Living with the Interstim Implant
This morning I received a wonderful email from a lady I have written about before who endured twelve long years of agony before her bladder sling mesh was removed. This lady had multiple surgeries that were not needed and made her worse and she was always told mesh was not the issue. When she found me she had just been told she needed back surgery but she was tired of surgeries that never helped her and decided to research. It took months before she had it removed by Dr. Raz and by that time she could no longer walk. Removing it enabled her to walk once again but she had so much nerve damage from her long term mesh and the pain continued. But she never gave up. A few months ago, Dr. Raz told her he thought the Interstim implant could give her some relief. He said they had improved it with time and he believed it could help her live a more normal life. At the end of this blog I am going to include a link I have written about her past journey through hell.
Every day I hear from women who are living in so much pain, they are not sure that they can get through the months it takes to see Dr. Raz. I understand. It seems that the journey will never end and getting through even an hour takes every bit of energy they have. Yes, the pain from mesh is beyond anything you can ever imagine. Once you understand it, you cannot imagine anyone ever going through with a surgery that will introduce mesh into their bodies and yet it happens every day. It is because doctors tell women “We don’t use THAT mesh”. This is because when women begin complaining, manufacturers come up with a new mesh as the next gift to the medical community and humanity. Then once again, women become the barer of the terror of mesh.
How can we prevent it? Well, many have tried to fight the FDA to do something about this issue, but it falls on deaf ears. Women’s issues it seems just aren’t that important. But we are! We are the backbone of society because we keep families together. Mesh takes that away from many women and they are left alone to live a horrendously painful life. So speak out to every woman you meet that will be ready to listen. We must continue to change this, one woman at a time.
For the last three months I have endured so much and I have often wondered will I ever feel normal. But as I went back to read her story again I remembered that I have come a long way since the mesh was removed from my body last October 11th and I too must never give up. I am so much better now without the mesh in me and I will tackle my new issues, remembering that eventually things will get better.
What you should know about this woman before you read her email to me is that before mesh she was a school teacher. Her life was filled with her family and her church. She was very close to never living again when she found me and she decided to do anything she could to live again. It hasn’t been easy. The debts mount high, but she knows none of it matters without living a life that is more normal and pain free. It will take her time to get used to the Interstim because everything has learning curves, but I hope it will give her a chance at a better life.. Her spirit and determination is infectious and you can’t help but feel so much hope when you speak to her.
Now for her own words of the life she is living now.
I WANTED to tell everyone a Big Thanks for all the Prayers coming our way for a LONG TIME! We are now back home one flat back and two tires later we were back on the road safe and sound. Got in late last night-still on California time. We were gone about 3 weeks! Longest we had EVER been gone!! But when the Dr. who puts in a pacemaker type device for my nerve pain like he did, says come back in a week so we can tell it is healing and working correctly, you take his word for it and don’t want to get back to home and need a tune up!
I had two major surgeries in one week’s time. Both involved general anesthetic which is a lot for anyone’s body to go through! The first round they connected the device to the nerves in my spine that control my bladder and pelvic muscles that have caused me pain for 12yrs. Although they got the entire mesh bladder/mesh OUT last Oct. and I could immediately walk, the intense non-stop nerve pain never stopped. Further tests showed tiny bits of mesh are in my nerves permanently that can never be removed. I will always have infections and even fevers from it. But the superb Dr. in CA put in what they call an Inter-Stem unit. You try it one week hooked up to your nerves with a remote wired directly into to your back you have to clip on your waist. Then if the one week trial goes well, which it did for me PTL! They put it in permanently one week later under your skin about at your waistline in the back. I now have a portable remote control. But because it is on my back I cannot scan the programs with the unit itself, I have to use a flat antennae about the size of a credit card attached to the remote that I scan over the area and then it shows me the readings on my unit! I have been learning to adjust the unit at the correct times! For instance if I am sitting I have it on much higher numbers than standing. SO if it takes me a while to stand up in church you will know why! IF you see me JUMP up TOO MUCH you will know why too, because it is a JOLT! OR GOD MADE ME JUMP FOR JOY COULD BE EITHER! HA! My husband teases he can hold my remote and WAKE me up if he wants although I do not honestly EVER remember falling asleep in church! I am usually the one trying to make someone ELSE stay awake! HA!
God has blessed us in SO many ways!, the delightful and ever giving Christian family who have let us park our RV each time and hook up to electric and water, had us for meals and the enormous spiritual support and encouragement they all gave us as strangers in a new place yet like family in Christ of course.
The pain of the incisions is becoming less and less, I was SO GLAD to sleep in my own bed again last night! I am learning to use the unit, putting in the correct number for nerves on my right and left side. The number on the left side are MUCH higher because the growth and invasion of nerves was so much larger on that side from the 12yrs it took on a life of its own! But there was a growth that had just got into my legs nerves the last 6 months or so before I had the mesh removed. It had invaded the nerves and muscles to the point I could hardly walk WITH a cane! The Dr. had two other Dr.s came in during my follow up visit this time. He remembered me WELL!
Even though he does SO many of these complicated life changing surgeries each week! He said I am lucky to be walking today and without a cane! Another few months could have made a very big difference if it was done later. He explained to them all the various nerves and muscles it had gotten into and their long complicated names. He remembered my surgery well and said I really made him work hard and I had been the one with a sling the longest to that point which is why it took 2-3 times the normal amount of time to remove!
The unit I am extremely blessed to have been put in by this kind CARING older Dr. who outdoes many 1/4 his age and I praise God for it! He was able to hook up 8 leads from this unit and is the only Dr. in the U.S. able to do so for this unit that is designed mostly for 2 leads and sometimes 4. So God has blessed us greatly and our prayers of 12yrs have been answered to the best ability possible! Most people get a 50% improvement but the state my life and health was in last yr I am beyond elated! To be able to return to church for a service, to ride an hr or two places and perhaps someday drive again! To be able to go out to eat with my husband and see the grand kids participate in activities are ALL things I will NEVER take for granted again! They say I will get more and more familiar with the unit and should be able to cut down on my pain pills as much as possible, I hope. As I said I readjust the numbers for sitting, standing, laying down etc!
I still have problems with my right leg that was affected because no unit was installed for it. But the biggest problem is at night and the numbness and stinging and sometimes muscle spasms plus I have Fibromyalgia which has ALWAYS taken 2nd base to the intense nonstop pelvic pain and spasms! SO ONE yr later to this month, 4 drives to CA from OK and we have come through the long dark tunnel! The Dr. wants me to come back for a follow up in 6 months, I should be able to FLY then and our daughter has been kind enough to offer to go with me if possible. THEN WE would only have to stay the night before with our friends and the night after the DR.s appointment.
I am praying in 6months the Lord provides FINANCIALLY$$$$$$ to do this Jan 7th when it is scheduled! Also ways for us to catch up some on the enormous bills we have accumulated this last yr from driving back and forth the 4 times and the expenses coming and going, repairs to our RV and of course Medical and Dr. bills coming in each and every day it seems. We pray and believe God has His Hand and WILL in that outcome too which is going on.
Again thanks so for all your prayers we both wanted to give up so many times, especially myself as the 12 yrs went on and on. I said many a night why me LORD? and have had to look at both sides. AND especially pray for my husband who I could have NO way done this without and his own health and strength, His own health he has put on the back burner for a LONG time. Just to get out and change a tire was an enormous strain for him with his permanent injuries of his back, arms and neck! And I could help in NO WAY!
The Lord may have had me experience all these yrs to share with others and warn them about the mesh devices that they STILL PUT IN EACH AND EVERY DAY UNDER DIFFERENT NAMES, BUT ALL ARE POTENTIALLY DANGEROUS EVEN DEADLY. Some women have worse horror stories than me! Some women had family that abandoned them. Some sadly committed suicide when pain NEVER ends! Some have had worse things done to them by worse doctors than I did in 12 YEARS! Some were literally sewn back up to die! Some lucky ones found the same Dr. I did in the nick of time.
I personally know of and/or prevented 7 people from following through on getting mesh, including one young man! There are other ways to do the same things being done with mesh using your body’s own skin etc in a safer way. With mesh some people have trouble day one, some go for yrs before it breaks up and/ or grows into a monster of its own creation invading your body! It is like a ticking time bomb and I am in NO way embarrassed to talk to ANYONE wanting info plus the great site and KIND, KIND lady who led me to the wonderful DR. I found!
I now many of you saying that you can’t afford to go out to UCLA and it does take many sacrifices our part and that of our family. I know what this lady had to do to find the money. She could not fly because she couldn’t sit, so the first trip they took was in an old van with her lying on a foam mattress in the back. It was hell for her so they had to find the money to buy an older used motor home. They sold anything they could and although it isn’t fancy, it did make travelling easier for her. They knew they had to come up with a way to park while staying out there so she sent and ask me what to do. I knew someone who I thought may give her ideas of how to find a church, so I gave her that information. She set to work and found a way to stay out there and park. She and these people have become very good friends and she has stayed on their property every time she has gone to UCLA. So if you are active in a church, try to find a sister church who will reach out to help you. Asking for help is half the battle and you just may find a way. Please do not ask me to help you because this has to come from you.
If you can fly, then there are ways to get the tickets paid for. It takes time, so don’t do it too late. You can find that information here. http://meshangels.com/2012/11/mesh-removal-no-money
Her journey will continue and so will her never ending spirit. She makes me proud to know her and you can read more about her past journey here. http://meshangels.com/2012/09/twelve-years-of-mesh-hell-now-a-light-of-power/
I don’t know much about the Interstim implant but while out at UCLA recently I met a woman who has one and you would never know it. It has been in her for awhile and she has learned to use it to her advantage. I was quite surprised when she told me she had one because she looked and acted normal. She said it has helped her with her nerve damage pain so for her it has been worthwhile. Without women sharing their stories with me I could not share the information with you. I know other women will be seeking ways to help with their nerve damage pain and I appreciate the women who will share so that others will understand more about this implant.
This is the link to the blog I wrote awhile ago about the Interstim. There is a link to a support group where you can ask more questions. http://meshangels.com/2013/03/the-interstim-implant
Many of us are searching for answers to help with our nerve damage and for some of us, natural products help us a lot. Another woman I met while out at UCLA told me about something she takes for her femoral nerve damage. Terry Naturally Healthy Feet and Nerves. She said this. “I just purchased this at the health food store. Took two tablets and had almost immediate relief from the nerve pain. (Hers is also femora) It is mostly vitamins, thiamine, riboflavin, niacin, b6, folate, b12, biotin, pantothenic acid, zinc and chromium, but also an herb called boswella. As well as alpha liposuction acid. I read a little about the boswella.” This is a link to a discount on line. http://www.vitacost.com/terry-naturally-healthy-feet-and-nerves-60-capsules-1
This is the link to the product I take for my own femoral nerve damage. My damage is nowhere as near as bad as some women and I do not need pain meds so long as I stick to this plan. However, every time I have surgery I have to stop taking it and then I realize just how much it works for me. Once I begin again it takes about two weeks for me to feel the difference. You can see what I take below and here is the link. http://meshangels.com/2012/12/mesh-my-nerve-damage-plan I also take other B vitamins and all work together. If you take something else that helps you, then please leave the information as a comment. It will be much appreciated.
This is the product I take.
I fear pudendal damage is the worse nerve pain of all and these products may or may not help. If your life is on hold because of severe nerve pain, you may be looking into the Interstim implant and I hope what this women wrote will help. If you have the Interstim and think it has helped you, please leave a comment. You can help many women through their suffering and we all appreciate the input.
It is important to me that the person who shares with me is happy with the result of her words and my added words. So I always ask if they want anything changed or deleted. This lady was very happy because she wants to share and teach how the Interstim works while she learns. This morning I heard back from her.
“I am so lucky to have had Dr. R. put it in.. I read online somewhere
that he was the only one able to put in 8 leads for the device by a way he came up with himself! It wouldn’t surprise me if he was the 1st or only one doing it like that! When the interstim rep talked to me at the hospital he told me about a lead on each side, that is all he said according to my husband. But when I got back to the RV I was reading the instructions etc. learning how to use it and realized it had 4 DIFFERENT channels that affected 4 Different areas in my pelvic area. My husband asked “ARE YOU SURE?” I said Yes I AM sure! I know my body is feeling 4 DIFFERENT places being affected.!!! So on
my post surgery visit I asked Dr. R and the nurses and they said YES, 4 different places are affected on 4 different channels! IN FACT Dr. R put TWO leads on each place for a total of 8 leads! So that was GREAT news! When they wheeled me into the surgery room the 2nd time I remember them saying Today is the first day of the rest of your life!
It has been taking some getting used to changing the numbers when
sitting down and then lowering them before getting up. I also of course looked through all the things that I was supposed to not be around according to the manual. As usual they do the OVERKILL on warnings and when I asked the nurse who specialized in Inter-Stems, she said most of them were NOT the hazard they told they were unless you just put your BUTT up against them with the unit! HA! Mostly NO MRIS!, airport scanners and some other things!
Yes, I have the full benefit of feeling a difference enough to sit etc.
when taking pain pills AND having the Interstim on the right numbers. BUT before NO AMOUNT of pain meds would have enabled me to be able to sit up and other things I did.”