Interstim X Medtronic

Wow, gentlemen, I’m impressed with what all of you have been through! Sounds very challenging; I don’t think I’d dare!

@rmconversion you’re already a great member here in our forum because you have provided us with some very detailed information about interstim that I haven’t seen before and the photo is interesting. Thank you for your contributions already; please keep us posted. If this experience has given you new/unusual back and pelvic floor pain, I’d say it must be connected. I think you’re doing the right thing by looking for a potentially better doctor than your current urologist.
 
@rmconversion, thanks for clarifying the multi-wire issue. It is not something I am familiar with. If you're near a city as big as Wichita I would think you'd have more doctors to choose from. I agree with @snow that finding another urologist, just to get another opinion would be worthwhile.

I wish you all the best.
 
@snow, it has been a long haul. I must you are on a long journey, too. Thanks for all the information you have shared. May you find solace in knowing this group is here for you AND that you add so much to it.
 
I have had my Interstim for a bit over two years. It has helped me a lot. Combined with Botox injections, it's gotten me to the point that I am continent much of the time, though not all the time depending on where I am in the Botox cycle.

I started with a four day trial of the basic test device that was placed in the doctor's office with a local anesthetic. I went from there to the permanent implant, which had the lead placed under a local anesthetic before they put me under a general and put the device under the skin of my left flank, above the buttock and belt line. When they did the lead, they initially placed it on the right side of my spine, but they could not get the placement right (as judged by my feedback of the sensations I was feeling) so they switched it to the left side and got the sensation they wanted, a feeling like someone tapping on my perineum. That part of the surgery was fairly painful even with the local anesthetic.

My lead has four wires and is "conditionally MRI safe," suitable for use in 1.5 Tesla machines but not the newer 3 Tesla machines. The Tesla number indicates the strength of the magnetic field of the magnet, which controls the resolution of the machine. I get yearly MRIs to monitor my liver disease, so I waited several years for Medtronic's MRI-safe leads, since making sure I do not have bile duct cancer is more important than managing bladder pain. My urologist brought up Interstim in 2013 or 2014, but I didn't get the device until 2020 when the new leads were finally approved by the FDA.

I chose the non-rechargeable version with an estimated ten year battery life. My thought is that technology improves rapidly, and what's available in 2030 when I need a new battery will be better than the 2020 version, so replacing the device is an opportunity to upgrade. I like not having to charge it - I go months at a time without even thinking about it, now that I've got the program and level set right. If i start getting symptoms, I can go in and change the program and level, but this isn't all that common for me.

The urologist I had at the time was fantastic. I did not get any pressure to go with Interstim, nor any other specific procedure. We discussed the pros and cons of each, and she let me make the final decision and respected that. She retired in 2021, and my new doctor isn't as thorough nor as willing to listen to my input. I'm still seeing if I can get him trained up, though.

If you feel pressure from your doctor, get a second opinion or change doctors. Wichita is roughly the size of Albuquerque where I live, and there are multiple medical groups here with urology practice, plus a number of doctors not associated with one of the big groups. I can go to my insurance website and get a list of the various doctors who take my insurance. I don't know what your insurances situation is, so I don't know how many doctors you have access to, but I do know that many doctors not associated with big groups will take most insurance plans and may be an option for you.

Overall, I'm very satisfied with my Interstim, and I'd do it again.
 
@MezaJarJarBinks I just received a message from Medtronic. They have a link http://www.medtronic.com/locator for a doctor locator and an identification for the doctors who are Center Of Excellence or the better doctors out there. Dr. Samuel J KUYKENDALL is one of the COE doctors. The link does show another doctor in Tulsa, OK that is a COE doctor and is closer to me. None of the Doctors in Wichita are COE doctors.

Thank you again for the help and I hope this info will be of some use for you and others.
 
@snow I have seen enough to know that men have a ways to go to catch up to what women go through. It is really not that bad. I have had a heart cath and an IV filter done and being naked up on a table in the center of a room with all kinds of folks walking around is nothing new for me.

You are a great role model to us as well as a great asset to this community. I will see if I can learn enough from you to be of help but I admit I will most likely fall short or your level. thank you for the compliment and all the help.
 
@fleemoore There are a number of Doctors in the uro group and they do some really good things. But they do not have doctors that specialize. So each doctor does everything for the patients they see. This link from Medtronic shows the doctors that are Center Of Excellence accredited and the best. https://www.medtronic.com/us-en/locator-neuro.html The closest COE doctor to me is in Tulsa.

Thank you for all the help with this.
 
rmconversion said:
Was Broghammer one of your doctors?
No, I have been going to this group from the beginning. I started with Dr. Bock who did some kidney stone surgeries for me. He prescribed "potassium citrate" to prevent them. Unfortunately, potassium citrate is terribly expensive, but it works! No stones since then. When it came to the OAB symptoms, he did some of the preliminary tests and cystoscopies, but then he referred me to Dr. Kuykendall for the other procedures. Dr. Kuykendall did the Interstim and REZUM procedures.

rmconversion said:
I had my DVT worsen when I was on Xarelto. I will be on Warfarin until I die.
I had a TIA stroke and was on warfarin for years. Then, I was put on Pradaxa. Now, I am on Xarelto. I have had heart rhythm problems (mostly SVT) since I was about 10. Then, I started having A-Fib. That led to having a TIA stroke. That led to having radio frequency ablation. And that led to having a pacemaker.
 
@ltapilot Wow that was a lot of great information. Thank you for that. My other implant is MRI conditional to 3.0 Tesla. So it will be a bit of restriction. I keep a card with me now so another one will not be a problem.

Insurance is a state-controlled business. That means it can and does vary. I have spoken to other people in other states and there is a lot of difference in the way things are treated in KS and other states. Just the way of the world. Insurance companies are really powerful in KS as population is low and they can just walk away. KS has had trouble in the past getting companies to provide insurance. Doctors work for the insurance companies these days and they really work hard in KS to get money from insurance companies. I have thought about moving to another state with better doctors. Not much of a draw for a really good doctor to come to Wichita. On the Medtronic doctor locator my doctor is at the top of the list of 3 doctors in Wichita. All 3 are at that same uro group. For a Center Of Excellence really good doctor the closest one is in Tulsa. Then some in OKC and KC. When I had BCBS they excluded the NE corner of the state where KC is for medical care coverage. I am on Medicare with a part D supplemental. My understanding is I can go anywhere in the US. It is just the travel part for follow-up appointments that are difficult. The pressure I felt was from the reps calling me every day and sometimes both reps would call. This is not a level of healthcare I have ever received.

Thank you again for all the really good information.
 
Just getting caught up from stuff this morning. Well, it is out, and I started to feel better late last night. Good to feel better finally. I was feeling pretty good this morning when I still had the PNE going. So that was not it. I was told that the wires in me for the evaluation had one electrode on the end and were smooth and could pull out easy. The wire that will be used for the permanent device will be barbed to prevent it from pulling out and will have 4 electrodes on it. I was thinking about this last night when I was feeling better, and it seems to me the PNE was not really to treat me but rather determine if the real treatment would work. It did work at times, and I think I will try it. As far as doctors go on the Medtronic website, they have a doctor locator. https://www.medtronic.com/us-en/locator-neuro.html That locator lists 3 doctors in Wichita and none of them a Center Of Excellence top doctor. One of the other doctors I have seen before, and he has a very heavy accent that is difficult for me to understand. He is also young and the newest doctor at the group. I have decided to give this a try with my current doctor. I was told that I would be called within the next 2 weeks to schedule the surgery. Past experience is that it will be whenever Medicare approves it. It could be longer than 2 weeks. The health care provider also said that she did not think the rechargeable device was being sold anymore. That I would get the larger device that did not require recharging.

Time to take my dog to the dog park. It has been a week since I have been able to take her there. Take care eveyone and I wish you all great success with your battles.
 
@MezaJarJarBinks I have mild SVT, too. My gym teacher used to yell at me because I wasn’t running around the track fast enough because my heart was acting up but you can imagine she sure didn’t believe me!

I don’t think any of the people who I used to backpack and rock climb with ever believed me when I told then I was having an episode “of this weird heart thing that sometimes I get that I have to wait to pass,” either. I didn’t even know that there was a name for SVT, until one of my cousins almost died from a heart attack when he was 20! He was told it runs in families and to ask around to see if other people in the family have it so they could also be diagnosed. I was so relieved to finally know it wasn’t all in my head! I had a full work up by a cardiologist at UCLA, who deemed my SVT nonthreatening, after many tests. It was a relief! He also taught me about the Vasalva Maneuver, with which now I can typically quickly stop an oncoming SVT episode before it even fully starts. There are a couple of times, however, when the maneuver doesn’t work, and then I know, I just need to be patient and settle down to normalize again.

I don’t think I even told my parents I experienced SVT because I didn’t know what to tell them I was experiencing! I’m so glad I finally figured it out!!!!!
 
snow said:
...the Vasalva Maneuver...
Like you, I never told my parents what was happening. I was only 10 when I had my first episode, and I was able to just wait for it to convert. It wasn't until I was an adult that it became problematic. I went to the ED. The doctor told me to take a deep breath, hold it, and bare down on it for as long as I could. It worked! He didn't give me a name for the maneuver, so maybe that is what you did?

Unfortunately for me, as time went by, I was talking to my wife on the phone, and she got me to realize that I was repeating myself, saying the same thing over-and-over. I immediately called my cardiologist who said to get to the ED. They diagnosed that I had a "Trans-ischemic Attack" (TIA). That was caused by an irregular heartbeat called atrial fibrillation (A-Fib). Blood clots were being formed in my atria when it was beating so fast that the valves didn't have time to close. When a clot finally moved on it would stop in my brain for a brief time and cause a brief stroke.

They treated me with various medications over the years. And my heart rate kept getting slower and slower. Then I had a really bad SVT/A-Fib attack while at my foot doctor's office. They called an ambulance, and I was scheduled for a radio frequency heart ablation to fix the mixed-up signals in my heart. About a year later I had to have a pacemaker implanted.

Anyway, I hope that you are having regular stress tests and seeing your cardiologist regularly, because this can get much worse with time and be fatal.
 
@snow @MezaJarJarBinks So sorry to hear all this. All the hardships you have and you still come here to help others. All I have is to wish you both nothing but the good things going forward.
 
@MezaJarJarBinks Yes, you and I do the same maneuver for SVT :)

The cardiologist I saw at UCLA told me I didn’t need to do follow up, but maybe at least once every 10 years I will do it (so I should do it now). It actually seems like I get episodes less frequently than ever! I’m really grateful to you for sharing your story with me because now I’ll stay on the lookout through the rest of my life.
 
Just a quick update. After the test device was removed and I could take a shower I actually missed the good results part. I went from 6 sheets of TP for a pad to 4 sheets and it was dry for a few hours. symptom's seemed to worsen after the removal of the test device. And after a week are back to about normal with being able to live with my level of control. I have had no episodes of going and not knowing it until I felt the wetness other places. Just little sudden leaks. Triggered by walking, running water, cold, other movement, or just because.

Still no word on a surgery date. I am used to the slowness of the Medicare system by now though.
 
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