The Interstim Implant
Although I had heard of this implant device before this time, I really did not hear much about it until very recently. Because I know women live in so much pain with mesh complications I decided I needed to research and find links where they could read about it and make an informed choice if this product is for them. As always I remind you that I am not a medical professional but simply a mesh injured woman who has become an advocate to give women both power and knowledge. I think the thousands of us who are injured by a bladder sling mesh implant are very wary of having anything else added to our body in the way of an implant, without we are informed of any side effects and what to do if there is. I do not believe there is any simple answer for the severely mesh injured woman who cannot live a day without so much pain, that they cannot function. These women have had to tolerate many partial removal surgeries and long term mesh before they got the right kind of help. It is because of this reason that I continue with this blog and search for anything that can help any woman, but also offer the truth about any product.
I do know that Dr. Raz and other surgeons at UCLA offer this implant as a last ditch effort to help these women live a better life. I found this link so that you can read up on their own site.
https://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=502&action=detail&ref=113 You should be aware that this was written in 2006 and you must ask some very important questions. For example, how many women have had adverse reactions to this implant? What type of adverse reactions can it cause including severe? How many of these implants have had to be removed because of adverse reactions? I think this is a good beginning but I am sure you can think of many more questions to ask.
Next you need to study all the benefits and risks of this surgery. I found this link for you to read. Do not skim over if you are seriously considering this implant. You have to be your own advocate now that you have been mesh injured. You cannot simply trust and not understand what is being placed inside your body.
Next, you need to go to support groups and read all comments by women who have these implants. Then ask questions there when you feel any concerns. Don’t just read one comment. Read them all.
This is an excellent resource to understand how this device is programmed and what you can do if things are not working correctly. I did sign up with this one to read and it was simple to do so.
You can also call for a booklet on this product (143 pages) called Medtronic, Your Interstim Therapy, Patient Therapy Guide.
So now you have a few links to go to and read, and you should make an informed decision after you have asked many questions. It may be right for you or it may not be. The difficulty is that most women are flying from many parts of the U.S.A and other countries in the world, so you have to know what to do if indeed you have any complications because of this product and you should take that into consideration. Will you have anyone in your own community who understands what to do if you find yourself with adverse complications? We have all found out that both before and after removal, doctors do not want to touch us, so you must know what to do and who to go to after you get home if you have problems. You are an adult who can think for yourself and make your own choices. That is all I want for any mesh injured women. That and a better life. I wish you well.
I remind everyone who comes here and reads this blog that there are many wonderful women who share what has happened to them because of their mesh sling implant and what they have tried to help them through the pain. One woman just shared this with me and I wanted to give you as many choices as possible. You should know that pelvic floor spasms can occur both before and after mesh removal. Your body is in extreme trauma because of your implant and the damage it is doing to you. While you wait for mesh removal you have to figure out what can calm things down to relieve your pain and help you get through the day.
“One thing that has helped my pelvic floor spasms is a vaginal Valium suppository, my doctor just started prescribing it a couple months ago, my ins. doesn’t pay for it, and I have to use a pharmacy that makes compounds, but the cost is inexpensive, and it does help!! These are widely used in Europe, and not many Doctors here prescribe it, but it is worth asking about!! I also use lidocaine in a jell/cream that I put inside me to help where the mesh is eroding again, and it helps for a few hours. A little goes a long way!!”
I found a link where you can read about a study that has been done on something that sounds similar to what she is talking about.
There was a good reason I began doing research and writing this blog. It was because of a woman who suffered for twelve years with mesh complications and every doctor told her it was not the mesh. By the time she found this blog she could no longer walk and laid in bed all the time. She could not sit at all. When Dr. Raz removed it, it was not easy and he never promised her it would be. A lot of mesh breaks up in the body over time and it begins moving and winds up where it was never intended. Women have told me that when they urinate, tiny pieces of blue colored mesh comes out and they have collected it to show their doctors. They are still told it is not the mesh that is causing their pain.
This lady will never live pain free but she can walk again. The mesh had strangled her urethra which was part of the reason she could not sit. She had been someone who was determined to stay as well as possible and be as fit as possible and she walked every day until it was no longer possible. That is the legacy of mesh.
Because I know all she has been through I wanted to research for her about this product so that she can make an informed choice as to what to do. My other concern is that like many women she has no support from the medical system when she goes back home. That worries me. So after I sent her the link she wrote back to me and here it is.
Hi Linda, They tried to put an interstem in me in 2002, I had no problem with it the 2 weeks I wore it outside my body, they just were new at the time and the Dr. was new at it and could not get it attached to my left side which was the worst side of pain (still is) with the BIG growth on that side starting that was so hard to remove. (She is referring to a ball of mesh that was removed by Dr. Raz later). Even if he had left it (the Interstim) in I would have STILL had the sling in me many years and it would have still done all the damage it did which included bits of the mesh being in my nerves so little they can never be removed. Dr. R said they have improved a lot on the interstems and he has done many. I have met two women who have gotten them and have had no problems and success for several yrs or more. I am sure it is like anything, what works for one will not work for another for a variety of reasons. I cannot stand the constant pelvic pain and spasms when sitting or laying down that are still as bad as ever, but NOW I know the reason why Thank God! My husband is encouraged there is an alternative for me and also believes Dr. R and what we have learned about them from him and the two women who have had good experience with them.
The only reason I did not have it implanted under my skin 11 yrs ago by the 2nd doctor is because it was at that time I had been through so many crazy treatments, experimental operations, etc and I was just getting legal guardianship for both parents so I told the Doctor when he wanted to try it again and get it hooked to both sides-NO NOT now no more surgeries for a while.
Thanks for your info I will look carefully at your website, Dr. R said the nerves are so embedded with mesh bits that I will ALWAYS have pain severely and my only other choice is Narcotics. I would not trust ANYONE but Dr. R and feel somewhat better because I DID have one hooked to me for 2 weeks without any side effects whatsoever. But I will be sure to check. I want Dr.R since he is the BEST and most experienced. I would trust my life with him!
Like I said my Primary Dr. told me last visit when I said I had to go back “WELL MAKE SURE HE FIXES YOU THIS TIME BECAUSE I AM NOT GIVING YOU ANY MORE OF THE PAIN MEDS HE WANTS AND AMOUNTS!.” Another Dr. at Dr. Rs said so many regular or primary family doctors just don’t have any concept of something they cannot see and expect healing like a broken bone does. I also told you before that after I got back last time my doctor said “WELL I DON’T KNOW WHAT GOOD IT DID YOU TO HAVE THE OPERATION IF YOU ARE STILL IN SO MUCH PAIN!” I told him “I CAN WALK NOW!” IT was SO GOOD once again to have Dr. R give me tests etc. over 4 hrs worth and exam and tell me he could see I was still having severe spasms, pain and now knew why because he can read scans and such and see MINUTE things like small pieces of mesh in many, many nerves.
To read more about this woman’s path through twelve years of hell, read these two blogs.