Interstim X Medtronic

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Hello all. New guy here and a somewhat old topic. I am 66 a male and had urine leakage most all my life. That has progressed over the years. Flowmax did not work. Myrbetriq helped for a while but started to fail. Alfuzosin was added and restored early Myrbetriq results for a short time. I have 2 issues. First is I have sudden urges that may or may not be controlled. They happen walking or other moving around, running water, and sometimes just out of nowhere. The other is urination without knowing it until I feel the urine on my body. The second is a case of an urge, sometimes very small and thinking it was stopped. No feeling of urination. the medications controlled the second more severe urination and reduced the small leaks to a manageable level with pads of toilet paper. Lately just more tp and some return of the second urination without feeling it. Doctor did a scope of my bladder. PSA is 1. I am diabetic with neuropathy and am on blood thinners for a DVT. My doctor after the scope said it all looked good and said a PNE was the next step. I was told some wires would be put in my lower back and a nerve evaluation would be made. There was a lot more to that than I was told. So, lesson learned. Time for research. Research I found reported people with diabetes or on blood thinners were not candidates for PNE. The surgery was 3 days ago, and this has been some really bad days. Pain and feeling bad. Trouble walking and sick feeling. Thing is it does reduce my leaks a lot. My tp pads are mostly dry for 24 hours. I have cut the size by a 1/3. The big thing is I have the feeling I am being played on this and was purposely led to believe that the evaluation would only last the time in surgery. I have not one but two people calling me every day (yes Saturday and Sunday) trying to help me adjust the controller to get better results. One was in the surgery center and showed me how to use the controller (smart phone) but are more like snake oil salesmen. In my web search I did find that side severe effects where at over 30% with this as compared to under 30% with the medications I was on. I am trying to get information on this to help me decide if to get the Interstim X or not. It does seem to work but the side effects are really doing a number on me. The last surgery I had I had a spinal block as I do not do well with general. That would not be an option for this. That would be another downside and more suffering for me. It would be an easy choice if it didn't work as well as it has. A concern I have is the difficulty I now have to urinate. A much weaker stream. They keep saying when I get the adjustment correct it will be easier to start and I will have a strong stream. I just have a feeling I am being played though. I don't know if it is my doctor or if he just has to do what he is told. Obvious to me there is some money behind this pushing it somewhere. Choice of evils it seems for me. Diaper, caths, AUS, or this. I tried pads before and had a rash even with the name brand ones that were advertised to prevent it. Hince the tp. Easy to change and available in restrooms. But with the meds failing that will not be able to keep up with it. Just looking for more information on this and maybe even other options. Thank you for taking the time to read this. And another bigger thanks if you take the time to reply.
 
@rmconversion Hello sir; welcome to the forum! Thank you for your thorough introduction. There are a number of men here who do have an interstim. There is one gentleman who is actually on his second one because he had his first one for so long. As you probably know, there are a couple of kinds. There have also been people for whom they don’t work and are more trouble than they’re worth. I hope those men will respond to you here. In the meantime, you can use the search magnifier button to look for past posts on this topic.

Sorry to hear you got rashes from pads. I get rashes from some Band-Aids and pretty much all of us get rashes from our diapers/pads here snd there so we use a barrier cream to prevent the rash from developing in the first place. We have lots of advice for you on that topic if you’re interested in trying. You’re quite lucky you’ve been able to get by with TP so far! Wearing diapers isn’t the end of the world; it feels humiliating, but it can help to look at it as a tool like wearing glasses or using a cane. Diapers actually liberate you from all the anxiety about leaking. So in the long run, they can end up being soothing in a way. But it is a *huge* emotional adjustment that definitely takes time. It took me years to get used to it and I was kind of stuck in bed until I found this forum, and was able to feel less alone.

There is a lot of advice here about AUSs and various types of catheters. I hope you’ll find all the advice you’re looking for.
 
@rmconversion, I am 72 and have had 4 Interstim devices. The first one was in 2017 and it work for almost two years, but it did not help with the frequent UTIs I had. It stopped working after two years. I moved on to a different urologist who told me I should have had a TURP procedure before the Interstim was implanted. He removed 65% of my prostate and sent me to a colleague whose specialty was OAB. She took out the malfunctioning Interstim device and put it in a new one. It worked for a few weeks and stopped working. It was discovered it was improperly implanted as the lead was too short and it pulled out and stuck through my skin. She did not know Interstim has three different length leads. She installed a third device which worked for two weeks and then stopped working. I moved on to a different urologist who felt Interstim was the way to go. He took out the other doctor's implant and found it was implanted with a very sharp angle that prevented the device from working properly. All of these procedures were done under general anesthesia. When this last doctor implanted my fourth Interstim he did so with me being sedated. I was amazed that he could do that. I mentioned that so you know that is possible. I am currently working with the Medtronic rep. to get this new device's settings so that it works as it should.

Through all of these procedures, I knew that the device would not cure my urgency/frequency issues, but it would improve them to no less than 50%. I did a lot of research on another device made by Axonic, but the last surgeon felt Medtronic's Interstim was still worth another try. Although I am still working to finalize the setting so that I get relief, I feel that will happen as the rep. is convinced we need to find the correct settings.

Finally, if you feel like you're getting played, get another urologist to evaluate your situation. Hopefully, you will find someone who you can trust.

As usual, @snow has great advice. Follow the links she has provided to see how this topic has been covered in this forum.

Feel free to communicate through this forum as it is a GREAT place to learn from the experiences of others.

Best to you.

fleemoore
 
@snow Thank you as you found a thread that I had not. My search found 3 also we had 2 the same. I guess i should have placed a question or a lot of them as I have many. I am concerned about the side effects. I have pain that is moving around. I have trouble walking. My Legs are weak I have trouble urinating at times. And % days after the procedure feel generally bad. The day of the procedure and the day after I mostly just slept I was feeling so bad. Is this something that does do away or do they just keep leading you on for time to adjust to and accept the side effects? I have had healthcare workers call me after a procedure to check on me. But never had one or in this case 2 different people call me every day. Did others have this? Very unusual for health care where I live. So, did other experience this? Is it because of the side effects that they have to do this to get people to have the permanent procedure? Is the Interstim better than the PNE. Worse? My doctor is in the only Uro group in my area. To get a better doctor and health care I would need to leave my state. As in the reading of the other threads and the post above doctor skill and most likely experience seems to make a big difference. If this is so who are the really good doctors to go to for this? I have more but this will do for now, Thank you again for you reply.
 
@fleemoore Thank you for your reply. My above reply has some of the things I am concerned about. Do you have difficulty urinating with this? Do you have any other side effects with this. I get that the company wants as many people to get this product as possible. Did you get that feeling that your doctor was pushing this because of incentives from the device manufacture? Did you get an unusual amount of follow up or contact to try to sell you on this? With my DVT I have to stop my blood thinners and bridge with large painful shots for any surgery. And any narcotic meds give me trouble. As I said the last surgery before the PNE I had a spinal block without sedation and did well but that is not an option for me. To have multiple surgeries will be extremely hard on me. What about MRI and other test with this in place? I just keep having this feeling that the device manufacture is pushing this really hard. Like a company that knows there is a problem with a product, and they are trying to get as much money out of a bad product as they can. Or I need to find a really good doctor for this. I had another device implanted 5 years ago and at my local uro group I was advised that many men who had the device implanted later had it removed as the results were so bad. Nationally the device has a n over 90% approval for the patients. Maybe I need to do a search for a doctor who specializes in this.
 
@snow,
Thanks for finding those links for our newest member.

@rmconversion,
I am 76 now and I have OAB (overactive bladder) and enlarged prostate. I have been using the Medtronic Interstim since about 2015. Like everyone else, I had to get the test wires first to see if I would have any benefit before doing the permanent implant. I am on my third implant now, so it is not unusual to have more than one attempt to get it right.

The new models are now MRI friendly, which I consider important. It looks exactly like my Medtronic heart pacemaker too.

In one of the links that @snow found for you I advised that you consider where you want the implant buried. Consider where you have enough fat to cushion it. I have no fat in the butt area, so I had it placed above my belt line on the right side of my spine. That way it doesn't hurt when I sit or lie on my side in bed.

I hope you have a skilled surgeon with lots of experience, and that you get the relief you need.
 
@MezaJarJarBinks Thank you for your reply. Good news on the MRI friendly. My other implant had a Conditional MRI certificate that came with it to provide to healthcare professionals. Do they provide a card or certificate when you get the device?

I did see your posts in the other threads about placement. I have been giving it some thought. I am worried about pulling the wires out or problem of that nature. With my PNE I have been on very low activity. I get it out tomorrow and greatly look forward to it as of the trouble I have been having. How much activity can you have with Interstim X in place? Any activities you have to avoid?

I live near the largest city in the area. That is where the uro group is located. The doctors do go out to smaller cities and patients from farther out then have less distance to get care. For this reason, all the doctors in the group do everything for the patients they treat. No one specializes in any one thing like you might find with larger populated areas. The doctors do many different procedures and surgeries so experience with some of them are very low. I have traveled out of state twice. Once to use a specialist and once because none of the doctors in the uro group did the more difficult procedure I needed. This might be a reason why I am having the level of difficulty I am and the reason they have someone and sometimes 2 people call me everyday.
 
@ThatFLGuy should have some information for you. I’m tagging him here so hopefully he’ll see your response and answer you. He had a bad response and did not move forward with the final product.
 
@rmconversion, I have copied and pasted below so I can respond to your questions:

Do you have difficulty urinating with this?
Urgency and frequency are still issues, especially urgency. Urinating runs with no problem.

Do you have any other side effects with this?
No, other than waiting for the incisions to heal which is normal.


I get that the company wants as many people to get this product as possible. Did you get that feeling that your doctor was pushing this because of incentives from the device manufacture?
When I went to the final/current urologist I was looking to have him implant an Axonic device. He convinced me that it did not offer the adjustability of the Medtronic device. I learned about this doctor from Axonics, so I was surprised when he recommended I have another Interstim and not the Axonic.

No one tried to sell me on this other than the first urologist back in 2017. He was a young urologist who I later felt was interested in doing surgeries. He had me do a urodynamics test (which was NO fun!) and from there wanted to implant the Interstim. He did not consider me having the TURP procedure. The urologist after him said I must first my BPH condition before dealing with the OAB issue.

Did you get an unusual amount of follow-up or contact to try to sell you on this?
The Interstim rep. has been outstanding with her follow-up after this most recent procedure. She is not a salesperson in any way. She simply wanted to get the device working to its optimum potential. We have a phone appointment tomorrow at 1 PM to do any adjustments to the new implant.

With my DVT I have to stop my blood thinners and bridge with large painful shots for any surgery. And any narcotic meds give me trouble. As I said the last surgery before the PNE I had a spinal block without sedation and did well but that is not an option for me. To have multiple surgeries will be extremely hard on me.
I take Eliquis, a blood thinner, to deal with my A-fib. I had to stop that 3 days before each of the Interstim procedures. This was approved by my cardiologist. I did have concerns about possibly having a stroke while off the Eliquis, but, thankfully, nothing bad happened.

I understand frequent surgeries. In mid-January, I had emergency hydrocelectomy surgery to deal with infected and swollen testicles. (Again, no fun!) I'm not sure what your situation is, but the Interstim implant is very straightforward if you find a doctor who has done several of them. They typically take from 60 to 90 minutes. You know your body and situation so obviously that you'll need to take into consideration.


What about MRI and other test with this in place? I just keep having this feeling that the device manufacture is pushing this really hard. Like a company that knows there is a problem with a product, and they are trying to get as much money out of a bad product as they can. Or I need to find a really good doctor for this. I had another device implanted 5 years ago and at my local uro group I was advised that many men who had the device implanted later had it removed as the results were so bad. Nationally the device has a n over 90% approval for the patients. Maybe I need to do a search for a doctor who specializes in this.

The newest Interstim device is MRI-compatible. Should you need an MRI with an Interstim implant just make sure you take the Medtronic card you will receive in the mail. The MRI tech will not do an MRI unless they can confirm the device is compatible. I learned this the hard way.

It is vital that you find "a doctor who specializes in this." As I've explained I visited three urologists before I found the man I now see. He has sixteen years of experience and just as importantly, that doctor needs to have an experienced Medtronic Interstim representative who will support you after the Interstim is implanted.


Lastly, are you aware that you will need to go through two phases in order to have a permanent implant? In stage #1 a lead will be placed running from the nerve in your lower back (S3 foramina) to one of your butt cheeks or possibly in a fatty area near just below your beltline. That will be in place for two weeks during which time you will keep a diary to show the effect it has on your urinary condition. If the diary shows that you would benefit from a permanent implant then the lead will be placed under your skin and attached to the battery. According to research, most centers define the success of the implant as the improvement of an incontinence score of at least 50% and report success rates between 67% to 96%.

I hope this helps, rmconversion.
 
rmconversion said:
I did see your posts in the other threads about placement. I have been giving it some thought. I am worried about pulling the wires out or problem of that nature. With my PNE I have been on very low activity. I get it out tomorrow and greatly look forward to it as of the trouble I have been having. How much activity can you have with Interstim X in place? Any activities you have to avoid?
Click to expand...
I didn't have any trouble with the test device like you mentioned. I'm glad you will be getting it removed soon.

Of course, when you have the permanent implant you will want to give it plenty of time to integrate with your body (or heal). Afterwards I was warned about extreme body stretching, but I think the wire is sewn in such a way that it has some slack. It doesn't bother me much, if at all.

I had not seen the terminology for "Interstim X", so I looked it up. I found that it was the Interstim that is NOT rechargeable. That's a good thing. As it is, you will have to be careful to keep both the cell phone and the communicator devices charged by plugging them into a charger. But you sure wouldn't want to have to charge the implant, because that would mean YOU would have to be plugged into a wall for a period of time. :(

I forgot to reply about the MRI card:
Yes, I do have a card. There is a procedure in the cell phone app where you can switch the implant to "OFF" and prepare for an MRI, but I have not played with it yet.
 
rmconversion said:
As in the reading of the other threads and the post above doctor skill and most likely experience seems to make a big difference. If this is so who are the really good doctors to go to for this?
Click to expand...
I live in the Kansas City, Missouri Metro Area. My group has offices on both sides of the state line.

Kansas City Urology Care
Dr. Samuel J KUYKENDALL
816-531-1234

The Medtronic sales rep tells me my doctor is one of the best in the country.
 
@fleemoore Thank you for taking all the time for that long reply. I have the frequent urges and the PNE (first stage) does not really improve that it just seems to make my ability to go less and then leak less. I switched sides yesterday. Left side was very low settings and right side is 3x the left. Doth seemed to require increasing regularly to get results.

I have to hold BT 5 days prior and take 2 large painful shots a day except for the day before and day of the procedure. Then the day after I am back on the 2 a day and BT until I hit my target range again. Trips to the doc to check levels every few days.

In my original post about this PNE not being for patients with diabetic neuropathy or on Blood thinners it was talking about the basic version that you mention that is done in a doctor's office. The advanced version is a 3 wire and a temporary version of the permanent unit. I was in a surgery center on a bed, and they stuck the needles in my back/butt crack and had me tell them what I felt when they stimulated them. I have the smart phone controller for it. I have had to resist the urge to just turn it off a few times. This all comes out tomorrow no matter what. The permanent model has a different 4 something single probe that goes to the nerve on whichever side worked best.

I sent a message to Medtronic's asking if they had a list of the most skilled doctor's for this or a list of doctor's they sell the most devices to. Have to see what they say.

Thanks again.
 
@MezaJarJarBinks The women who has been calling me every day (either her or another guy or both) said the battery had a 15-year life span. But checking the web site it says the rechargeable version is the 15-year battery. They call it the micro system. Web site says just over 10 years for the non-rechargeable battery. I will have to find out about this and cost.

@MezaJarJarBinks Wow that is really doable. I am just outside Wichita and was sent to Broghammer at KU Med last year for surgery that none of the local doctors do. Was Broghammer one of your doctor's? I have a message into Medtronic's asking for a list of best doctors or a list of best customers they sell the most units to. Being on Medicare now it is my understanding that I can go to whoever I want and am not tied to my local doctors. Nice to have an option that close. I am really wanting to turn this thing off and find out how much of my pain and bad feeling is from it.

The most extreme stretching I do is when I wake up. The have me tapped up and I still have to be careful as I get stabs of pain is I hit something or move or stretch a certain way. Can't wait to get in the shower tomorrow.

Thank you again.
 
Thank you for taking all the time for that long reply. You're welcome.


I have the frequent urges and the PNE (first stage) does not really improve that it just seems to make my ability to go less and then leak less. I switched sides yesterday. Left side was very low settings and right side is 3x the left. Doth seemed to require increasing regularly to get results.

Is your PNE an actual Medtronic Interstim device or something else? I don't understand changing from the left side to the right side. That makes me think yours is not Interstim as I never did anything like that.

I have to hold BT 5 days prior and take 2 large painful shots a day except for the day before and day of the procedure. Then the day after I am back on the 2 a day and BT until I hit my target range again. Trips to the doc to check levels every few days.

It sounds like your BT is Coumadin. I used that years ago but got it changed, first to Xarelto and then to Elisquis, to avoid the blood tests that determined what my number was.

In my original post about this PNE not being for patients with diabetic neuropathy or on Blood thinners it was talking about the basic version that you mention that is done in a doctor's office. The advanced version is a 3 wire and a temporary version of the permanent unit.

I have no idea what the 3 wire version is. Interstim has one lead as I mentioned previously. Does this 3 wire thing have a name or a company that makes it?


I was in a surgery center on a bed, and they stuck the needles in my back/butt crack and had me tell them what I felt when they stimulated them.

Each of my four devices has been in the hospital OR. The surgeon along with the Interstim rep. probe the lower back area to find one of the two S3 foramina. Once that is found one of your big toes reacts to the sensation caused and typically a butt cheek will show a response. That indicates where the nerve is that controls the bladder. Once that's determined the lead has kind of like little fish hooks that get attached to that nerve and the battery is then attached. In phase #1 the battery is attached to a belt wrapped around your waste. If that shows effect improvement over a two-week period, the battery is implanted as I've mentioned previously.


I have the smartphone controller for it. I have had to resist the urge to just turn it off a few times. This all comes out tomorrow no matter what. The permanent model has a different 4 something single probe that goes to the nerve on whichever side worked best.

Good luck with that removal. I really wonder how this process has been done to you when you state, "I was in a surgery center on a bed, and they stuck the needles in my back/butt crack and had me tell them what I felt when they stimulated them." That sounds barbaric to me.

I sent a message to Medtronic's asking if they had a list of the most skilled doctor's for this or a list of doctor's they sell the most devices to. Have to see what they say.

May I ask where you live, rmconversion?

fleemoore

Thanks again.
 
@fleemoore The are 2 types of first stage devices. And I assume they are both made by Medronic. The first is a single wire basic PNE that was said to be placed in the doctor's office. The second is an advanced 3 wire unit. That requires a surgery center. The wires come up under the skin and then over to the controller/battery which is on an elastic belt. So the only thing in my body is the wires. The smart phone is used to adjust the controller/battery. They put the wires in on both sides and then see which is best. Tomorrow everything will be removed. If I decide to get this they will do the surgery under general anesthesia and a different (can't remember exactly but they called it a 4 something)one wire will be placed on whatever the best side was and the Interstim device will be placed under the skin somewhere.
You had the basic one wire first stage evaluation. Mine was the advanced 3 wire evaluation. https://www.medtronic.com/us-en/hea...modulation/education-training/evaluation.html

I had my DVT worsen when I was on Xarelto. I will be on Warfarin until I die.

Actually they rolled my bed from my bay into a procedure room and I layed down on the table face down. they draped my butt/lower back and prepped it. They positioned an x-ray machine so they could see where they were probing. I was numbed with local injections and then they started placing the wires or probes. First time was my anus puckering. Second was low on my left buttock. Third was not quite as low on my right buttock. It was a bit painful as I am sure they did not want to numb the nerve they were looking for. Everything was taped up and I cannot get any thing wet. Just wash cloth body cleaning. I am glad it is not summer and that it is only 5 days vs. 2 weeks. Yesterday I was at 1.something and the pulses were really fast and sharp. They had me change to the right side and the pulse is slower and thumping. I am at 3.3 on this. What happens is it works for a while when I feel the pulse. As that goes away and I don't feel it the improvements go away also. On the left side I only felt it in my lower buttock. But I had pain in my feet and legs and back. After switching sides I felt the pulses in my right hamstrings and penis and have some pain in my pelvic floor. Yesterday or the day before with the continued increase of the stimulation I actually cut my pad size a 1/3. But that is back today as I am not increasing stimulation.

I am in KS just ouside the city of Wichita.

I hope this helps you understand and thank you for your help.
 
@fleemoore I will try to attach a photo I had taken when I returned home so I would know where everything was to avoid problems.
3c50b1bcbc9ef05f629911056c5e0c2a.jpg
 
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