Pudendal Nerve Inter-Stim Implant

[RLH356]

If anyone has the permanent inter-stim implant by the PN, I would love to hear about your experience...how it has helped with pain, limitations you have experienced, ect. I had the trial sacral implant done with no success. I am currently in my 3rd week of the trial implant next to the pudendal nerve waiting for insurance approval to implant the permanent modulators. Any advice or sharing of your experience would be greatly appreciated.

[StevenM]

Hi, I am based in London and had a permanent sacral nerve stimulator (Medtronics) implanted four years ago. It is not a miracle cure, but it has helped me and I am very pleased that I went ahead with it.

There are different settings, band widths and pulses so that you can regulate and alter the sensations that are given off.

So far there have been no limitations in terms of what I can and cannot do in my everyday life as a result of the implant.

I have not had a battery change yet - that will happen soon I imagine, but by all accounts it is a straightforward procedure.

As you will be aware, every patient is different and every patient's pain is different, so it is not for everybody. Your consultant may offer you a second trial implant if the first one has not helped and then a decision will be made as to whether a permanent one may help you.

Good luck!

[RLH356 in reply to StevenM]

Thank you for sharing your thoughts. As you said, everyone is different but it was reassuring to hear of your positive experience. Lord willing, if our insurance agrees to pay for the permanent implant, we will move forward. Like you said, it's not a miracle cure, but I am experiencing a reduction in pudendal nerve pain for which I am very thankful.

[Pepper1977 in reply to RLH356]

I had a trial about a year ago with No success. I then went into pelvic floor physical therapy, stopped all sitting, used suppositories with gabapentin, Valium and lidocaine and oral 10mg nortripelyene. I'm almost normal. I have bad days now but not like before. A pudendal nerve block reset the nerve as well. If you're not in the Hope close Facebook group I would suggest joining. Some people had stims implanted with success and others not. It depends like the other person said. I chose not to do it try everything in my power to heal in some way to live. Katy Bowman restore exercises have helped some people along with rolfing

[Matilda1304 in reply to Pepper1977]

Hi, how are you going ? Did nerve heal with your treatment?

[DeeBettyBoop in reply to StevenM]

I had the Medtronic as well, it did nothing for for me at all and I had it removed. Then found out why it didn’t work for me.... it’s not for the treatment of Pudendal Neuralgia. It’s for the treatment of bladder frequency and bladder incontinence. I’m sorry to be the one to tell you this. But there IS an interstem device out there that IS FOR PN. I’ve learned recently the name of it is Stimwave. You may want to consider getting your Medtronic out such as I did. Also have you tried RHEO INJECTIONS? That is, stem cell injections? Look into these other options. Because the Medtronic interstem is NOT the proper device for PN. I’m just trying to help you.

[RLH356]

Thank you so much Pepper for your input and suggestions. I am so thrilled to hear of someone who is actually better from this horrid condition. I'm not on FaceBook, but have heard there are some good PN groups that I would probably benefit from joining...thanks for the suggestion. I have been on all of the meds you mentioned but had to stop them as I am extremely sensitive to medications. I haven't tried Lidocaine though and have been thinking of asking my dr if I could try it. May I ask if you use the topical or a patch and how often you apply? I have also tried PT for 8 weeks with little effect other than she made me extremely aware that I need to breathe from my abdomen and relax my pelvic floor, and to switch to cotton undies, stop using strong detergent in the laundry and soap in the private area, which were all helpful. My PN block caused me to flare, but now with the inter-stim things are calming down a bit. Again, thanks for your input...I will check out the group on FaceBook before I make a final decision on the permanent implant. I wish you continued improvement!

[Hidden]

It saved my life! But you must invest in your stim and how you will use it. As you use the stim, you change and therefore you have to change the way you use it. It's helped me progress enormously. It has restored much quality of life. I would rate my PN as quite severe, everyone wrote me off years ago. I'm still hopeful and believe that I am still making progress in teeny steps.

Here's my stim story:

pudendalnerve.com.au/2014/0...

Good luck, stay hopeful!

[RLH356]

Hi Soula,

I feel like I already know you. Eight months ago when my PT suspected PN I started searching for answers and I found your website and read your entire story. Thank you for responding and your encouraging words...they mean so much coming from a fellow sufferer. I am into my third week of the trial and just the past two days have been a turning point of improvement for me and the little glimmer of hope I had is becoming larger every day. My doctor did a steroid block the day before the implant surgery to confirm diagnosis and I believe it caused me to flare a couple weeks, but things are settling down now. My doctor said out of every 5 women that are sent to him with suspected PN, only 1 has it. However, he feels it is under diagnosed because drs aren't adequately trained to recognize it. Inter-Stim implants next to the pudendal nerve has been much more effective for me than the sacral was. Because I have bilateral PN, Lord willing, I will have two modulators implanted. Anyone searching for an option I would encourage them to look into it. Thank you Soula for being a voice for all of us who suffer with this condition. I wish you continued healing and that you are able to have the strength to continue to be used in the medical community. God Bless!

[Carrie142]

I had the first half done two weeks ago today. I've had PN for over four years. Nothing seemed to work. I've ha many injections including Botox. My pain level stayed at 10 every day. All I could do was lay in bed with an ice pack and that helped a little. Pain pills and vaginal Valium didn't help much either. I got the interstim and on the first day my pain was gone. I am getting the second part done September 20th and I thank god everyday for this. I highly recommend it for anyone with this pain. The new implant is much better than the old one. Good luck and please let us know how you are doing. I suggest you see a urologist that deals wit PN.

[RLH356 in reply to Carrie142]

Hi Carrie, That is a great response to the trial! So happy for you! My pain level was 8-10 daily as well until I had bilateral pudendal interstims implanted around 18 months ago. I would say my experience is a 50 -70% improvement. May I ask if you are from the states and who is doing your surgery. Also, is your implant at the sacral level or directly by the pudendal nerve. My leads are located directly by the pudendal nerves on both sides. I wish you the very best outcome with your permanent implant. It is always so encouraging to hear of such positive results. Please keep us posted with your ongoing experience. God bless.

[Matilda1304 in reply to Carrie142]

Hi , how is the implant going? What type did you get? Thanks

[delandra1966]

I have had an interstim in for PN since 2011. It has helped a lot. I have had the battery replaced once. It was the only thing that has helped me.

[MY000]

I'm new on here, but your post caught my attention. I had the InterStim trial with very mixed results. They want to do an out patient surgery to try again. I am very hesitant as the initial trial left me with terrible pain which I have come to understand is from the Purdendal Nerve, Cant sit without pain. Because of this I am reluctant to do another trial. I am seeing a PFPT but can't get in for 2 months. Gabapentin is the only thing that dulls this, but I don't want to take because of the possible side effect of dementia. Can you update what has helped? Thank you.

[RLH356]

I have had two Medtronic inter-stim implants by the pudendal nerves for over 5 years with good success. Ihave bilateral PN. It's not perfect, I still have pain, but it's better than without them and have never regretted having it done. I will be having the Medtronic stims removed in April and Axonic ones put in. They have just recently been FDA approved and are about a third the size of my current ones and if needed, you can have an MRI done with these implants. I have lost about 40 pounds since my original surgery making them very close to the surface and they move around and are uncomfortable when rolling over in bed. To be sure I need two stims, my doctor had me turn each one off, one at at a time for a one week period to see what my pain level was like. That's how I know they are definitely helping me because when I turned them off my pain level went up on both sides. Everyone is different and a lot of people say they don't make it through the trial period. I tried the sacral stims and that failed for me. All you can do it try and they have made huge improvements over the last year. My doctor is in South Dakota and the doctor that trained him is in Michigan. They implant the leads next to the pudendal nerve which is more successful. I have to travel 6 hours to get to him but they are very accommodating to make your trips as few as possible and work with you over the phone. They also do all the insurance approval work for you. He and his staff are very caring and compassionate. Message me if you have specific questions as I don't think I'm suppose to share more than that. I pray you find relief, don't give up, it takes time to find what works for you. God bless.

[dylandaniel]

For more information about InterStim, you can check out my content, I'm sure it will help.

interstim.net/