To Mesh or not to Mesh
Scream! Scream loud! That is how I feel today. What the hell has happened to this world? Why are women left alone to deal with their injuries by family members who are supposed to love them? That is just one of the questions that constantly comes into my mind when I hear their stories. Mothers who do not care about their daughters. Husbands who give up on the long marriages because they just don’t believe in a woman’s intense pain even when confronted with huge surgical scars. Daughters who only think about themselves and have no time to help their mothers. What is wrong with the values of people these days?
If you are a woman who is seeking answers before you have any surgery and you found this blog, then I can give you a hundred medical reasons who not to have mesh put in your body. But as for personal reasons, there are a million.
If you are thinking to yourself that finding a doctor who won’t do mesh in your surgery, or travelling far from home to have your surgery, you have no idea as to what can happen to you once mesh is in your body. If you think you are loved by those you are close to, you may find out otherwise. Now I am going to let the words of one woman tell you what it is like to live with the hell of mesh consequences. Personally, financially and in any direction it is a road to Hell! This woman is only in her early fifties and has lived in mesh hell for now her fourteenth year because no one wanted to take responsibly. Dr. Raz removed it but the consequences of long term mesh had already taken its toll. But she is better than before removal and is still living her life while hampered by huge bills and major pain. These are her own words. You should know she was in her late thirties when mesh was put into her and she was a school teacher.
“Hi Linda, I wanted to touch base with you and everyone out there again! I was reminded of my need to after I had recent contact with the dear friend of mine and yours also that I met through her mesh removal surgery on the same date I had mine which was in Oct. 2012. She had had a mesh bladder sling less than a year but she couldn’t sit from DAY ONE. She is my age and when she and her family opened their hearts and home to my husband and I for the long RV trips we took which involved 4trips in 2012 and 2013 for 3surgeries. Even though she had her mesh less than a year it was STILL a major surgery from her and the mesh had migrated to places it is NOT supposed to as many of us too well know! BUT when we heard from her not long ago she said she is NOW able to almost sit normally and back to the amount of normal time to be able to sit! She can do most things she used to do before the mesh invaded her life so badly! She was religious to do physical therapy etc. and admitted her first 6months involved being on a couch most of the time but she bravely kept fighting and trying and is now back to almost all her old activities again! A true ray of HOPE especially to those who might be severely affected by mesh they haven’t had YEARS and YEARS! Or just anyone who like her might be able to have it ALL removed every tiny BIT!”
A note from me. I do know this other woman well and met her when I went out to UCLA for my own mesh removal. She could not sit and was having removal one week after me and had just arrived in California. She had come to see me at my hotel as it was two days after my surgery. The mesh had damaged her pudendal nerve and although she is better from all the therapies, she told me herself that to live her life, she still takes pain medicine to be able to sit for short periods. You MUST know this has happened to MANY other women. These ‘simple’ surgeries can leave you devastated for life!
“I have said before and will again the first time I saw her and her whole lovely family welcoming my husband and I with welcome arms I stepped out of our RV and had to use a cane to assist me to walk. She took a look at me and after giving me a genuine hug of love and concern she said “Oh my Gosh you are ME in 12yrs!” Because she like me experienced not being able to sit from DAY ONE after the surgery that put the mesh in her. I hadn’t had my ability to walk affected until a few months before my mesh removal surgery. Our first visit to Ca. was June 2012 and by the time I had it removed Oct 2012 my right leg had started stinging each night and later would give OUT under me and I had to resort to using a cane after I fell a couple times! BUT the very next day after Dr. R. removed my Mesh and all the growths it made including the newest that was invading my right leg nerves and muscles, I found I could WALK again without the assistance of a cane! In fact when my husband drove me back to our RV after the surgery he was trying to give me my cane and assist me. BUT I was still somewhat under the effects of the medications from the surgery and I just got out of the car and walked straight back to the RV with my husband running after me with my Cane! The next day when I woke up I did reach for the cane but realized I didn’t need it. She and her whole family were amazed and marveled at the miracle God had done through Dr. R.s experienced hands and wisdom.
When I was there the first night BEFORE surgery at her parents’ house they invited us for dinner and she lay on the floor and ate her dinner. She is agile and petite and was in good physical shape other than her inability to be able to sit. So she was and is in better shape physically that me! I joined her eating on the floor that first night. I am SO GLAD to hear her life has almost returned to normal in every way!
I am truthfully thankful to have kept contact with her and she and I will always be close because of our shared experience as I am to you Linda. Perhaps since I have last posted I haven’t said that I have been able to find a GOOD family Dr. who is female and I switched to and my husband did also. Previously he and I had used the same family physician for YRS. Nearly 30 years for me because when I first started seeing him my children were young at least one preschool and they both are in their early 30′s now one will even turn 35 soon! OMG! (That’s when lying about your age does NO good!) Although the way my life’s been affected physically and socially I live the life of someone MUCH older although there are MANY people older than me who keep quite active and lead happy fulfilling lives!
My old Dr. had fought me every step of the way when it came to me finding out the knowledge that what I had suspected from DAY ONE back in 2001 when the mesh was put in me during another surgery without my knowledge. The knowledge I always knew my physical symptoms which became worse and worse for about 12yrs were FROM the MESH SLING as I had always thought they were from DAY ONE! But since I had met Dr. R. and was having all this information validated and as he did my exams and reassured me I WASN’T crazy and as he said I had been through TOO many Things-TOO many times-For No Reason at TOO young an age. I had all those years of Dr.s treatments and surgeries tell me it was EVERYTHING but that- with one Dr. even asking my husband before a surgery if I WANTED to get well!?!?!? My husband was QUITE irritated to say the least and told that surgeon to go to different floors of the clinic and check with the Dr. who did Neck fusion of two ruptured discs in my neck and also check with the Dr. who did carpal tunnel surgery on BOTH my hands and arms. AND TO ASK THEM both that same question because I came through all those surgeries FINE and with the expected outcomes!
So I also had my own personal Dr. fighting me ever since Dr. R. was involved, telling me once before a trip that THAT Dr. better fix me THIS time because he would NO longer prescribe any of the medications he recommended! EVEN after all the surgeries were done including my Inter-Stem I then sat down with him FOR one last attempt to OPEN his mind that was CLOSED to Emails and personal PHONE calls Dr. R. made to his office.
I had him read the post op report Dr. R. made of my Mesh Removal which he described as having to take 2-3 times the usual amount of time because of ALL the many years the mesh had been in me and all the growths and ways in had entangled and in some instances BECOME Growths and part of organs etc! How Dr. R. described it as VERY, VERY difficult those were HIS words! Up to that point and perhaps still? I was the patient who had had a mesh LONGER than any he’d ever operated on!
My former Dr. read the one page report that explained the WAY IT WAS in no uncertain details. He just looked at me and said “SO WHAT?” I knew THEN this WAS the end of our relationship as patient and Dr.
God led me to find a KIND female Family Physician who has had NO problems with prescribing the pain medications, the amounts recommended and the other type medications prescribed to help keep infections away including over the counter Vitamin C and Cranberry extract to go with them! She just looked over my THICK files and said “If ANYONE had a need for these medications it most certainly is YOU!” I have to continue to take them PLUS use my Inter-Stem to be able to do the sitting I can do for a little more than 1hr at a time. Doesn’t sound like much but I had not been able to do that for YRS! And it means I can get out of the house to do SOMETHING other than a Dr. Visit now on occasions!
It takes every bit of both the Inter-Stem and the Pain Meds. I have to be VERY careful to not push it past that time limit or I pay for it with MORE pain and less ability to move or do ANYTHING for 1-2 days! I’ve learned that the hard way. For instance I have a treadmill we bought a new belt for. I am trying to use it some so that by the time SPRING PRAISE GOD! gets here again and we can re-open our pool I will be able to WALK out to it to swim! LOL.
Seriously if I just listened to the pain and many times wanting to feel sorry for myself I wouldn’t try at ALL. And I’m ashamed to admit that no matter what there are still DARK days when I cannot make myself emotionally TRY to do things physically!
But I’ve worked up to 30 minutes a night on my treadmill. I still have times when the right leg that had the mesh growths in it stings at the area where they were located. I, many evenings have to rub a pain ointment on it or put a heating pad on it. I found that out when trying to start walking on the treadmill and build up the time I was on it a bit at a time.
Last week I was listening to something on my I phone while walking on it and lost track of time. Instead of 30 minutes I went 40-45 minutes and just THAT difference made the next two days MUCH MUCH worse! So my body has its limits and I have to slowly work up periods of time I can exercise PLUS sit! When we go to church I have initiated our new Pastor and told him that I WILL occasionally have to stand up and lean against the back wall. I’ve told him it has NOTHING to do with being bored about the Message I’m thrilled to hear it, the wonderful BLUEGRASS music our church has weekly now and to be around REAL people for that hour or so!
I just get up sometimes because I still have times my body tells me YOU better or you WILL pay for it. So he was told don’t pay attention to me holding up the back wall! If I was BORED I’d LEAVE instead of doing everything physically possible to stay. LOL! My husband is no longer embarrassed if he EVER was and if he sees me squirming more than usual he always ENCOURAGES me to stand up a while!
So I have found a NEW personal Family Dr. who my husband and I both like very much. My old Dr. had told me if I left I would have to go to a PAIN clinic for the prescriptions Dr. R. prescribed me to take daily. I had been to one before and KNOW why they are called PAIN clinics. Because THEY MAKE your life with them a NON ending PAIN! I found a new urologist who was trained in the Southern Ca. Area and has done Inter-Stems HIMSELF and knows personally of the fame and talent of Dr. R! His assistant is experienced at programming Inter-Stems PTL!
I like the new urologist and he too told me I would probably have to go to a PAIN clinic when he heard of my problems with our family Dr. In fact he already had made a call to one pain clinic referring me to it. OF COURSE it WAS THE ONE I had went to a few years back who I GOOFED up their computer system because I had tried to reach a human being on a Friday! They had gave me a new pain med I found I was allergic to and I was having SEVERE symptoms! I found out WHY after talking to my Pharmacist who said it contained what I TOLD the PAIN clinic I was ALLERGIC TO! But it was an expensive NEW drug and I had NO IDEA! BUT the Dr.s should have KNOWN!
THE only way their clinic had to contact a HUMAN was through their computer patient program. Because I was in Double Agony and couldn’t remember my password I was unable to get in and tell someone to CONTACT me ASAP! SO I then found I WAS able to make a NEW patient file and contacted the Dr. I saw and left a message like that! The next Monday when the Dr. DID have someone call and I did go right into the clinic one of the nurses asked me HOW I was able to contact the Dr. when I told her I forgot the password?
When I told her I made a new patient file she said “THAT”S impossible!” Only she SCREAMED it NOT said it and it was in front of a large waiting room full of people. I said “Well I’m sorry but I WAS able to do it and that’s how I contacted him.”
She kept SCREAMING and going on about what she would have to do to FIX their system and I made sure THAT day was the last one I went to their Dr. I was able at that time to talk our old family Dr. into changing meds after I had been on the same one 11yrs and the PAIN clinic had changed me to another old standby for at least 6 months by then. SO thank GOD he did change it at that time.
LONG story a LITTLE shorter THE PAIN clinic my new urologist referred me to WAS AND IS THE SAME PAIN CLINIC I HAD GONE TO BEFORE! Needless to say I shortly received a letter saying they would NOT take me! I can say LOL! because I was blessed to find the new family Dr. we both see now. So God has answered my prayers finding a new urologist and a new Family Dr. who is on board with Dr. R.!
The only small? THING is that my new urologist works in the SAME clinic I heard as the OLD urologist who put the MESH MESS In me 13yrs ago!~UGH!!!!!! When my new Urologist asked the name of WHO put it in and I told him he then said. “YES I know him he works in our Clinic!” *which is a large one!
I told my husband if he ever sees him to be SURE to shove me into the nearest room because I HONESTLY don’t know HOW I WOULD react and hope GOD never puts me to the TEST! AUUGH!
I still have tiny bits of mesh so tiny they can NEVER be removed and thus will ALWAYS be in my nerves and muscles which is the reason I got an InterStem. I have learned following the over 60,000 mesh cases in the U.S. District Courts that the manufacturer of a mesh similar to mine made their mesh from a “plastic” they bought from a Petroleum Company who TOLD them it was NOT for use inside humans. They have discovered communications of employees telling others to NOT let that “FACT” get out and be known.
They NEVER told the Petroleum company WHAT they were buying the plastic for! But I have heard it is essentially the same type material that is used in the plastic milk jugs milk is packaged in today! NO WONDER the bits of mesh will ALWAYS be in my body! That stuff NEVER disintegrates! Of course this Company wanted that fact to not be used in the trials but the presiding Judge of all of these cases ruled these facts and communications WILL BE allowed into trials! PTL!
Speaking of the cases, the other day there a NEW Article that mentioned it is believed to be a fact that ONE company offered a certain blanket amount of settlement money to be paid for so many of the many cases against them. This MEASLY amount they are speaking of would only amount to about $40,000 dollars for each victim! Like throwing ONE penny to them!
Not only is that amount not even a drop in the bucket for what is owed for medical expenses already accumulated for the average mesh sling victim but also wouldn’t TOUCH the amount of future care, surgeries etc! In my case we had to max out our credit cards, sell things, vehicles, and houses and scrap metal the last trip!
Interest has kicked in full gear on our credit cards AND we still have medical bills we are paying on by the MONTH! We are in WORSE financial shape than when we both married each other almost 20yrs ago. Back then both of us having custody of our kids while our Exes left us bills and NEVER paid child support or any bill they owed! It was the same truth for my husband’s EX and My EX!
Out circumstances NOW are WORSE than that financially. Where just a few years ago we had survived having to stop working because we are BOTH physically disabled and on disability and thank GOD partial pensions for us both. BUT we even got through that and were doing OK until we had to take the 4 LONG trips out of state for me to see Dr. R, (which was STILL worth every penny although we get overwhelmed often!) We had to buy a used RV so I could ride out there NOT the way I did the first trip which was lying in the back of a regular van on a blow up mattress staring at the ceiling. God blessed us to find a good USED RV that made the other 3trips. So travel for me and in SOME ways for my husband was SO much better.
Although I know it was extra pain for my husband to drive that large a vehicle, we had to take many more stops and MORE days than the average adult because my husband can only drive so many hours because of HIS disabilities. SUCH as his back with herniated discs of 30yrs+, his arms that have had carpal tunnel surgery that did him NO good because afterwards he was diagnose with TENDONITIS, he also he has had the same neck fusion as I had a couple years after I had MINE! (We joke that one of us can look right better and the other left better so we need to be on the correct sides to travel! LOL.) But in reality all those ailments and I can’t forget the SHOULDER surgery he had ALL make driving a tedious and physically hard task for him.
So all this said and I know MANY OTHER victims have similar or WORSE stories by far all prove this first “offer” is a JOKE a BAD ONE I hope the attorneys and Judge Notice!.
I close with my disgust at what one of the attorneys for that company who manufactures mesh sling and products said! AND I quote directly from the articles I read, the representative said “THEY WERE PAYING THIS GENEROUS (NOT) amount SO THEY COULD BUY THEMSELVES SOME PEACE AND ABILITY TO MOVE ON DOWN THE ROAD!!!!!!!!!!
I about GAGGED he had the NERVE to UTTER those WORDS! WE ALL can only IMAGINE being able to buy PEACE and ABILITY TO MOVE ON DOWN THE ROAD! May GOD make HIS PRESENCE known to these PEOPLE It will take HIM to get anything through to them IF THEN!
Just look at recent articles about one of the smaller companies offering a blanket settlement amount for many of their clients and you will SEE these WORDS in print for yourself! I can only PRAY the attorneys REFUSE this amount, don’t even CONSIDER taking it to just pay themselves.
PLUS the clients could possibly have to pay or perhaps NOT have to pay out of this MEASLY shameful amount not only the attorneys but there is ALSO the very real fact there was a committee recently formed to deal with all the claims MEDICARE will be making to be REFUNDED out of any monetary “awards!”
I thought to myself IF clients take this amount they could end up OWING more than what the settlement PAYS them!- because of MEDICARE wanting their money back for medical treatments, prescriptions and SURGERIES! MAY GOD help us ALL!
IF anyone out there is politically savvy enough to be able to understand how we could possibly all sign something or create SOMETHING to make the politicians AWARE of all these dealing which SHOULD BE FRONT PAGE NEWS!!! Please pass the WORD!!!!???
Of course many people that have NOT had to deal with Mesh Messes have NO idea the monetary amount involved never the less the emotional havoc and changed lives of the victims and ALL their loved ones around them!
I keep trying MOST days, I don’t let myself be dragged down into the deep holes of Depression MOST of the time.
I try to see the LITTLE things and blessings BIG and SMALL! I try to look at the crocuses covered with snow but still pushing up through the ground KNOWING SPRING IS COMING!
Our granddaughters spent the night with us last night. The 2nd time we had BOTH, our oldest who is 7 and her sister who is nearing 3! The younger brings the reality of how much better shape we were even 4yrs ago when we dealt with the older granddaughter one day a week since she was quite small when her Mother worked one day a week for her old boss who later retired!
My oldest granddaughter is TRULY understanding, MUCH more than MANY adults. She has drawn pictures of encouragement and wrote LETTERS for each of my long trips that I displayed on the RV wall above my bed! She gets her “projects” or whatever she is playing with and many times brings them into my BED when I am having to not sit.
SHE understands WHY I take the medications etc. SHE loves me unconditionally and doesn’t mind I am many times reclined in my bed. She still remembers the much more frequent walks we used to take and she like me looks SO FORWARD to Spring and our re-opening our in-ground pool an old one that we were able to clean and use again at our home.
BECAUSE it is FUN for her and it provides times when I am in it I HAVE NO PAIN WHATSOEVER! EVERY time I AM IN A pool I HAVE NO PAIN!
It has been like that since DAY One. One Dr. said because my nerves have NO PRESSURE on them. I truly believe that being able to take the mini vacations from PAIN so many months a year is what has kept me SEMI sane! I am OVERDUE for another one!
I get IN THE pool, the PAIN leaves and my mind and soul and body is re-booted. I can make wishful plans to do SO MANY things only to have it all erased the minute I get OUT OF THE pool!
Plus I do physical therapy exercises in the pool. I WOULD ENCOURAGE ANYONE who has nerve/muscle pain from MESH to at least give Hydro therapy or WATER THERAPY a try! Even if you can’t swim if you can get to water waist deep and stand up you too might find an OASIS from pain.
I would encourage all those with pain to give it a try! WHAT do you have to lose!? You might have SO much more to gain! Even getting in a warm tub of water (for me) does NOT in any way come close to standing in a pool and moving around in one!
BECAUSE my body’s most trauma-sized area is right against the hard bottom of the tub and I am having to sit with my legs out!
SO find a pool if it works! PERHAPS? Buy one of those BLOW up ones if your trial works! Your mind and body will thank you for it if it works for you which I pray it does to all who try it!
Please forgive me as usual for any repeated ramblings I may have done. IT is all written out of love and concern for all!
GOD BLESS YOU ALL! ESPECIALLY YOU LINDA!
I have looked to your strength and courage many times when I wanted to just QUIT trying and give up!
Plus my granddaughter who gets in bed and tells me “IT’S OK Grandma! I can stay in here with YOU!” And she always tells me how she is always still praying.
With support like these I HAVE to keep trying!
GOD BLESS YOU ALL! HAPPY SPRING! RR”
This woman has kept us updated on her situation and I knew you would want to know how she is doing. To read more, go to this past blog. http://meshangels.com/2013/07/living-with-the-interstim-implant