Update -Pudendal Nerve Inter-Stim Implants

I am VERY encouraged! I had trial bilateral inter-stim implants on March 25, 2015 and did well. Our insurance company agreed to cover the permanent implants and that surgery was done on April 21, 2015. Tomorrow will mark a full month of using them with wonderful outcome. I have four programs in each modulator to try before going back late June. The fourth program has by far been the most helpful. I have a part-time desk job and my pain level would grow to 8 - 10 on the pain scale shortly after sitting. I would have to take three hydro to bring it down to a level where I could concentrate and continue working. I now typically only take one hydro and my pain level has never been greater than a 5 since the surgery. I just wanted to encourage anyone who is contemplating having the surgery or looking into it to definitely look into it. My quality of life is much improved and I can't imagine ever going back to that kind of pain again. When I return in June to my doctor who is out of state, the programs I didn't find very helpful He will remove and put new ones in for me to try. If anyone has questions, I would be happy to try and answer them. Only three doctors in the US place the electrodes next to the pudendal nerves. I had trial bilateral sacral inter-stim done prior to this without improvement, so I'm glad I didn't give up on neuromodulation as being the answer for me. It's not a cure, but has been hugely helpful for me.

78 Replies

oldest β€’ newest
  • I am happy that you have had such positive results. It gives encouragement to others. Thank you for posting your progress.

  • Thanks April...hopefully my experience will benefit others. God bless.

  • I just got back yesterday from seeing dr benson. He ordered a pudendal block which I had yesterday. I didn't feel any relief right away but they said give it up to 5 days for kenalog to work if it's going to. He talked about interstim with me if the block worked however I'm not encouraged that it is going to. He talked about a lady from cedar rapids that I could possibly talk to about it if needed. I told him I thought I already was conversing with her. He is very professional and I found the staff great. The surgical center was wonderful. I'm so happy that you are getting your quality of life back. I'm so very frustrated right now but hoping I can find answers soon.

  • I'm so sorry you are discouraged, but totally understand your being so. I am glad you went to see Dr Benson and that your impression and experience was positive like mine; but disappointed that you don't have a clear answer yet. Yes, I am the lady from Cedar Rapids. So, if you don't experience any relief from the PN block, did he say what your next step should be? He did mention to us that for every 5 women that come to him that have been diagnosed or suspected with PN only 1 truly has it. Since I turned out to be that one, we never thought to ask if he was able to accurately diagnose and treat those 4 without PN. Not having PN would be a good thing; however I totally understand the frustration a person experiences for not having a clear answer for why your body is being inflicted with so much pain. I'm so glad you replied. I don't know if you believe in the power of prayer, but I am going to be praying you won't give up and the Lord would show you the path you should take to get the help you need. I really think highly of Dr Benson and hope he can ultimately help you. If you end up being diagnosed with PN and would like to ask questions about the inter-stim as possible treatment, I would be happy to speak with you. I have been praying God would use this experience in my life to help others. Before having surgery I had thought it would be helpful to talk with someone who had the implant surgery. There is a gal in Australia who has a website and shares her experience of being diagnosed with PN after falling from her exercise ball when it exploded. She had sacral inter-stim surgery and has been successful in regaining some quality of life back. She has become quite instrumental in the medical community of raising awareness for this horrid condition; it's quite inspiring. I forget the name of her website, but if you google Soula, pudedendal neuralgia, Australia, I'm sure you will find it. I have found it helpful to hear of others with similar journeys who understand the different emotions we go through while seeking an answer. Don't give up!

  • Would you mind telling me in what state is Dr. Benson is located. Thank you.

  • What is Dr. Benson's specialty?

  • That is so sweet of you. I cried tears when you wrote you'd be praying for me as I pray for all of us with the horror of pelvic pain. I'm teary eyed right now, but am this way a lot....I am so scared of this condition. I will google Soula. Dr Benson didn't give me any other things to think about if this wasn't PN, but he wants me to do a bladder diary for 3 days and I will have to schedule a follow up. I wish I could put a picture to your name. Do you have facebook? If you want to connect, let me know! We need all the support we can get.

  • Are the bilateral interstem implants used for rectal nerve? I am in USA. Do you know anybody here who I could talk to?? Would appreciate your help.

    Did you just get it for pelvic? Can you sit without pain???

    Thanks so much!

    trishj46

  • Hi Trish,

    I am on my way out the door for work...but will do a quick reply. This procedure is for urinary or fecal incontinence as well as pain. No...I definitely could not sit without pain prior to surgery...it was excruciating most days if I chose to sit...which I have a desk job and have neuropathy in my feet as well so I would have to keep rotating between standing, sitting and kneeling. Which, I still do because I don't want to cause further damage to the pudendal nerves; however I am much, much better and my pain level is reduced greatly. Basically the damage to the pudendal nerve can cause pain anywhere from your lower back to anywhere your body touches a chair when you sit, rectum included. I went to Kevin Benson in Sioux City South Dakota at the Sanford Clinic. You could call and talk to one of the nurses. From your questions it seems to me they would say it would be worth a trip there for an exam and consultation. If you could have your GP or gyno refer you and send your records prior to an appointment, that would be most helpful. I would be happy to try and answer any questions you may have regarding the inter-stim or my symptoms prior to surgery, or my experience with Dr Benson. I wish you well.

  • Yes, I would definitely like to connect. I'm not a FaceBooker, but we could private message here and exchange email addresses and I could send a photo that way if you would like. Soula's website is pudendalnerve.com.au in case you didn't find it. I am glad that Dr Benson is having you do a bladder diary because that could reveal something as well. That tells me he isn't giving up on you and he may have an answer. I so understand and relate to your tears, the horror and fear of this condition. My heart goes out to you. Please hang on and keep searching.

  • Whoopsie...this response is for jlteam5 above.

  • I'm so glad something has been found to give you some relief. I hope it continues for you. Xx

    I wouldn't wish this sort of pain on anyone.... It's truly life altering and depressing.

    SS xx

  • Thank you Suzy for your well wishes. I am so sorry that you are suffering with pelvic pain too. You are SO right...pain can change a person's life very quickly. Keep searching for an answer to your pain and don't give up. It is so good that we have each other to lean on and can relate to and support one another.

  • Hello. How very interesting to hear of a completely different method in trying to release the pain. I had never heard of this form of treatment as it had never been put forward as a proposal. I had decompression surgery on 23rd April 2015 in Nantes,France. Lots of rest a nd limited sitting.

    Thank you for your Post.

    Masses of luck for a painless recovery.

  • I wish you the very best on your road to a full recovery. It doesn't surprise me that you hadn't heard of the pudendal Inter-Stim surgery. There are only three doctors in the states currently performing this surgery. It's not a cure, but has definitely lowered my pain level. I would love to hear how you are doing during your recovery. Blessings!

  • I am trying to post every couple of weeks or so. It is named "I had pudendal decompression surgery in Nantes ..."

    Bless you to on your recovery.

  • Please give the names and locations of the three doctors. Thank you. Your previous post was two years ago. Is the interstem still working for you?

    Thanks

  • Dr Kevin Benson - Sioux Falls SD

    Dr Ken Peters - Royal Oaks, Michigan (trained Dr Benson)

    Dr Ross reccomende by Brandi in this post) Brighams and Woman's in Boston MA

  • Is this the sacral nerve root stimulation approach? I tried the peripheral nerve stim for pelvic floor rectal pain but seemed to offer me no relief. Be interesting to see how the stimulator works 6 months down the track. For some people their pain adapts to the stimulator with time. Hope it works for you though. I am based in Australia and have one of the best pain specialists for these nerve stimulators.

  • Hi Pafen,

    I'm so glad to hear you have a very competent doctor. That is so important to trust your doctor and feel comfortable with him/her. I tried the sacral Inter-Stim trial in December with the temporary leads and they migrated when I got out of our SUV directly after the procedure giving me electrical jolts instead of the mild tapping sensation you are suppose to have. So, I was very disheartened and had the leads removed. The doctor that did that procedure referred me to Dr Benson in South Dakota who is 1 of the 3 doctors in the US that does this particular surgery. The wire leads are implanted deep within the pelvis in close proximity to the pudendal nerves. In my case, I have bilateral PN, so I have two implants. He uses permanent leads for the trial that have little barbs on them that keep them from migrating and you can try the trial for up to a month done this way verses the temporary leads which need to be removed after one week. Yes, I agree it will be interesting to see if I continue to experience relief from pain as time goes by. I guess it is important to keep rotating the four different programs so your body doesn't become accustomed to it and stops being effective. Right now I'm encouraged and thankful for some relief. Lord willing it will continue. I wish you the best. Please keep us updated on how you are doing. God Bless!

  • Im very interested in the stimulator you have. I damaged my pudendal nerve 20 yrs ago. I have had every surgery out there. Nothing has worked. I would love to try the stimulator that you have. Could you help me get this information? I am desperate. Could you email me at

    lbryant85@valornet.com

    Thanks so much!!

  • Hi Dreambig,

    I am SO sorry it has taken me so long to respond...my life is crazy right now, but I want you to know I am available to speak with you if you would like.

    I don't know where you are located so I am giving you information for the two doctors who do this procedure in the United States. Hopefully one of them isn't too far for you to travel to. We are 6 hours away from Dr Benson, but it was worth the drive even though travel in a vehicle sitting is next to impossible. I made a cot size cushion and laid on it with the seats down in the back of our SUV and it worked out great.

    Here is the name and information of the originator of neuromodulation by the pudendal nerves.

    Dr Ken Peters

    Comprehensive Urology

    31157 Woodward Ave

    Royal Oak, MI 48073

    (248) 336-0123 (Office)

    Her is the information for Dr Benson who did my surgery.

    Beaumont Hospital Women Urology

    3601 W 13 Mile Rd

    Royal Oak, MI 48073

    (248) 898-0811 (Office)

    Dr Benson was taught by Dr Peter's whose success rate I believe he said was around 85% and his is a little lower. If you do a search on Ken Peters on YouTube, there are several videos that are helpful with more information.

    I would highly recommend Dr Benson and his staff are equally as caring and compassionate. If you have had a problem with Drs listening or believing you...you will not have that problem with him. I am so very fortunate and blessed to have been referred to him by my obgyn.

    Please let me know if you have any specific questions...I would be happy to try and help.

  • Thank you so much. I will call one them. I really appreciate you getting back with me.

    Thanks again

    Lanie

  • Did your insurance company pay for the stimulator? Do you mind me asking how much it was.?

  • My insurance did pay for it. Dr Benson's office did quote a price for the trial implant and when it was successful we met preapproval for the permanent implants. Since insurance paid, I really didn't keep track of it, but both the trial and permanent were covered and they take care of all the paperwork for you which is so less stressful. Also, I needed two implants as I have PN on both sides...many only need one implant. Please let me know if I can be of any further help. I pray this will be the answer to give you long awaited relief. Please let us know how you get along.

  • Thank you so much!!

  • I'm glad I reread my reply...I accidentally copied and pasted Dr Peters info twice. Below is my Drs info.

    Sanford Female Pelvic Medicine and Reconstructive Surgery Clinic

    Dr Kevin Benson

    1500 W 22nd Street

    Suite 402

    Sioux Falls, SD 57105

    Get Directions

    Hours

    M–F: 8:00 AM–5:00 PM

    Phone

    (605) 328-8750

    Fax

    (605) 328-8751

  • Thank you!

  • Hello, hope I'm not bothering you. I wanted to know if you had really bad vulva pain and butt pain with your pundendal nerve damage.

    Thanks

    Lanie

  • You aren't a bother at all. I believe all things that happen to me can be used by God for good in some way. If I can provide you even a little help, it will bless us both...so don't hesitate in asking any question.

    Yes...I had really bad vulva pain and butt pain...8 - 10 every morning after I had sat for a short amount of time at work. Sitting on the toilet or hovering over a bowl of really cold water provided a little relief. But, once it had awoken for the day it was not going to quit. The only relief came by way of hydrocodone. I am still on a very, very small dose of that each day, but it isn't taken strictly for the PN. Dr Benson also diagnosed me with vulvodynia as well as PN. From what I have read, it is not unusual for these two ailments to coexist. I also have SI joint dysfunction with pelvic instability, which is also not unusual and contributes to pain by causing the pudendal nerve to be unable to glide as it should. With the vulvodynia, Dr Benson prescribed a very small amount of Estrace estrogen cream twice a week. It took several months before it improved at all, but patience won out and that has helped along with the Inter-stim immensely. I am a post-menopausal 60 year-old so depending upon your age, that may be a good option for you as well. The one thing you may not want to hear, but I feel obligated to share is a huge part of recovery, and I didn't think it was possible when I first was diagnosed, is stop sitting whenever possible. I thought how can I navigate through life without sitting? As I started getting my pain managed through the Inter-stim, I gained strength and am now able to stand at a computer station at work up to 6 hours per day. I literally never it unless I have to or unless standing made me feel extremely uncomfortable in the situation. For the most part I stand in the back at church. I have even been known to frequent restaurants only if they have the bar high tables so it is less noticeable that I am standing, if I am a passenger in the car I lie down, etc. I really don't think I would have made the progress with the Inter-stim alone that I have if I hadn't given up sitting for the most part. The Inter-stim is not a cure, but a way to manage PN. I feel like I am rambling so I will scoot. If you think of anything else, let me know.

  • Thanks so much for sharing. I am 55 and post menopausal. I even had my SI joints fused, it helped very little. I called Dr. Bensons office this morning and she said it would be able to get in at the end of this month. I just pray that it will give me a better quality of life. You are so sweet for helping me. I am very grateful.

    Lanie

  • It truly is my pleasure. That is SO encouraging Lanie! I will join you in that prayer that you will regain some quality of life...that's so important. I think I have an appointment with him October 26. But I have been spotting and and after quite a bit of testing I just found out I have utetine polyps and they will have to be removed here in Iowa, so I may have to postpone my appointment with Dr Benson. I am SO hopeful for you. Please let us know how you come out! Praying...Roxie

  • Hello,

    My name is Deb. I've been on the site for a while now. I too was turned off by the stimulater when I had one implanted at the levels of T8-T12. It made completely worse and by day 3 of the trial I wanted to rip it out of my back. It was done in New York. I was not a happy camper. It was supposed to be a DRG stimulater and I turned out to be an experiment for that doctor which I know now for back pain. My question to you is do you think it's worth me giving this a shot. Suffering a very long time going on 17 years now and if you count the 3 years before of infection it's more like 20. But i fell on my coccyx bone really hard years ago and that's now what my team of doctors believe started it and then 4 years ago I had a surgery that made me worse and my doctor seems to think that's what prompted more scar tissue around my Pudendal nerve and has put my pain over the top. Unfortunately, I'm at a stand still now. I receive 2 nerve blocks a month just to deal with the pain. I basically done and have exhausted all options and I have really turned to god and have found my faith again. That's the best thing that has come out of this entire ordeal. But that you for sharing your experience. It's very promising and one more thing. Was this covered by your insurance, or did you have to pay out of pocket for it? Thank you all my best and prayers for my fellow suffering Debbie. πŸ€™πŸ‘πŸ™

  • Hi Deb,

    I'm sorry for all you have been through. I'm glad the Lord has and is helping you through your journey with pain. I too wanted to rip out my first trial with inter-stim at the sacral level. The temporary leads this doctor used migrated easily and when I pivoted on the seat of the car to get out after the procedure they migrated and caused more pain. So, the pudendal nerve level inter-stims they use the permanent leads which are much better during the trial and having them in close proximity to the pudendal nerve made all the difference. Yes, it was covered by my insurance and the doctor's office take care of all of that for you. Unfortunately, if the only symptoms you have is pain, it may not be covered. It is primarily used for incontinence, but has been found to help with pain as well. I had tried drugs, PT, injections, etc and nothing was helping, so it was the right decision for me. You can always go for a consult and exam and then make a deision from there. I wish you the very best. Love and prayers. Roxie

  • Thank you for the reply. But I guess I should make it clear that my symptoms are that bad as well. My Pudendal nerve is effecting bowl and bladder as well. With all the fun things like stress incontience, voiding issues, Trouble initiating flow, not fully emptying, burning pain with urination and increased after bowl movements. Constipation and foreign object sensation in the rectum. I also leak urine. The one thing I told the doctor and the rep about the stimulater I had is it did help out my bowl and bladder issues. I was able to go to the bathroom easier. I fully understand where you are coming from with those symptoms. I think a lot of us have them. Especially if there is damage to the nerve. With my time at home now I'm going to start to look into trying to get fundraising going for those who can't afford procedures and insurance doesn't cover it. If anyone is interested in joining me on this journey please let me know. I think it would very helpful as opposed to one selling jewelry like I have done in the past and I know 2 of my friends have done this. Just recently my friends wife sold some of her most meaningful jewelry so her husband could get a treatment and I have done so just to pay bills. HARD TIMES! I also have heard of others selling jewelry to get surgical procedures done on other sites. So, I thought this might be a very good idea. If anyone is interested I have some plans. I would also like to get some feedback from the administration to see what you all think of it. I would love to chat privately. Please, anyone willing to help out just let me know. Thank you again Roxy. I may give this a thought. I'm very afraid to try things now. But always willing to give it a shot if if feels right In my gut. Long story behind that. If you want private message me ok. God bless you Deb.

  • I would be more than willing to help.in any way I can

  • Hey that is awesome. Do you know out of everyone on this site you are the only one that said you would be willing to help. Here is my situation right now. They are running me through the mill right now because I have had episodes of temporary paralysis of both my legs and very severe spasms in my legs. I'm kinda really scared right now. I haven't done much of anything yet. In fact I was doing quite well for a while there with my pain but this has been a very big set back and I kinda feel like a coward that I fell into a rut and can't climb out this time no matter how hard I try. Sorry to be telling you all of this but I guess I feel comfortable with the people on here. So, I'm basically waiting to see what's wrong with my legs, what's wrong with me before I go any further with any of this. Where do you live? Just out of curiosity. I live I New York. Thank you again Deb. God bless πŸ‘πŸ™πŸŒΉ

  • Hi Deb. I am so sorry that u r going thru this. Please know that I completely understand your desperation to know what is wrong and relive the pain. If u read my posts, I have been at times suicidal because i couldn't get any pain relief and the quality of my life has dwindled to nothing. I am fortunate that I work for myself, otherwise i would be out of a job. Please let me know how I can help. i would be willing to give u my tele number to text, if you would like. U can text me day or night. We have to stick together in this terrible fight. I live in Washington State. Lots of love and prayers going your way.

  • I just reread ur message. Please don't feel like ur a coward. Most people will never know pain, the pain we all face day in and day out. Most people won't understand the frustration of going from doctor to doctor trying to find an answer to our pain. Please let me know if u would like to keep in touch outside of the forum.

  • I sent you a private message thank you for replying and for the kind words. I've been down in the dumps lately and I'm trying to get out of this. I usually can but until I find out what else is going on with this body I'm scared and frustrated. I'll have to explain everything to you when we talk. Thank you again. Sending prayers your way and to everyone on the site. God bless Deb. πŸ‘πŸ€™πŸ€—

  • Dreambig...love that!

    I'm out the door for work...but I will email you before week's end. I'm so sorry for your extremely long journey of pain. That says a lot about you that you continue to search for an answer. I will be in touch!

  • I know this post is from a year ago, and there a good chance no one will read this, but I have to try anyway! My husband is a physician, and did a year of training at Beaumont. We called Dr. Peters, and he has been emailing with us back and forth! We live in GA, 11.5 hours away! No way I can sit on a plane! I want to have a neuromodulator- but which one? I had a clear, diagnosed case of pn- damaged during a pelvic surgery last year. Sacral, peripheral?

    Which one is best for us? Can you do more than one trial? Any advice is appreciated!

    Amy

  • I'm RLH356 and started this post. Even though I didnt have Dr Peters implant my neromodulator, I would recommend him. He trained my doctor in SD who does places the leads in close proximity to the pudendal nerve. Dr Peters success rate is a bit higher than mine...I think around 85 to 90%, with Dr Benson close behind. I had the sacral trial implant done first in our home town and it migrated as soon as I pivoted on my bottom to get out of the car the day of surgery and had it removed several days later. About a couple months later my home town doctor referred me to Dr Benson who does the peripheral implant.. If you improve 50% or more during the trial, it is considered successful and you can move forward with the permanent implant. We live 6 hours away from my doctor and riding in a car is my biggest trigger. We have a suv and put a twin size mattress in the back. They streamlined my appointments so we never had to go back and forth any more than absolutely necessary. Once for the trial and once for the permanent. It's not a perfect solution, but has proved very beneficial for me and wouldn't be without it. I still don't sit anymore than necessary. I hope this info is helpful. If you have any more questions, don't hesitate in asking. I wish you the best in your journey to find healing.

  • Don,t know if you are still following the forum but I would be interested to know more. I have read about these implants with varying degrees of success. My wife's pain levels vary from between 6 - 8 daily.

    We live in the UK so are unfamiliar about the hospitals in the US. Albeit I do have relatives in the US.

  • My pain climbed to 8 - 10 every day as well prior to my implants especially while sitting or riding in a car. So I relate to how devastating and life changing it can be. My doctor said quite often when a new patient comes for their initial visit, they share they are suicidal because PN is so painful and effects their quality of life so greatly. So your wife is being very accurate in describing the intensity of the pain she is experiencing. Whatever questions you have, I would be happy to try and answer them.

  • Hi I'm having a pelvic interstim with them implanted right next to the Pudendal nerve implanted in May at Brighams and Woman's in Boston MA with Dr Ross. Just like you had. You have given me a light at the end of this very long dark painful tunnel. I have tried it all. Even bilateral decompression of the Pudendal nerves.

    Thank you so much πŸ’œ

  • Hi Brandi,

    I'm sorry you have been effected by this horrible condition and that even after surgery, you have not found any relief. I'm happy to hear more physicians are learning this procedure and you have found one that is hopefully close to you. Thanks for sharing about your upcoming surgery with Dr Ross in May. I will definitely be praying that it will be effective in relieving your pain and giving you back some quality of life. If possible, please share with us how you get along after surgery. God Bless, Roxie

  • Thank you so much Roxie

    God Bless and

    Happy Easter 🐰🐣🐰

  • Hello,

    I wanted to ask if this procedure has a high chance of failure. Does being very skinny have any effect towards it failing and did you deal with any scar tissue causing your pelvic floor muscles to tighten up?

    Thanks

  • Hello!

    Dr Benson told me he had about an 85% success rate I believe. That was three years ago, so I am going by memory. I have bilateral PN so I have inter-stims implanted on both sides by my sacrum. The leads travel down deep into the pelvis and are located in close proximity to the pudendal nerves on both sides. I would suggest being evaluated as far as your weight is concerned and whether that would disqualify you. The good thing about his procedure is you have a month trial to see if it is at least 50% effective in helping you with your particular symptoms. If it is successful, you have a second procedure to make them permanent. If at some point you wish to have them removed for some reason, it is reversible. If the trial is unsuccessful, he just pulls the leads from the trial. If you have further questions, don't hesitate to ask.

    Blessings...Roxie

  • Thanks or replying. What are the chances of healing? I understand this doesn't heal it but is there any chance of my inflamed pudendal nerve to heal. It's not damaged just very inflamed. Does your leads help with muscle spasms of the pelvic floor and bowel movement?

    Thanks

  • Also are the leads uncomfortable. I understand there are things that help it to not migrate. Did you ever worry about migration?

    Thanks

  • Dr Benson uses leads that have tiny tines on them in several places that orevent them from migrating. They do fluctuate a bit when you change from standing to sitting to bending. He used the examplle that they are like grapes in jello. Think of a fishing hook and how the fish can't pull out of the hook because of the tine. No pain whatsoever...you are completely ovlivious to the leads in your pelvis. You have controls that he guides you to the correct program and intensity at first. Then a month or so out, you can begin experimenting and trying other programs. If you have ever experienced a tens machine, that is what it feels like. A tapping or buzzing that is designed to interrupt the pain signals or the wrong messages that the nerves are sending to your brain to cause incontinence, constipation, etc.

  • I have an appt with Dr Benson in a couple weeks and my husband and I have lots of questions similar to what you are asking now that I am three years into the implant. The best way to answer you I think would be to say I can't imagine not having the inter-stims because my pain reached 10 on a daily basis and that doesn't happen anymore. I attribute that to several things; the inter-stims, learning to consciously relax my pelvic floor throughout the day, not sitting unless absolutely necessary. I fell from my bicycle onto my left buttock and that seems to be what triggered mine. I also had my lower back fused in 2012 and as a result of that surgery have SI joint dysfunction which contributes to the PN pain as well. So does that mean it will never improve? I don't think there is a clear cut answer and I believe with God there is always hope and anything is possible.For me, coming to terms with this affliction was half the battle for me in accepting the fact that I would not be able to sit like a normal person does. I couldn't imagine maneuvering through life like that, but it just takes time to move through the stages of acceptance and grieve the loss of your quality of life. Riding in a car is a huge trigger for my pain as well and fully recline our SUV seat when I am the passenger. I continue to work part-time at a desk job, but I bought a riser for my computer so I can stand. I still have moments of sadness because it changed my life and my husband's life drastically. He is super supportive as well as my adult children, which helps tremendously.

    I just noticed your question about bm's. At first, it was like a miracle cure because I had suffered from constipation my entire life and the inter-stims were very helpful. All of a sudden I started having difficulty with that again and it can kind of come and go. I'm learning certain foods I should avoid entirely that contribute to it. I also am on a low does of hydrocodone daily to help with pain when I want to have the luxury of sitting and opiods can contribute to constipation as well.

    I wish you all the best.

    Roxie

  • And how big are the leads?

    Sorry for so many questions

    Thank you

  • Very small...it's like a long wire that is small in diameter with I believe 4 -6 leads spaced out on the wire which are also very small in diameter.

  • PS: Please don't apologize, I always feel it is a priviledge to come alongside anyone who has suffered from this horrid ailment. It gives my experience meaning and is a blessing to me if I can offer any encouragement or help.

  • I will send a reply if I have any other questions

    Thank you very much

  • I wanted to ask before you got the procedure done was your pelvic floor muscles tight? Do you think that would complicate weather or not the surgery would be successful? Also have you been able to run and do Physical therapy without it migrating or worrying about it migrating? Last but not least how long can those leads stay in your body?

    Thank you so much

  • I'm not a runner, but I walk for exercise. I can bend, etc and your physical therapist would just need to be made aware of the implants so she wasn't pushing directly on them. The battery life of the implants are 5 to 10 years depending upon the intensity setting you use. Before they run out you have a simple 10 minute surgery to have the batteries changed. I thought the surgery was easy. I was instructed to be careful for a week and then back to regular activity.

  • I'm deciding if I should make an appointment or not because this is my last option. May I also ask if this surgery was invasive? Was it a easy going surgery?

    Thanks

  • It is invasive. They put you out and make a "pocket" for th3 implant on you upper buttock. The leads go deep within your pelvis by the pudendal nerve. The incision in probably 1 1/2 inch on my buttock. I think I have an animated video of the procedure. Let me look for that and post it. That was very helpful for me.

  • Here is a link to Dr Peters who pioneered the procedure and trained my doctor. It explains it better than I can. I thought I had saved the video, but can't find it. If you search YouTube for medtronic interstim animated surgery, it should pop up. As far as insurance coverage, it typically isn't covered unless you are having urinary and or fecal incontinence. They usually don't cover for pain only, but Dr Benson's office is so grea. They work through all of that for you.

    beaumont.org/treatments/pud...

  • So I have another questions. Isn't there two pudendal nerves on both sides or is there just one that breaks up to a smaller one? I ask this because where excalty are the leads? Near your butthole on the left and right side?

  • I am relatively new to this site but have suffering with instant pain upon sitting down since 2009. Would you please Tell me the names and locations of the 3 doctors you mentioned. Thank you

  • Dr Kevi Benson, Sioux Falls, SD

    Dr Ken Peters, Beaumint, MI

    Dr Ross, Boston, MA

  • Thank you

  • Does anyone know of a Dr in the U.K. That will do inter-stun implants as discussed above please?

  • Karen,

    I'm not sure since I live in the states. But a good place to start your search might be on the Pudendal Hope website if you haven't been on their webstie yet they have a list of doctors around the world and their area of expertise in dealing with PN. I hope others living in the UK respond to your post. Praying for you in your jouney. Roxie

  • Thank you Roxie, I have looked at the site but it isn't very specific. I hope others in U.K. can give me some advice. I feel I've tried everything but still have no diagnosis for unbearable pain. Thank you for reaching out 😘

  • Have you tried any kind of medication they typically use for nerve pain like, gabepentin, lyrica, effexor, cymbalta, amitrriptyline, etc.? Unfortunately, for the most part from what I read from other peoples' experiences it seems most find improvement comes in the form of multiple forms of treatments. Currently I am using Topamax, which helps with the PN pain along with chronic migraines and my foot neuropathy and the inter-stims for the PN and a low dose of hydrocodone when I travel to work part-time. It seems it's all about managing pain which varies on a daily basis. I haven't had much help with pelvic floor therapis, but I think that might have been because I went before the implants and my pain level was much higher, and would consider trying again. I have to travel about an hour to get to one and that's a big trigger for me which discourages me from trying, but maybe that's an option for you. Don't give up, keep searching and reaching out to others.

  • Hello,

    My name is Deb. Besides very severe PN for 17 years and exhausting all treatment including the stimulater, although my stimulater was inserted at the wrong level T8-T12, I have one question for you. Your foot neuropathy, is it associated with your PN or something else? This is my reason for asking I'm having great difficulty with my legs, both sides including pain, loss of sensation, burning sensation and aching, spasms and last but not least I had complete paralysis happen for temporary time frame 4 times in the last month. I'm going through all kinds of testing now and the doctors are telling me it has nothing to do with PN. BUT when you look at the dermatome of the Pudendal nerve it shows a pattern effecting your legs. I was just curious what your foot neuropathy is from. Thank you and God bless Deb

  • Hi Deb,

    I am sorry for all you have been through and continue to go through. I was diagnosed with idiopathic neuropathy in my feet prior to having my back fused at level l-5, s-1 in 2012. It started out with numbness in the soles of my feet and then went to burning and sometimes felt like stinging or walking on glass. It improved after I healed 18 months out from back surgery but never totally went away. My surgeon was never totally convinced there wasn't something more going on. Fast forward to 2014 when I fell from my bike and I started having a lot of problems with burning down the back of my legs and buttocks, weakness in my legs after sitting, I would feel like my legs were going to implode after extended sitting, squeezing pain around my waist, and eventually diagnosed with PN in December of 2014. Yes, my urogyno says some of his PN patients struggle with neuropathy in their feet and that it is related. Each of us is different, but I did ask that very question to him and that was his response. I will have to say mine is improved. Whether that is because of the back surgery, the inter-stim implants, or a combination of the two, I don't know. It is frustrating for sure, I wish there was a clearer answer for you or that I could be of more help. I hope you get some answers and help in the very near future. God Bless.

  • Thank you so much for your speedy reply. Yes, it's very frustrating. I am now being checked by a neurologist and a rheumatologist. I had blood test done for autoimmune because it runs like wildfire in my family including my mom, my sister, my 2 nieces, my brother and my aunts had it. But I also have a herniated disk. I had another MRI and it didn't change much in the lower L4-L5 region where the herniated disk is but I have a lot of bulges. You can imagine how this is frustrating the hell out of me. My primary care physician thinks it may be my back. Then I had one doctor tell me I'm under too much stress and it's psychosomatic. That I know it's not. Anyway, I have had so many things done and I'm getting really tired. If you know what I mean. 17 years of dealing with this is long enough. Why do you say enough is enough. Not that I'm ever giving up. Never. Lots of prayers to you. Deb. πŸ€—πŸ™πŸŒΉ

  • I'm so sorry...17 years is a very long time. I'm glad you have a strong spirit and aren't giving up and no its not psychosomatic just because they can't figure it out yet. You hang tough and keep your faith. Glad we have one another here to lean on. Please keep us updated. Love, prayers and gentle hugs.

  • I will keep you updated on what my results are. Thank you and lots of extra prayers for everyone today and God bless. DebπŸ‘πŸ™πŸ€™

  • Hi Karen,

    There is a post called "Parental Nerve", started by Gwenisdead 6 days ago asking about sacral stimulators.

    Alaine gave her an excellent reply with a link to the UCLH hospital.

    If you search for her name Gwenisdead, it should provide a link to her post entitled "Parental Nerve".

    I hope that Alaine's reply will help you. You could reply directly to him in that post.

    I hope this helps you; sending all best wishes,

    Sue xx

  • Thank you Sue 😘

You may also like...