are causing all these problems.  They are NOT off the market.  There may be newer ones – but, if they are made out of polypropylene, they have the same potential do cause major complications.  SEE: https://meshmenot.wordpress.com/2015/05/31/are-you-a-good-mesh-or-a-bad-mesh/

If you are dealing with mesh complications and looking for help –  there are many other support groups now for those dealing with mesh complications. Please see this post  & THE LINKS AT THE END OF IT to more resources and groups: https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications

=====2014=========:
Hello, my name is Deb and I am the author of this blog.   This is a personal blog regarding surgical mesh complications.   I seriously debated on creating this blog, and sharing my experience with mesh complications after having surgery for SUI (Stress Urinary Incontinence).   For one, I am suffering from mesh complications myself and everything is an effort these days.  Secondly, lets face it,  things like SUI (Stress Urinary Incontinence) and POP (Pelvic Organ Prolapse) aren’t the easiest things to talk about.  But, I think it’s very important to share this information.  I get into my main reasons on the “About this Blog” page.   I also happen to love to write, am good at researching things, and am a bit of a computer geek –  so I felt like this was something I actually could do to possibly help others.

As I also mention on the “About this Blog” page, in more detail – I am NOT a doctor , and do not have a medical background.  I have worked in a university for years, where I became adept at research (amongst other things) – but no, I am NOT a medical professional, or an expert on such issues.  I can not, and do not offer medical advice.  What I can offer is my story, and my opinions that are based on my own experience and  research.    Research that I’ll also share here along with any of the resources that I’ve found helpful, and to back up my opinions as well.

You’ll find links to the FDA warnings, medical journals and more here.  I don’t expect anyone to just take my word on anything.

Other facts on me?

I live in Upstate NY, where I have been married for going on 25 years. I am a mother of two great boys (13 & 18).  I am now, 49, but often feel like I’m trapped in a 90 year old’s body since having a simple mesh tape implanted for SUI.  Hopefully, that will change soon,  Like this blog, I am a work in progress!

So What’s My Mega-Mesh-Mess Story?

I had a Monarc TOT(transobturator tape), which is a type of TVM(transvaginal mesh) implant, for SUI (Stress Urinary Incontinence) in Feb 2012 (sheesh, there are a lot of acronyms for this stuff, eh!?).   My symptoms primarily consist of having a severe left hip/leg/groin/pelvic pain that stems from the left obturator area, and then goes out and down my left leg.  My lower back is also greatly affected.  I have had chronic pain, difficulty walking, and even sitting upright.

While some women do not have complications until years after mesh is implanted, my pain was immediate and then progressed rather quickly.   By July 2012, I was using a crutch just to get around at all.   Pain medications became the norm.  Basically, everything became an effort and my whole life was thrown upside down from what I thought would be “minor surgery”.  After a lot of pain and various doctor appointments , I eventually heard of  Dr. Raz at UCLA through my own research online.

I was fortunate to be able to make it out to California for surgery.  I had the TOT mesh sling removed by Dr. Raz at UCLA in Jan 2013.  The removal surgery was not easy, but went well.  Dr. Raz was able to remove my entire mesh sling – 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 she was wrong.  I had talked to women online about Dr. Raz, and knew he had removed many mesh slings in their entirety.  I made the hard decision to go to UCLA, at least for a consult. The consult helped me make my decision to go there for surgery.

Wait.  You are from NY, but went to UCLA for Surgery??

Yes.  I did.  I wound up making three trips out to see Dr. Raz at UCLA, actually.  One for consult.  Again for testing and surgery.  Lastly for a follow-up.  I live in upstate NY.   I traveled twice by myself, and once with my husband when I had the surgery.  All three times I used “wheelchair assistance” in the airports, which I highly recommend for anyone traveling that has difficulty walking!.

• Pictures and more information from my trips to UCLA for mesh removal (click here).

Going all the way to CA for treatment for my mesh complications was not easy.  I am not rich.  My initial response when someone suggested this to me was the same as many other women 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 have a partial removal by someone locally, which I not only didn’t think would help but I feared would make things even worse.  Or I had to travel out-of-state to one of the few doctors I heard that MIGHT be able to help me by removing the mesh in my thigh/groin.  I decided that if I had to travel, I may as well travel to “the best”, and that is what I did.

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

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.  I know my determination was only part of the equation.  I was also very fortunate to catch some breaks.  I had decent health insurance.  We also had unexpected help in the form of donated airline points from a friend – this was quite a gift.  My husband and family were very supportive and that made things so much easier.  Then, there was all the wonderful support and information I found from strangers online.  People I met in online forums and websites.  Many who I now consider very good friends.  My many thanks goes out to so many who helped me through such a rough time. (Click here for more information and pictures from my trip to UCLA)

I feel like I am much luckier than a lot of women suffering from mesh, and my heart goes out to them.   Dr. Raz  is a miracle worker, and he and his associates at UCLA can do things that other doctors will say is impossible.   I know, because he removed my entire mesh sling after I was told by local doctors that it was impossible to do so.   Sadly, even Dr. Raz cannot undo permanent damage once it’s been done… and there is only ONE of him.   There are a few other good doctors stepping up to the plate and helping women, but I can only really speak from my own experience and I have nothing but good things to say about Dr. Raz.  I have talked to numerous other women who also went to him, and have yet to hear anyone say anything bad about him (other than it’s hard to get in to see him!).

Life After Mesh Removal

I had the entire mesh sling removed by Dr. Raz exactly 11 months after it had been implanted, in January 2013.  The surgery report confirmed what Dr. Raz suspected, which was that the mesh had eroded through my obturator and abductor muscle tissues, attaching to my pelvic bones (no, it was not supposed to be there).   Dr. Raz had to scrape it off my pelvis and pick it out of my tissues.  There was more damage to my left side, where most of my pain is.  This was not minor surgery.  The pathology report showed that I was having FBR (foreign body reaction) to the mesh implant, which causes chronic inflammation and pain.

I am doing better since having the mesh out – much better.  It was a very slow healing process, but pretty much immediately after surgery I noticed that the constant, 24/7, sharp, jabbing pain I had in my groin/thigh was gone.  That alone was a HUGE plus.  That pain had made it impossible for me to hardly move, or sit.  I use to say it felt like I had a steak-knife inside my groin, that constantly was hurting, and would hurt even worse when I moved.  That constant pain was gone.  However, it took months for the incisions to heal and before I could get up and around at all.  Considering how intensive the surgery was, and how much damage was done while I was waiting for mesh removal, I was told that this was understandable.  In my case, I could barely walk before the mesh removal surgery and could hardly sit either.     My spine & hips were all out of whack from limping and using a crutch for several months. That doesn’t just go away overnight once the mesh is removed.

Myofascial Release Therapy can help with chronic pelvic pain

I had to wait three months after the mesh removal surgery before I got the ok to start Chiropractic treatments and Physical Therapy.   That was because of how much damage was done before mesh removal, and since it took so long for my deep incisions from the removal surgery to heal.   For PT, I opted for Myofascial Release Physical Therapy.   I would highly recommend this type of treatment to anyone suffering from pelvic pain from mesh complications, or otherwise.  Walt Fritz , a Physical Therapist who practices Myofascial Release therapy, may be able to refer you to someone in your area and you should feel free to contact him.

For a few months, I was making slow but steady progress and was feeling much better than I did before mesh removal.   I was eventually able to sit upright comfortably again, and was able to get off all pain meds.   I went back to work, despite the fact that I was still needing to use a crutch or cane to walk due to pain.   I fully expected that within a few more months, I would be fine.   Perhaps that was wishful thinking, because unfortunately, my progress came to a halt.   Several months after mesh removal surgery, I am still using a cane or crutch to walk.  It only hurts really badly when I try to walk.   Originally, it was thought that I could have some nerve damage.  There was also a chance that my newly diagnosed hip dysplasia was a factor.

Mesh Campaigners at Scottish Parliament

I was diagnosed with mild hip dysplasia when I started complaining of pain after the mesh implant and was getting bounced around from doctor to doctor.  However, another doctor did not agree that I had hip dysplasia at all.  At that time, it wasn’t clear if my pain was from the mesh alone, or a combination of both the mesh and the hip dysplasia.  Prior to the mesh implant, I never had any problems walking or any inclination that I might have hip problems of any kind.  I also heard from many other women with mesh complications who had trouble walking – that were not diagnosed with hip dysplasia.  Doctors indicated it was hard to tell what my exact problem was, because the obturator is right by my hip joint.  Xrays and MRI were not real conclusive.   An orthopedic doctor told me they thought the consult with a specialist on mesh was a good idea as he was not familiar with mesh, or the urological procedure I had done.  A local UroGynecologist told me they thought the mesh must be the problem, but that they only could do a partial removal, and “see if that helped”.  Eventually, I went to Dr. Raz, who seemed very certain that the mesh was a problem,  that is needed to be removed, and that he could remove it all.

Now, with mesh removal behind me, there is no doubt  that the mesh WAS the problem.  I know I feel much better now than I did before having it removed.  I also have the pathology and surgery reports to prove how it had eroded through tissue, attached to my pelvic bone, and caused FBR (Foreign Body Reaction).  However, unfortunately, it looks like I now have to deal with the hip issue separately and that some damage was already done.  (ugh!)   I heard  that because of all the inflammation and mesh complications, it may have brought other problems to the surface as well.   I know mesh complications, in general, often snowball into other problems and diagnoses.  Regardless of the how, or why, I am just taking it day by day and will do whatever I have to do.

Oh, & my “original problem”, the SUI, did NOT return.  It’s funny how many people ask me about that.  Well, it’s not funny that they ask, but how they ask.  They will lower their voice and whisper the question with a deep look of concern.  As if SUI is somehow worse than all my other resulting problems.  Just for the record?  I’d rather have SUI any day than go through all the other problems caused by the mesh used to “fix” my SUI!!  Turns out, that it’s no longer an issue for me.   Contrary(again) to what local doctors told me, Dr. Raz told me that in my case, I had about a 50/50 shot of my SUI returning after mesh removal.  Local doctors told me my SUI would absolutely return, and again they said it as if it was the worst thing on earth. They also offered no solution for it other than putting more mesh back in (no thanks!).  But, Dr. Raz told me that IF my SUI did return, I could go back to him in a few months and he would repair using a sling of my own tissue.  This is an option I WISH I knew about before I had mesh implanted.  I could have just had the SUI repaired like that in the first place! At least if your own tissue “fails”, you do not need to worry about mesh erosion complications.

I only post my story, with the hope that it may help others going through mesh  complications, or help those who may be considering having surgery for SUI or POP.  I think it’s important that people have facts to go by,  not just personal stories – so, I am including links to any resources and articles I’ve found helpful.  I will post Updates to how I’m doing periodically in this blog as well.

Take care,
Deb

==============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
• 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
• Links to many other articles, blogs, support groups, and resources on the bottom of this blog