Update on Twelve Years of Mesh Hell

Yesterday once again over the phone, I laughed with a woman I wrote about recently.  Her laughter is infectious and full of hope for a better future.  I will post the link to that blog at the end of this blog to refresh your memory about what she has gone through for twelve years.  But now there is important and happy news to share with you.

SHE IS MESH FREE!  Dr. Raz removed her mesh one week after he removed mine and it was two weeks ago for her and three for me.  However, this blog is not about me.  One woman contacted me recently and asked me is it possible to remove mesh after it has been in her body for over fifteen years.  After my surgery, Dr. Raz was checking on all his surgical patients of that day and I asked him that question.  He said yes it is!  I then told him that the following week he would be removing it from a woman who contacted me earlier this year, and had it in her body twelve years.  He could not bring anything up to me of course because of patient confidentiality, but when I gave him her name he recognized it.  So, if you have had it in your body for many years and you are having serious health issues, there is hope.

My conversation today with this lady brought me great satisfaction.  No nothing is perfect because of so many LONG TERM complications that continue with mesh, but she is so hopeful of a better and brighter future.  It was a difficult removal because the mesh had wrapped itself tightly around her urethra, strangling her.  He told her it was about the thickness of her small finger, wrapped around her urethra.  No wonder she could not sit.  However, he got it out without further Injury.  He did tell her that the screws that held the mesh were grown over and he thought it was unwise to push her body by doing too much at one time.  So he told her to give herself 6 months and if she felt they were still causing problems, he would go back and remove them.  You should know that it took him two hours of removal to give her back a chance of renewed life.  It was the same for me.  For this lady it was a revelation.  “One man could remove her life sentence in two hours”.

Dr. Raz never risks women’s lives.  Although he is the master at removing mesh from women’s bodies, he knows when it is time to give them a break.  Most women have it all removed the first time just like I did, but those with long term, serious issues or many pieces and types of mesh in their bodies, have to have more than one surgery.  It is better to do that, than lose all the blood in your body because of hemorrhage.  This man knows what he is doing and as long as I have been helping women, I do not know of one who has lost their life under his amazing hands.  That gives me great hope for many more successful removals.

Now this lady has a chance at a better life again.  Before removal she had been using a walking stick because the mesh had hooked itself into her nerves.  That is what is happening to so many of us as the mesh migrates and shrinks.  She told me she is now walking without the stick, even though she has a long way to go to walk as normal.  She also said that for a long time pain medications did not work no matter how much she took.  She still needs pain meds for awhile until she heals, but she said they work now and she can enjoy the simple things others take for granted.  While driving back from Oklahoma, her husband stopped at a Denny’s restaurant and while on pain meds she actually sat at a table and ate a meal.  She felt elated because it had been a long time coming.

So remember.  Regardless of how long it has been in you, you do not have to suffer the rest of your life.  Find a way to get out to Dr. Raz or to one of the other two women surgeons at UCLA.  Ask family, friends or strangers to help you do the fund raising to get you there.  You may be surprised at their response and what they will do for you.  Don’t be shy.  ASK!

Now here is the blog I first wrote about this woman.  http://meshangels.com/2012/09/twelve-years-of-mesh-hell-now-a-light-of-power

Reply from the lady herself.

Hi, This is RR the lady who was the subject of 12yrs of Mesh Hell. I am SO grateful to have got a CD of the Translabial ultrasound that was done on me right before my surgery. I really did not look at it very well OR the operative reports until I got home. TO SEE the mesh was SOMETHING ELSE and I saw a large BLACK HOLE on the left side it looked to me like and a slightly smaller black blob on the right side that had started growing into my nerves in my right leg and causing spasms, weakness and then the need for a cane the last 6months.

When I lost the ability to walk after suffering for 12yrs not being able to sit from day one and the last few years laying down did not help at all I truly sometimes saw NO reason to keep living. Then of course my granddaughter would visit and would climb up into bed with me and say she WANTED me to get better and how she was praying for me. Or I would see some of the rescued cats snuggling against me and knew THEY were glad I was here and accepted me like I was. EVER grateful I had rescued them from awful people who dumped them on us and gave them a new life and home. It was like a personal parade when we came home after two weeks out at UCLA with all our animals greeting us and not wanting us out of their site again!.

And like Linda said the strong pain meds were at the point for years they barely took the edge off.  But it doesn’t surprise me as much as it does my family doctor and think if he WOULD read the surgery notes he would understand more. He has suggested if I continue to run a fever to go to ER or somewhere to see what is wrong.

But I personally think getting LOADS of material taken out of you that has grown into muscles, nerves etc. AND lots of INFECTION IS going to take some recovery.  But I WILL have further evaluation if the fever continues-yes I am eating plenty of yogurt to combat the bad effects of the needed antibiotics!

So those HOLES I saw on the scans were fibrous masses that had grown over the yrs and taken a life of their own plus the mesh! Dr. Raz said it was a very very difficult operation and I am so grateful for that man and his amazing intelligence and gift which can only come from GOD. I knew it must have been long and tedious to remove the mesh.

Dr. Raz prescribed me a similar med I have taken for pain and allowed me to take 2 every 4 hours. For the FIRST TIME EVER they worked! I am OUT Of Intense pain some hours of the day and can do a little more each day. When the pills wind down I feel pain but not the type I did when having the sling all those years that wrapped around my urethra and took on a life of it’s own.  TRULY A TORTURE DEVICE THAT I AM NOT EMBARRASSED TO TELL ANYONE ABOUT!  

The pain now is more like the pain I had before the hysterectomy, Before that awful sling. I know I have been cut and I am healing but it does not feel as if metal spikes are poking you which they WERE when I sat down, before my removal surgery.  I now hope to be able to heal and require less pain meds.  At night my leg still spasms and hurts yet when I get up off the bed and the circulation starts, I can stand and walk!  I think because it had affected me in the leg only the last 6 months, I got to Dr. Raz in the NICK of time to save the use of that leg.

While in Los Angeles, we stayed with another woman who had her surgery the same day as mine in our RV, in her family’s front yard.  Her family was like my own family waiting was for me and no words can describe the thanks and gratitude that God helped us find her through Linda’s efforts and her generosity. Ruth is about my age only had her sling for less than a year and from day one after surgery, the main problem she had was that she could not sit any more.

When we arrived at her family home, she sprinted across the yard when we pulled in and as I came out with my cane we hugged and cried and she said “OH MY GOSH! you are what I could have been in 12 yrs without having this surgery!”  Even with her short time having a sling in her, it was also a difficult operation for her.  Her sling had already worked its way into her urethra and she had to have her abdomen cut which was painful of course! 

Her family is Norwegian as my Dad’s was and when I stepped out of the RV her elderly Father said PRAISE GOD she IS NORWEGIAN!  We even share some same last names from the same area of Norway! I hope to get info on ours from a relative to see if we are “related”.  Iwould put NOTHING past the power of GOD!

Her familu made us welcome in SO many ways from the first night before we were to have our surgeries and they all gathered around us and prayed. I have NEVER felt such peace, serenity and love that I did then knowing I would be OK, than I have in my entire life.  It was a bittersweet moment when we did leave her and her family several days after it was over.   I hugged all of them including Ruth’s Dad who was about the age my Father who was Norwegian.

Ruth and I are now MESH sisters. She said wanted a picture of my husband and I and her and her husband despite the fact I still looked like WALKING death.  I knew it was needed to have and keep always and am going to send her a copy plus one to Linda.

So all other sufferers of mesh-PLEASE do all it takes to follow Linda’s advice even if it means selling a car, or a house like we did etc.  NOTHING is precious as your health and it can never be bought at any price.   Believe me from one lady who had a mesh sling less than one year to myself who had it 12 years it can and will many times do irreversible damage to many parts of your body.  Some types of damage  may be quicker than others but it is always lurking inside you waiting to erupt.  I know know for the first time in 12 yrs despite what many said that I AM NOT CRAZY!  I was correct from day one that it WAS THE MESH SLING.

Please don’t put yourself through the going to nutty Doctors and needless, useless treatments they offer, that many times can make things worse or  even cause you MORE pain. I had about every type of treatment known and I think SOME treatments were made up by the DR.s who would not admit they were wrong! BE kind to yourself and ask GOD for HIS help each day, ONE day at a TIME.  It was the ONLY way I survived for 12 yrs!  Some how I kept my sanity and was led to Linda and this wonderful sight.

THE hope is real as is YOUR choice to put yourself first and end the destruction that mesh is doing to your body no matter how long. I will always have damaged nerves and will never be 100%, but they will be reminders of how much worse I became before my removal surgery. GOD IS GOOD! GOD BLESS YOU ALL! RR

What is a translabial ultrasound you may wonder?  Please read this blog

1 Comment

  1. RR

    Hi Guys, I don’t know if Linda updated you or not but I am going back to Dr. R in June for two surgeries. One to attach an Inter Stem Unit to my nerves and wear it outside my body for a week. It will be hopefully hooked up to the pelvic and bladder nerves and help control my never ending pain and spasms some. Becau se even though the pain kill ers Dr. R. pre scribed ha ve wor ked better there still is alwa ys the tol erance factor and fact they will not wor k for ever!

    After I got home I COULD WALK which was a miracle! BUT my pain in my pelvic area and spasms are as bad as EVER. So after months of my own D r. here NOT pre scribing med s as Dr. R. said even though he contacted him several ways D r. R had me take a scan at a hos pital here. Then he immediately called and wanted me back for more tests. So at the end of February we went back and I did have over 4 hrs of tests and my husband got to meet 3 other couples in the same boat either at the beginning or end and most importantly got to talk to their husbands after I went back for te sts. One husband is setting up a support group online for husbands. I was just there a bit before they called me back but you could see the relief and the hope in the eyes of the people there the first time when the stories started gushing out. AND the husbands shared everyday facts of their lives most people would never think of. BUT that was a freeing for them to KNOW some other men had gone through the same thing some worse! all different yet all the same problem! ALL couples credited GOD for keeping them together ONE DAY AT A TIME! Many men would have ran! so the ones there were strong loving men who truly loved their wife in the deepest sense!

    After I took all my tests Dr. R. called my husband and I into the exam room. He told me YES I SEE why you still have ALL THE PAIN AND SPASMS! ONCE AGAIN I FOUND OUT I WAS NOT CRAZY or IMAGINING THINGS! PTL! He said I looked at all the tests and you have TINY TINY pieces of the M es h met al sli ng part s in your nerves that are embedded they can NEVER be removed. He then told me about the Inter SteM device that is attached to your back the first operation on the OUTSIDE of your body with wires going to the right nerves to help the pain, then one week later IF it works it is implanted Under the skin like a pacemaker if not it is removed. I had asked about a D r. I fou nd in a neigh boring state who had int erned with him. They all had good things to say about him and D r, R said he would be good to follow up with etc. It is a 3-4 hr drive for us instead of 1500 miles round trip! BUT I ONLY want D r. R to put the devi ce in, he did after all remove my WHOLE s ling and make me wa lk again with God’s help the very next day!

    Some have asked me cautiously about this device. I KNOW it has risks but I also KNOW I cannot de pend or G et the pa in meds I need the r est of my life at lea st whe re I live! BUT D r. R mentioned it to me the VERY first visit I had with him after seeing all that had been done to me and HOW long I had had a S ling. He told me THAT day it was a R eal possibility.. AND 11 yrs ago my 2nd D r. who so-called tried to Loosen my S l ing tried one on me. it had JUST COME out, he was NEW at doing them and he did not get it hooked up correctly. One side worked the other didn’t. So when he wanted to try again, I said NO! NO MORE SURGERIES! The 1st D r. who put it in had put me through a yr of torture tests and unnecessary surg eries! ,I was getting guardianship of both of my elderly parents. The 2 nd D r. then wrote me a let ter saying I would no long er be h is pat ient!

    But it is good he did not put it in because the me sh wou ld have stil l have been left to grow and do damage etc!

    So O nce again I am putting my faith in Dr. R. and trusting the Lord will guide him. Linda IS RIGHT, HE CAN read tests like NO ot her doct ors can! The
    s can I had her before the re moval I wa s told ev erything was Normal no men tion of Me sh gr owths anything! And the last sc an the s ame report came back and my fa mily doctor tol d me the s ame thing it says Norm al nothing is wrong! THANK GOD FOR DR. R!!!!! My family Doctor had A lso told me bef ore the la st trip “WELL HE BETTER FIX YOU THIS TIME BECAUSE I AM NOT GOING TO PRESCRIBE those pills he wants you to t ake for pain you sh ould be over it! ” It is a shame that this family D r. I have gon e to for a lmost 30 yrs with my kids, parents, husband and took care of us all with G ood care has clos ed his mind so much to something he do es not understand.

    I told him once I am SURE there are th ings you know that D r. R. doesn’t and vice versa. He IS a family D r. and has to know a little about everything but per haps Do ctor ego sometimes pla ys a part. I don’t Know, I Just CARE about getting to the P oint of going back In June! THANKS FOR ALL YOUR CONTINUED PRAYERS! Thanks again to the family in L A who have help ed us and is like family to us such a testament to God’s love! I have started using initials and dividing words after hearing a woman who won a settlement finally but it is St ill being appe aled after several yrs to get it! She talked of how pe ople follo wed her online and OFF! IT IS a shame beca use I try to ST ill share with others.! Wishing BETTER HEALTH FOR ALL-Remember you ARE WORTH IT! Blessings, RR


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