Interstim or botox thoughts?

[Edgewater]

My version of U-IC (car crash) is not affected by either method. There is a study underway in Switzerland that bypasses the L5/S1 spinal connections, but it will be at least four more years for the study to complete and the first to receive the bypass will be those with lower limb connection issues.

 

[mirrored22]

So my urologist recommended interstim but I am really worried about the complications and rate of ineffectiveness. It sounds like it loses effectiveness by 5 years for many and about a 1/3 end up with some sort of complication. It doesn’t sound like it is so effective that it eliminates needing diapers for most. 50% effective means I just go from 4 diapers to 2 diapers instead. It just decreases the amounts. He recommended against Botox due to some retention at baseline. So I think I’m going to hold out on interstim for a while and see if some other better technology comes along. Has anyone else decided against doing more and just accept the status quo.

This is pretty much where I landed as well. It has the potential to introduce new complications and doesn't eliminate the issues completely. (I do know that 50% is the minimum threshold that they use to install the device permanently, so if you don't get at least 50% during the test run, they don't continue with the permanent install.) But I also know that it can be really effective. I've spoken to a few people who have had dramatic improvements from the Interstim devices, going from not being able to leave the house due to incontinence to being able to actually live their lives in one case! So I don't want to dismiss the effectiveness of these treatments for people at all.

For me personally, I feel like my overactive bladder issues aren't so bad that it is absolutely necessary. I also have more steps that I can try with different lifestyle changes (quitting smoking, losing weight, getting into better shape, caffeine reduction, etc.) before I go to that drastic of a route. Being only 36, I really want to enjoy what little is left of my "youth" before having devices implanted or having to deal with Botox and catheters considering I'm sure the prostate will become a problem later. I also haven't even tried things like pelvic floor relaxation therapy either, but my urologist doesn't seem to think either of these will be effective and is pushing me towards the Interstim or PTNS options. To answer you question, no, you are not alone!

 

[EcoIncon]

I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered here.

BLUF: I've avoided drugs to manage incontinence but from research and personal experience, I'd recommend at least trying Botox once.

My first round of Botox was last fall and similar to @Pino it was life changing for about 3 months. From 8 days after the procedure until the 4th month, I had zero daytime episodes of incontinence. While I've come to accept diapers as a good solution for my issues, I can't tell you how liberating it was to get a break from them (it'd been about 20 years since I'd been in public without protection). In addition to not having the diapers, the relief from feeling like I have to go to the bathroom as soon as 5 minutes after the last time was so nice. I can't wait till 3 weeks from now when I get my second dose.

I have some thoughts and learnings related to administration of Botox:

• Important note on Botox: Doses range from 100 units to 300 units.
  • Many urologists start with the 300 unit dose because it is the most effective and generally lasts the full 6 months that are required between doses. This dose has a retention risk over 20% but you don't need to start there.
  • I started with 100 units because that dose has a low risk of retention (~4%). A 4% risk of ISC for a month or two was so worth a shot at continence for me.
  • I'm getting a 200 unit dose this time which adds a 5% risk of retention for folks that tolerated 100 units well. I'll take my chances as it increases the odds of getting 5-6 months of relief.
  • Maybe if 200 units goes well, I'll try the 300 unit dose. I don't understand why more urologists are not taking this more conservative approach to Botox therapy. Maybe because it gives very few people relief for the full 6 month dosing interval... I was happy with 3 months and I'm happy that I didn't take the retention risk.
• Botox can be administered to men by some providers without general anesthesia. My first administration was done under general anesthesia... I was having surgery anyway so I got a BOGO deal for my anesthesiologist - they didn't have any other coupon codes available so getting both done at the same time was my only option . I'm getting my next dose without general anesthesia so if anyone is interested, I'll post after that experience - I'll also try to remember to ask what allows them to do without general anesthesia versus those that mandate it and report back.
• The only thing I noted about the treatment was a little burning when I peed for about the first 24 hours.

InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.

 

[mirrored22]

I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered here.

BLUF: I've avoided drugs to manage incontinence but from research and personal experience, I'd recommend at least trying Botox once.

My first round of Botox was last fall and similar to @Pino it was life changing for about 3 months. From 8 days after the procedure until the 4th month, I had zero daytime episodes of incontinence. While I've come to accept diapers as a good solution for my issues, I can't tell you how liberating it was to get a break from them (it'd been about 20 years since I'd been in public without protection). In addition to not having the diapers, the relief from feeling like I have to go to the bathroom as soon as 5 minutes after the last time was so nice. I can't wait till 3 weeks from now when I get my second dose.

I have some thoughts and learnings related to administration of Botox:

• Important note on Botox:Doses range from 100 units to 300 units.
  • Many urologists start with the 300 unit dose because it is the most effective and generally lasts the full 6 months that are required between doses. This dose has a retention risk over 20% but you don't need to start there.
  • I started with 100 units because that dose has a low risk of retention (~4%). A 4% risk of ISC for a month or two was so worth a shot at continence for me.
  • I'm getting a 200 unit dose this time which adds a 5% risk of retention for folks that tolerated 100 units well. I'll take my chances as it increases the odds of getting 5-6 months of relief.
  • Maybe if 200 units goes well, I'll try the 300 unit dose. I don't understand why more urologists are not taking this more conservative approach to Botox therapy. Maybe because it gives very few people relief for the full 6 month dosing interval... I was happy with 3 months and I'm happy that I didn't take the retention risk.
• Botox can be administered to men by some providers without general anesthesia. My first administration was done under general anesthesia... I was having surgery anyway so I got a BOGO deal for my anesthesiologist - they didn't have any other coupon codes available so getting both done at the same time was my only option . I'm getting my next dose without general anesthesia so if anyone is interested, I'll post after that experience - I'll also try to remember to ask what allows them to do without general anesthesia versus those that mandate it and report back.
• The only thing I noted about the treatment was a little burning when I peed for about the first 24 hours.

InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.

Thanks for that insight, I really appreciate it. I would love to hear how the 200 works for you. I can't even imagine what life would be like without these urges!

 

[daylight]

I agree with @EcoIncon and others, if you (@mirrored22) are a candidate for botox, you should consider it. Experiences differ, had it done w/o anesthesia, a bunch of pinches, and a bit sore afterwards (1-2 days). Agree, it was liberating, even considering that within two weeks I was in full retention and needed to self cath. for 5 months. It was a good vacation not having to wear diapers. Would I do it again? Planning but, my work doesn't allow for easy breaks to catheterize.

My biggest takeaway was that it helped with the pelvic/bladder pain.

InterStem was offered up to me when it first hit the market some 20-ish years ago, it has evolved with MRI safe implants, charging, etc. I think the decision is personal and choices of others should not greatly influence yours. Degrees of success is also personal, going from a diaper to underwear or a pad to nothing can be a great improvement.