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
each time they put you under etc. is HARD on your body! AND YOU ARE PUT UNDER TWO TIMES IN TWO WEEKS FOR THE INTERSTEM-DR.R. HAD ME STAY A WEEK AFTER THE 2ND TO BE SURE I COULD TRAVEL BACK BY RV AGAIN. SO WE WERE THERE 3 WEEKS THE LONGEST WE EVER WERE AWAY FROM OUR HOME!
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.