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003: All About OAB – Part 2

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Summary

This is the 2nd in a 2-part series on Overactive Bladder. In this second half of our discussion with Steve Gregg, Executive Director for the National Association For Continence, you’ll learn more about treatments for OAB, specifically third-line therapies such as neuromodulation, PTNS, and SNS.

Resources

Overactive Bladder Resource Center

Bladder Diary

Overactive Bladder Downloadable Brochure

NAFC Newsletter

NAFC Message Boards

Transcript

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to life without leaks a podcast by the national association for confidence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians and caregivers, all available at NAFC.org.

This podcast is supported by our sponsor partner, Medtronic, maker of InterStim systems for bladder and bowel control. To learn more about InterStim therapy, visit controlleaks.com.

Welcome back to another episode of Life Without Leaks. I’m Bruce Kassover and today we have with us Steve Greg, the executive director for the National Association for Continence, and Robin Sterne, who’s a longtime associate of the NAFC as well, and today we’re going to continue our discussion about overactive bladder. Welcome Steve. Glad to have you.

Steve Gregg: It’s good to be here, Bruce, with you and Robin again.

Bruce Kassover: Excellent. And Robin. Hello – how are you doing?

Robin Sterne: Hi guys, as always, I’m really excited to be here. I’m always glad that we can help you to manage solutions and treatment options for incontinence.

Bruce Kassover: So Steve, to kick things off, let me just mention to everybody that if you haven’t listened to our previous podcast where we talked about OAB in broader terms, that’s probably a good starting point because today we’re going to be discussing some specific therapies that can be helpful for a lot of patients.

But before we do that, for anybody who hasn’t listened to their previous podcast, can you just give us a really brief summary of what OAB is, who’s affected, what are the symptoms, just to make sure everybody’s up to speed.

Steve Gregg: Sure, Bruce. Overactive bladder affects about 35 million Americans, both men and women. We typically think more along the lines of it being a women’s issue, which is not entirely true. Overactive bladder is just another name for urge-related incontinence. And all that really means to most people is that when I have to go, I have to go right now. And when, I mean, right now, it oftentimes is impossible to manage your bladder to get to a bathroom.

We think that overactive bladder is really caused by the nerves that are innervated into the bladder are just too active and therefore the bladder can’t naturally control itself, so when you got to go, you got to go right now.

Bruce Kassover: Very good. Now, one of the things that we talked about and we’re going to be talking about today are different therapies for the management or the treatment of overactive bladder, and I’m wondering if you want to talk a little bit about what the difference exactly is between managing a condition and treating a condition.

Steve Gregg: Sure most often people will come to NAFC.org and ask about, how do I manage this condition, particularly if I’m not sure how to talk to a doctor yet. And so the management solutions are first and foremost, diet and fluid management, you know, are you drinking beverages that are irritants to your bladder? Caffeine and alcohol are the two that come up a lot. Am I over consuming fluids and therefore I have to go to the bathroom more frequently – in other words, my bladder is full and I have to go. And so oftentimes people will first manage those. Sometimes they’ll do a bladder diary, so they know how often they really go and approximately how much volume they generate.

Secondly, again, before they want to get to a conversation with the physician, they’ll start looking at pelvic floor exercises, think Kegels. And very often you can go to a pelvic floor specialist, a physical therapist. And they will do everything to make sure that those muscles are as good as possible.

If those don’t work, you end up into what is really called the Care Continuum, which are the medical options associated with treatment of overactive bladder. The first medical line are pharmaceutical drugs. There’s some old generics, but there are now two really nice, effective medications on the marketplace.

If those fail, you end up in what are called third line. Third line simply means that that’s the way reimbursement looks at those treatment options. And those are some of the things we’re going to talk about today. If those fail, the tried and true are surgical interventions. I think a lot of people today want to avoid surgery, but there are a lot of treatment options before you get to surgery.

Robin Sterne: Steve, can you explain more in detail? What are third line therapies and how they might be a good solution for certain people?

Steve Gregg: Sure. So the third line therapies are really designed to calm the nerves associated with bladder integrity. There are really three ways you can do this. One is Botox. So Botox is not just for cosmetics.

It’s actually good for a whole wide range of things, but a Botox can be injected and it can calm the nerves. There’s also SNS, which is sacral nerve stimulation. It’s a small little implant. It comes the nerves. And the last one is PTNS, which is percutaneous tibial nerve stimulation. Again, a small little electrode is implanted and it provides a little teeny current that calms the nerves to the bladder.

Bruce Kassover: So in preparation for this, I was looking at a couple of things we’re going to be talking about. And I’ve seen a number of acronyms. You mentioned SNS for sacral nerve stimulation. I’ve also seen a SNM for sacral neuromodulation. Are those the same thing?

Steve Gregg: Those are exactly the same thing. One just talks about how the system works – neuromodulation – the other just says we’re going to stimulate the sacral nerve.

Bruce Kassover: Okay, so with that being said, can you tell us a little bit more about what this therapy actually is, how it works and what’s done to you?

Steve Gregg: Sure. A very small needle about the size of a needle when you get your vaccination is implanted in your leg, it touches the sacral nerve and then an electrical signal is sent and that causes the nerves to the bladder to calm down.

And so they, again, if part of what overactive bladder is, is overactive nerve activity, this causes that to go down and in those candidates that this would be warranted for, it can be very effective.

Bruce Kassover: Now, when you say you’re inserting a needle, it sounds a little painful. Is it painful? Do you feel anything after you have the procedure done?

Steve Gregg: Well, I’ve never had it done, Bruce, but from what I understand, there’s probably a teeny tiny prick. It probably is minimally noticeable. This is not something that is implanted for a long time. And so it’s done in your doctor’s office. It typically has no sensation or feeling at all. If patients do talk about feeling anything, they feel a slight tingling in your leg, sort of like your leg going to sleep, but probably even not that noticeable. So it’s actually very easy to do, and for those that it makes sense, it’s actually very effective.

Bruce Kassover: Yeah, and this is not an experimental treatment. I mean, this has been done like hundreds of thousands of times, hasn’t it?

Steve Gregg: Yeah. I think there are probably close to half a million patients that have had this procedure done with some level of success.

The question about how successful this will be depends a lot on the conversation that you will have with your doctor. And it depends on the severity and the length of time that you’ve been suffering from overactive bladder, but your really good specialist, a urologist or urogynecologist will work through all of that to make sure that you’re the right candidate for this procedure.

Robin Sterne: Steve, are there any side effects with this procedure?

Steve Gregg: There’s always a risk. The risk that we hear most often about is injection site irritation. Your skin can be a little bothered by it, but because it’s so minimally invasive, if the patient feels discomfort, they just stop or try again at some other point. So it’s really pretty simple there are no long-term side effects that I’m aware of.

Bruce Kassover: And are there any people who are just sort of excluded that are not really good candidates for this procedure?

Steve Gregg: You know, there always are, Bruce, and that depends a lot on the conversation that you’ll have with your doctor. And I think we probably have a significant amount of information at NAFC.org about how to make sure you’re having a meaningful conversation with this. It is a minimally invasive procedure, but again, you want to make sure that you’re talking to the doctor about, “Am I right for this? How much will it affect my current condition? When could I start to experience some benefit from this? How long will the benefit last? Is this something that we’ll do on a regular basis for a long period of time? Or will I get better?” Most people don’t really ever get better-better, but you can significantly reduce the number of times and the urgency that you would have trying to get to the bathroom.

Robin Sterne: I hope that we can get possibly a person who has been through it in a future podcast and we can arrest your fears or any information that you want to know. We’ll have someone to discuss it coming up.

Steve Gregg: You know, I hope we can talk to a patient, too. And while the numbers are nice, a half a million, one of the challenges that patients face is oftentimes they go in and talk to their primary care doctor about their condition and primary care doctors have limited time and knowledge about these treatment options.

And so oftentimes patients walk away going, “Gee, there may be a pill that can help me, but there are really no other options.” And what we think is, you can’t give up, you can’t give up, you can never give up because there are treatment options. You just need to find the right doctor who is skilled in this kind of procedure, and they will help you through whether this is right for you.

Robin Sterne: Steve, can you tell us a little bit about the difference between SNM and PTM?

Steve Gregg: You know, it works very similar in both situations. A small needle – electrode – is implanted in the same nerve, the sacral nerve that’s in your leg. If you go in for SNM, a small devices implanted so that you take it with you. If you go in for a PTNS, that’s administered in your doctor’s office.

Typically it takes about 30 minutes in the doctor’s office and you start on a 12-week trial to make sure that this actually works for you.

Bruce Kassover: So Steve, for PTNM, are there any side effects that are, that might be different than what we see from SNM? Anything that people should be aware of that might caution them against it?

Steve Gregg: You know, the only side effects that we typically see are transient or very temporary in nature. It could be a mild pain or some degree of inflammation near where the stimulation is. And sometimes you have, as you have with any kind of needle or vaccination, some form of skin irritation, but that typically is about the most we ever see.

Bruce Kassover: Well that’s great. I mean, it’s really remarkable to hear that there are treatments that have pretty minimal side effects for most people that are pretty easy to administer compared to things like surgery, but that actually generate results, you know, like meaningful results for people. That’s pretty remarkable. I’m a little surprised that things aren’t more widely known. Do you find that people who have OAB are generally really unfamiliar with these or, or do you think that the word is getting out?

Steve Gregg: You know, I think we need to do an awful lot more to tell people that there are treatment options. There are medical treatment options beyond just taking a drug.

And again, there are some new drugs in the marketplace that work pretty well. The challenge with drugs are we just look at how long someone’s likely to continue on drug therapy and they don’t tend to last very long. I think you’ve probably all – and our listeners would recognize – you know, our drug store chains are doing an awful lot to make sure that we keep getting our medications filled appropriately, and that’s across everything – blood pressure and all kinds of drugs for those individuals where the medications don’t work – there are treatment options that are available to them. And unfortunately, many people don’t know. They don’t know how to ask or they’re talking to doctors that this is not really what they do first and foremost. Again, a primary care doctor is most likely not ever going to do either of these third line procedures. You need to find a really good urologist or urogynecologist. And I think even in NAFC.org, our physician finder can help you find somebody that’s in your local area.

Bruce Kassover: Okay, so the doctor finder is at NAFC.org, and I believe that there’s a bunch of other information there as well for people who want to become more familiar with OAB and the various treatment options that are available.

Steve Gregg: So one of the things that we made a very conscious effort in doing was answering questions that we would see routinely. So people will come to NAFC.org and say, “I have this problem. What is it?” And then we can help them talk about the symptoms of stress urinary incontinence or overactive bladder. And then they say, “well, what can I do about it?”

And so, again, the Care Continuum lays out everything from purchasing an absorbent pad, manage your fluid intake, drug medications, and then these third line therapies. And so people want to be really smart about what those options are. And then they ask us, “who can I see, you know, who will take care of me on this?”

And we tend to point to specialists again, urologists, or urogynecologists, and if they say that can’t find one, we oftentimes can help them with that as well. So what is this? What can I do about it? And then how do I talk to this person about finding the meaningful treatment for me? Because again, that’s the point, right?

It’s not every treatment option is perfect for every person, but a really good doctor who will take the time to explain to you what we’re going to do, how we’re going to try it, and how long you’re going to be on this treatment option is really critical to find in the success that most people are looking for.

Robin Sterne: I know that at NAFC.org there are a list of specialists and doctors. Are these available right across the United States?

Steve Gregg: Well, you know, Robin, there’s two ways to think about that question. The medical procedure is available in all 50 states, so it is possible. The number of qualified physicians for these third line therapies depends a lot on what state you’re in.

And one of the things that we typically see are in very populated states in big cities, it’s really easy to find a plethora of doctors who are skilled at this. As we get out into more rural communities, oftentimes there aren’t urologists or urogynecologists out in those communities. And so there is some travel that’s typically involved.

And I hear that from folks that travel two and three hours to go to San Francisco to find some very qualified doctors. I’m sure in the south that’s true. Birmingham, Alabama, for example, has one of the great centers, but not all the way across Alabama has that center like UAB. So the procedure’s available everywhere; finding somebody who can do it for you can be a bit of a challenge.

And again, that’s one of those things that, if you have that problem, you can let us know through memberservices@nafc.org, and we typically can find somebody close to you that will be able to help you find the care that you’re really looking for.

Bruce Kassover: And I guess that may be one of the deciding factors. If you’re looking at it, either of these therapies, if there’s a lot of travel time for you to reach your physician, you might be better off going with an implant rather than the PTNS procedure that would have you go visiting your doctor every week for a period of 12 weeks.

Steve Gregg: You know, it just depends on the severity of the condition. It depends on a variety of things. We’ve said it before: I’m not a medical doctor. I don’t provide medical advice, but those are the kinds of questions, “Doc, I have to travel so far, what’s the right treatment option for me? Doc, I have difficulty with rides, I have a busy career,” and the doctor will work with you to make sure that they find a treatment that is effective, safe and will work for you.

I think I’ve said it and I say it frequently. There’s no reason today to give up. And while I think there are some things that people can do and will naturally do on their own to manage overactive bladder – absorbent products being one of them, multiple pairs of underwear, staying at home or close to a toilet – there are options to explore with a physician that can help you find something that fits into your lifestyle that provides the relief that you’re looking for. It’s out there. So don’t give up.

Bruce Kassover: Excellent. Well, thank you, Steve. I appreciate your time and thank you Robin, I appreciate you being here as well.

We look forward to being back again with more important information about the treatment of incontinence conditions and with the guests that we were referring to earlier – we’ll have patients and physicians on upcoming episodes as well, and we will be talking soon. So thank you everybody.

Robin Sterne: Thank you, Bruce. And thank you again, Steve, for your knowledge and ability to make what could have been a complicated situation into something that’s really easy to understand.

Steve Gregg: Well thank you. That means a lot to us. We work very hard to make sure that folks understand what the condition is and who to see about getting the treatment they deserve.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence.

This podcast was supported by our sponsor partner, Medtronic, makers of the InterStim systems for bladder and bowel control. To learn more about the InterStim systems, visit controlleaks.com.

Our music is “Rainbows” by Kevin MacLeod and can be found online at incompetech.com.

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