Update on Using the Interstem

I know many of you have followed the story of a woman I have written about before, who has now lived in hell for thirteen years because of a mesh implant. I will call her R. Her journey in the past was filled with tests and surgeries she never needed because all along her pain and symptoms were caused by mesh. However, no one believed her. She was left to suffer a tortured life but she never gave up. Those thirteen years has taken a toll on her body but not on her mind. She still fights on and you will understand as you read more of her story.

I promised you future blogs as I learn things that could help other women. A couple of nights ago I had a call from a mesh injured friend who had hers removed by Dr. Raz almost a year ago. Her nerve damage has not gone away as it has not for many of us, and she still fights to live each day. Her only option right now is pain killers to dull the pain enough to do anything. Her frustrations have been endless and she wonders if there is any hope. So she is researching options and asked me if I knew how R is doing. I told her I would find out so that she and others who suffer so much that it is hard to function, will have some kind of hope.

The great thing about R is she is highly resilient. I must admit I have never known anyone who has fought so hard to live again. If you followed her story, you will know how hard a journey she has had and yet she is still optimistic and gets out of bed. If you don’t know her story, this is the link. http://meshangels.com/2012/09/twelve-years-of-mesh-hell-now-a-light-of-power

Whenever I write to R she always responds. It may take a day or so, but she wants to help other women even though she is unable to do so personally. So when I heard from her I knew she would give me a rough idea of how this part of her journey is going. So here is what she said.

” Would I do the Interstem AGAIN!? YES YES YES! All I have to do is change batteries on my remote and accidentally turn OFF the unit or turn down ALL THE CHANNELS OR TURN IT OFF ACCIDENTALLY some way AND I AM immediately reminded IT WAS WORSE!!!!!!
So far I have been able to turn each channel down to a lower number than I started with and have the same effect. To start with Dr. R. as you know being the genius he is hooked up 8 different leads to 4 different places in my pelvic and bladder area. Four to the right in two places and four to the left in two places. EVEN the Medtronic rep who saw me in the hospital said I would have ONE area on each side affected. We got back to our RV and I was learning to adjust it etc. And found out there were FOUR distinct areas affected. My husband said ARE YOU SURE!?
I said YES I AM SURE IT IS MY BODY!!? Sure enough Dr. Raz told us he hooked up 8 leads to 4 areas 2 on each area so in case 1 came loose you had another as a backup!

To have ANY control on your own pain at ALL TIMES is WELL worth it to me. And I know others have MORE success than I did who perhaps had a sling less time than 12yrs! TO have had 20-25 percent less pain OVERALL! Is very much worth it to me!~
To be able to sit 1hr+ whether I use that time to go for a ride in the car with my husband, to go to church, to go out to eat, to visit the cemetery where my parents are and decorate their graves. TO visit a friend a short time still with my husband driving!
ALL are small things to many people, but each are HUGE accomplishments from me being completely bed bound to not being able to sit more than 5-10 minutes without UNGODLY pain that made it so I could not think of ANYTHING else!

 I had the advantage of at least an IDEA of what the operation would involve since they first tried it on me yrs ago while the mesh was still in me. HONESTLY I tell someone if THEY HAVE gone through Mesh Removal it is not even in the BALLPARK at all compared to that.
And I knew I wanted Dr. R. to do it soon as possible while we are still blessed on earth to have HIM! He knew me inside and out and would be the VERY best to do it and I wanted NO OTHER! As far as an operation, it is a comparison to when I had carpal tunnel surgery OR Major Oral Surgery or something of that nature that you KNOW the recovery from the operation itself will NOT take a long time! The surgeries themselves do not take a long time. THE first surgery takes longer, they told me I would be in a twilight sleep sometimes in case they needed to ask me questions about what part they were working with and what it affected. I remember being awake sometimes during that the first surgery YRS ago that didn’t work and they took the temporary remote and unit out just weeks after because I did not want another operation. BUT I DO NOT REMEMBER IT WITH DR. R. perhaps the anesthetic made me forget or he got in there and KNEW what to hook to! Either way is fine he GOT THE RIGHT spots!

AND it is GOOD that it didn’t work back then. Because if it had and had Decreased my Pain a lot, I would not kept noticing how I was getting worse and worse and more growths and areas were being invaded by my the mesh. And if I let them keep going on I might NEVER had the mesh mess
out until I was past the point I was last yr and perhaps had further deterioration of my bones which were not affected by the screws thank goodness and I might have lost the ability to WALK AGAIN! So even though it might have helped pain way back then it would have been like putting a band aid on a big chunk of foreign material in you that was getting more and more infected and never getting the main part of that material OUT!
It would have perhaps hidden the damage and made me NOT try as hard as I did to make sure I finally found SOMEONE-YOU! LINDA! To show me the right Dr. DR. Raz! THANK GOD!

The first surgery takes longer, and for 2 weeks after it is UNCOMFORTABLE! Make sure you have LOOSE fitting clothes-pants cotton comfortable non itch material! Especially! You have a remote HOOKED to your back with a wire going into your back and you have to put it on your waist with a clip it has. And you have to have a bandage that holds that wire just so that it is not disconnected. AND it ITCHES!!!  because you cannot take the bandage off or bathe that area and mine was done in July and it was unseasonable hot in L.A. So those first two weeks sleeping were NOT fun but manageable.
NOT a lot of pain just irritation and they wanted you to walk around with it asap and take short walks etc. But getting it off my back was like heaven just before they did the second surgery and attached it permanently and that was so GOOD! It was shorter and operation than the first.
They already had the unit inside me in place and ready with leads to attach inside in a way that you use a wireless remote from then on! I was given a handbook with precautions and warnings etc. on what to stay away from.

THE book or pamphlet WAS OVERKILL and had me thinking I couldn’t be at a computer or around a toaster!!!!~ But the nurse told me it was OVERKILL and unless I put the back of my butt up against an electrical transmitter or something else there wasn’t much danger. BUT no more MRI”S or tens treatments like a Chiropractor might give you. Because I was driven out to UCLA from Oklahoma by my husband, I have never experienced the nightmare of check ins on airlines since 9-11 and don’t even want to think of one with the unit which means they need to take your word for it and the ID card you carry for it also or do a body search since you can’t go through their metal detector. BUT I can tell you that it doesn’t set off alarms at Wal Mart etc! NOW there may be some type that do but I Dr. R knew how to set mine where I didn’t have to worry about it!

I also often have to adjust mine when I sit down and stand up. Sitting I have a lot higher reading on the leads than standing up. The first time I swam with one (I love to swim) and turned it WAY down I was SCARED! But then got to thinking heck our body is 95% water it has been in me this long and as soon as my stitches were healed I swam! It did great. I got out of the water and yes IT STILLL WORKED! YEAH! When I go to the bathroom many times I need to adjust it and it calms my bladder. But I am getting more used to the settings it needs for sitting, laying down, sleeping and going to the bathroom. ONE OF THE 4 places the leads are gets to JUST THE RIGHT PLACE where I had the ABSOLUTE most pain!! It is always TURNED UP HIGHER THAN THE OTHERS. EVEN THOUGH THERE IS ONE MORE ON THE LEFT SIDE THAT IS HIGHER THAN THE TWO RIGHT. The ONE left side must be hooked up to the very worst part where the majority of PAIN IS!

I felt down a couple of weeks ago and thought  IS THIS IT?  Am I DOING WHAT I SHOULD OR AM I WHERE I SHOULD BE RECOVERY WISE???? So I called Dr. R. and Dr. N called me. I think she is the one who assisted Dr. R. because she told me 1 1/2 hr is GOOD!!!. She said she remembers my case well and how she and Dr. R. seriously did not know if they could ever remove the left growth and had to go at it from many angles. It was physically tiring on them also- almost 3hrs continuous! ”

Back to me. I will break in here to let you know that the mesh was so terribly fused to her bones over such a long time, it caused areas of severe scar tissue that resembled growths. This caused her terrible pain.

Back to R. “Dr. N said I am doing good considering how far I have come. I have to remember that and that I can walk again BUT I have to be truthful and tell you I still have days when I am BUMMED!  Days I won’t look at emails or answer the phone-Days I let Satan tell me stupid things to try to make me miserable, I then have to seek the LIGHT of the Lord and EXPOSE Satan and tell him I KNOW what he is trying to do and to BUG OFF! All last yr I had HOPE the next operation etc. would change my pain in a BIG way! And now I know this is probably as good as it gets and I have to remember, as my husband has said, that my body has been through 3 operations in 12 months as you know yourself

Good news is I got a regular FEMALE family Dr.         who has been on board with all Dr. R. said about my need for pain meds. Although I was able to cut down from WHAT Dr. R. said. My old Dr. never gave me that much and life was really hard for a long time! This new Dr. agreed all the way down the line with Dr R and has had NO PROBLEM prescribing my pain meds. She saw the HUGE stack of records and operations over the yrs and KNEW I needed them. The InteStem DOES NOT work by itself and just the PAIN PILLS do not work by themselves. I did not want to go to a PAIN clinic as suggested by my old family doctor! My new urologist thought I would have to go to one and that would’ve required a monthly URINE sample to check I am not a drug addict!       I was livid! and thought I AM 55 yrs old! have gone through all this and more 12yrs plus I have all the evidence and paperwork to back up my needing pain meds!!. NO WAY I am making this up. Injured nerves are injured nerves and in my case always will be as I am sure is true for others! So God answered that very pressing prayer and I told my Dr. of 30yrs goodbye.

I have a new urologist who KNOWS of Dr. R. and did training in Southern California and has put in InterStems himself so has an assistant who can check them out, program them etc.! New batteries will need to be inserted by surgery every 8-10 yrs but don’t think it will be hardly anything at all after all the other I have gone through! This urologist I have now, I don’t know if he is entirely against all slings but if he sees me enough times he might very well change ranks!            He knows Dr. R. is a genius surgeon and didn’t question any of his recommendations but knew he couldn’t do the pain meds so referred me to a pain clinic.
I cancelled my upcoming Jan 6th appt with DR. R. being very truthful with them we just CANNOT afford it now if not at all absolutely necessary! But I told them WHEN I can, I will come back. They sent a survey Dr. R. signed himself. Knowing how important it is to them I filled it out and am sure they WOULD like to see me again as I would them! 

So I am thankful each day usually most thankful for finding YOU LINDA.        I have your site on my EBay pg. Some have read it and it has changed their minds. I know of 7people for sure I changed their mind on mesh operations one a young man I told you of earlier.

I hope very much you keep improving, I thought of you when my new urologist told me how hard the slings using your own skin were and recovery etc. We both have to look back like looking at a tree each day you don’t see growth but you compare one yr to the other and you SEE growth despite the storms.”

Back to me. Like many women life is still a struggle for R every day. But even on her worst days she has never given up on life. That is the most important message I can both she and I can give you. The other important part of our lives is that we continue to share the true facts with others so that they don’t wind up living in the hell we have to live in. No one deserves any of this.

I hope this helps women who are trying to determine what to do next because their nerve damage is so severe they live on pain killers even after the mesh is removed. I am fortunate not to be one of them. I do have my good and bad days when walking is so painful and I struggle. But I am still blessed to be able to live.

I know more women will be looking at options for extreme nerve damage pain and I hope R’s honest assessment will be of help for you to decide what to do next. I am fortunate to have a history with some women who truly want to share how they are making it through life, even with all the struggles. These women keep me grounded and make me realize I cannot spend my days feeling sorry for myself. I was given my life for a reason and so were you. You just have to find it.

To know more about the Interstem and find a support group near you, please go to this blog.



  1. teresa

    Linda, it was nice to have a blog of yours to read again. I have missed them but I do understand the need to move on and not be all about mesh anymore. Thank you for everything you have done and leading me and countless other women to Dr. Raz(personally) or to other full mesh removal doctors. You truly saved my life and I will be forever grateful for what you have and continue to do. You were sent here as an angel to help all of us get through this. I hope you continue to get better and give us updates from time to time. I will be mesh free in January 2014 and can’t wait and I will remember it takes time to heal and will hope I can have as positive an attitude as you. To R I am happy that she is getting some relief now. Very inspirational! Love you!

    1. evelyn

      I’m so glad Linda you have this page and I had the test one removed today an I go Jan.22 for the permanent one put in I will have 2 and I was training today how to program it and turn it on and off and how they will be able to read it over the phone ..seems simple enough I know it will take time and I hope I can do as good as you .. but everybody tells me I will be OK. and I know I will Thanks to you..

      1. lavalinda

        Evelyn I hope you will get a support buddy to help you through any worries. I understand they can be in your area and the good thing is, they will understand when no one else can. I hope this will give you a new found freedom.

  2. Robin Robbins

    Once again THANKS SO much Linda to take my rattled words and make some sense of them. For you to say I still have all my wits made me Very Nearly CRY!. Although I obtained a post graduate degree, taught school for almost 20yrs and was even at one time a police officer for a Major City for over a yr. It feels sometimes like the pain had turned my concentration and thinking to MUSH! I find myself writing “books” as my husband calls them when just trying to share some in an “email” and have heard from a counselor I go to that it WILL get better and my thinking clearer when the pain level goes down.

    I also have Adult ADHD and all you out there with that know the battles you face each day alone with just it from the time of being a child to being grown! The world looks like a whole different place to us with a lot of static, like the commercial they used to have with the woman looking around at everything and everyone in her life as if someone was flipping the channel changer on a TV constantly. THAT was the best illustration I had ever seen to what the world looks and sounds like to someone with ADHD particularly UNTREATED ADHD!

    I sometimes thought the pain turned me into a blithering idiot, but my counselor told me that writing is always good therapy. The years of me being almost home bound took a tole on me and so I reach out sometimes too much or for too long and it always helps me get my mind off the pain a little while. But for EACH person who has the perseverance to get through my writings and realize they CAN be helped from the misery they have gone through like me AND MANY OTHERS or be spared from ever having to go through it it is well worth it!

    I also want to add that Inter-Stems were originally made for incontinence so it has also helped me on that level although that was NEVER my main concern. I also want to encourage all those out there with pain damage to PLEASE try getting in a SWIMMING pool at least waist high. YES! A SWIMMING POOL is what I said and KNOW Helped ME MOST and STILL DOES! From the first day of damage MANY YRS AGO to even now when I am in a pool of water I have NO PAIN! 100% PAIN FREE! The Dr.s say it was and is because my nerves would quit spasming with the pressure so much less and my nerves not pressing on whatever they were pressed against! I do Physical therapy in our pool,swim or just move around! You don’t HAVE to be a swimmer. BUT I GUARANTEE IF it gives you the pain relief it does me you will FIND a way to find a pool to get a mini vacation of HEAVEN with no pain like I did or perhaps less pain for you I hope. IT certainly is worth a try for all of you with nerve pain. It CANNOT HURT! TO get that time of complete shutdown of the pain makes you feel like you have re-booted your system, lets you think about something again and will be treasured and even help a bit afterward.

    SO I encourage ANYONE with nerve damage to PLEASE! TRY this temporary solution that may very well have helped save my sanity all those yrs. Not even sitting in a tub would do the trick, it has to be at least waist high so that the affected area is NOT being subjected to the pressure and gravity it is each day in the damaged way it is usually.

    Thanks again Linda for writing a story I can share with others who will read it after they may have been scared off by mine! And to realize I was not alone, and have never been with others gone or going down the same road, with friends by my side physically or in heart like you Linda and most of all for God making Himself known to me each day, He does it through other people, animals, the beauty of Nature and the good things Still in this world that many in a hurry fail to recognize any longer.

    My Father who had Alzheimer’s taught me that lesson well, as he aged and his memory was less cluttered with many things of the past, the more he recognized the little blessings each day the LORD gives us and the more he gave the LORD the credit and Thanks!. A cat purring, a gentle dog putting his head on your lap to be petted, the smell of a new baby, flowers coming up through the snow, the smile of a child seeing something the first time, the look on my Dad’s face when he saw fluffy clouds and told us of how he flew through such cloud many yrs ago when he was a bomber pilot in WWII. He is again above those clouds in Heaven and completely whole and pain free and is flying again! i AM SURE if he wants using an airplane God wants to give him! or just himself! as the Angels do. GOD BLESS you LINDA ALWAYS and everyone! Blessings! RR

  3. RR Okie North of the Red River

    Dearest Linda and all other Mesh Friends. It was just recently the one yr anniversary of getting my Interstim. I wanted to let you know of what has happened this last yr. When I first got the Interstim in the hospital the tech from the company who makes them adjusted the number for me on each of the 4leads I have (With 1back up lead on each) so a total of 8 leads to 4 different places. He was turning up the number on each area. He said “Is that enough?,” I looked at him wondering if it was connected? and I said “NO.” He turned it up again and again and my numbers finally were set at 6 of 7 on one lead and at least 4 or 5 on the others.

    The tech looked at me and said “Are you sure? We don’t want the signals hurting you!” I said “NO I can feel them HELPING-some now!” I later found out having to turn leads up to that high a number is rather unusual. But I was happy with where they were set. I feel with having mesh for 12yrs and the continuing damage it did to my muscles and nerves made it a severe case. So to have the Interstim start working on the injured nerves perhaps that is why they had to be set at that level to start working on my injured nerves that still have tiny pieces of mesh in them.

    But over this last yr I have been able to turn each lead down and get the same results! So perhaps it is somehow calming down nerves without as much voltage needed. The lead that had the number 7 or 8 now is at a 1.5 or 2. the other 3 leads all are around 1. THAT is a big difference! They said that is the aim is to have to use less and less voltage for the same effects. Also my New Urologist who is familiar with Interstems and has an assistant adjust them has now put new programs on them so that now my Interstem has 4 different programs. Such as A which was set when I was in CA. This last yr other programs have been added B C & D for me to try to see if they work better. I am still experimenting to see if any work better. You can’t just pick part of the signals on A and put them with B etc. You have to pick one specific group of programmed leads try them for a while and try to figure out if they improve the decrease in spasms & pain.

    I notice when I sit down it depends on what kind of chair I sit down on depends on how I adjust my numbers. If I sit with my trusty donut pillow on a HARD chair I have to make each channel’s number higher than if I use my pillow on an already cushioned chair. BUT each time I do sit it takes adjusting my interstem a bit AND a pain pill STILL. I could not do it without either. Believe me I have tried it takes both together I know that for sure. I have NOT gone over a 1hr tolerance much. If I do I pay for it still with more pain the next day or so. So I have to plan around that amount of time. I still want to tell all those out there that for me the Interstem has improved my life by 20-25% less pain. Perhaps if you haven’t had mesh 12yrs like I did you might get better results. Each case is different I know. BUT there is something about always having something on hand that YOU CAN manipulate in hopes of making your pain better. If I ever turn it off completely I am QUICKLY reminded the pain CAN BE WORSE.

    My pain is 24/7 unless in the pool. It feels like early or late childbirth pain. How many people could try to think and function in life while in labor? Especially after days, weeks, years! That is how I TRY to relate the pain to women who have had children. TO men it is MUCH harder and sometimes I don’t even try. Unless I tell them about men getting mesh for hernias and hurting and becoming disabled and their lives changing for the worse then that USUALLY gets their attention.

    One thing LINDA I forgot to mention to you when you asked about my husband was that his older brother died last month from advanced COPD. We had a BAD month then, we came to a new realization in our marriage both of us, about both our strengths and weaknesses and both discussed them and are trying to go forward with a more positive attitude and appreciation for each other.
    We have had a BETTER understanding after it was all over. A long story much affected by the yrs of MESH!

    He took off a few days to go to his family to of course be there for his brother and had to go up and down the turnpike a few times to be with him during different hospital visits but gratefully was with him when he went to a Hospice House and was there when God called him home. His brother was 18yrs older.

    My husband was the youngest in his family of him and 4brothers and sisters. He was just 9 when his Mother passed away from Leukemia a few days before his 10th birthday! CAN YOU IMAGINE? And he is from Southwestern Ark (THE piney woods!) and back then they still brought the body to the house for people to come pay their last respects and bring meals to the family etc.
    I just have a hard time wrapping my head around it but KNOW it was like that back then and in rural areas especially.

    So his oldest brother being 18yrs older and already married and living in Okla. He went back “DOWN HOME” about every weekend to check on his 4younger siblings and his Dad. So his brother was just as much like a Dad to him as a brother.

    All this said in only the rabbit chasing way I DO to tell you that when he WAS preparing to go to his Brother’s funeral, he asked me “Do you mind not going? it is going to be hours of riding, then hours at the funeral etc.?”
    I KNEW what he meant and he didn’t need me to worry about also! Especially at a time like this and so I said “I will be OK, we have two grown kids nearby and friends also at church.” Our RV we used for our trips for the surgeries to CA. needs some major repairs right now.

    But Linda it made me SAD to not be able to have been able to go see his brother or go to the funeral and support my husband. Just like a few yrs ago when I couldn’t go to our youngest son’s wedding that was out of town. He too was very understanding but it is things like that many people take for GRANTED! Simple but meaningful things that HURT me in other ways than PHYSICAL to not be able to do! I want to be there to celebrate or cry with my family and can’t because of what happened to me 13yrs ago.

    But then I have to look back and realize I AM walking now because of Dr.R. I don’t have 95% of the horrible mesh/sling that caused so much damage in me in 12yrs just the last few months before removal where I couldn’t walk without a cane!

    Although I can not drive, I can go to a church service, to dinner with my husband, take short walks with my granddaughter etc. Our pool is open again and I SO ENCOURAGE AGAIN!? ALL mesh sufferers to TRY water therapy in waist deep water at least ONCE! I do not have ANY pain when in our swimming pool! It is what has helped keep me somewhat sane and to have a pain vacation each day now is truly HEAVEN sent! There was an OLD in ground cement pool built YRS ago the former owners let turn into a POND! But we cleaned it out, power washed it, sanitized it, and it held water FINE. We bought a new filter etc. for it since the old owners sold EVERYTHING that went with it. Although it was built in the 60’s or 70’s our CEMENT pond was built GOOD and I LOVE IT!
    I thank God for it every day.

    Our granddaughter spent two nights with us a few days ago while her 3yr old younger sister had her adenoids out. She had asked me last winter “Grandma do you think we can go on walks like we used to someday?” I used to walk a LOT before I got so bad and had the surgeries to remove the mesh etc. I am told to NOT climb hills etc. but I can WALK! The only place around our rural house to walk is a Reservoir across the street which has a fantastic walking trail all the way around it but the VERY steep climb there is too much for me now.

    But the other night my granddaughter and I had swam quite a while and I asked her “Honey have you ever heard the COYOTES howl when at our house at night?” She said “No Grandma what are coyotes? are they like Wolves? will they hurt us?” I told her “Honey they are smaller than wolves and most times they eat MICE more than anything!” “They are much more scared of us than we are of them!” Someone had a trapper trap on our neighbor’s land a few yrs ago so much for coyotes we were OVERRUN by mice!” And we have LOTS of cats!

    So I said “How about we walk closer to the creek and see if we can hear them?” She was excited and held my hand as we walked past our house which is a renovated old dairy farm house and stopped. I practiced HOWLS and she giggled and then she practiced them also. We never got the coyotes attention (I thought they must be laughing at us!) So we went back home and I told my husband we had tried to hear some coyotes. He said “Well I just heard some very close to the house!” (Right where we had practiced!) We laughed and laughed I guess we DID fool HIM! It is little things like that I have to look at and treasure in life now more than ANYTHING! She said she loves me just the way I am, she bring me my meds in the morning that Grandpa gives her plus the special breakfasts he makes each time she spends the night. She is 7 but loves to sit as close as possible to me and JUST be close to me as possible and hug me. THOSE things are treasures. By the way the next night swimming we DID hear coyotes!

    My Interstem and of course the surgeries and most of all LINDA have helped me enjoy these all much MORE! GOD BLESS YOU ALWAYS LINDA! I am SO glad God gave this world such a determined, intelligent and strong woman as you are to stand up for the rights of what you KNOW is right for all the MESH victims and what it still sadly going on. Blessings, RR

  4. Sharon

    First, I want to thank the women who are sharing their stories, as they have given me *much-needed* hope. I have agonizing nerve damage and am turning over every stone to find something that works. On top of that, I developed a problem with my urethra almost a year post-surgery. I thought it was going to be over, but the rude-awkakening is that often it isn’t.

    Someone into vitamins recommended Lions-Mane mushroom for healing nerve damage. I just started on it, so I can’t attest to whether it works or not. Acetyl-L-carnitine is also supposed to help. If I find anything else, I will share it. I think it is probably something that takes a lot of time to work. The Japanese found very high doses of methyl B12 has helped regenerate damaged nerves. I have to take an entire mouthful, which I usually don’t want to do – but I like the nerve pain less, so it’s going to push me to do it. I get weary and need a break from trying to fix myself.


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