www.incontinentsupport.org

So, My doctor's office called yesterday while I was at the ER/ED for bowel pain and set up a date for the trial with Axonics sacral neuromodulation.

After spending the time since I first agreed to try this back on the 21st of December until now I found a few things that I really want answers to.


The first question is how is this going to help me?

The second question is how many men have had success with this?

Third, does my case seem to indicate that this will help enough to be worth it?

Fourth, there are a lot of "Cons to even the trial, Are there enough Pros to even do this?"

Fith, This was ruled out for me twice before, Why now do you feel this should be tried?

Sith, I am 37 and Axonics has not been around that long, How certain are they about their battery life because at my age I will need another few surgeries to replace their batteries?

Last, What if I say no now? Then what can we do?

I have talked these questions out in my head a few times and even told the lady that called that I have big apprehensions about this.

Axonics claims that 90% of people see a 50% improvement in their symptoms but that is not good enough for me.

I just do not know that at my age this makes any sense to even try. My Colon doctor even admitted that I will still likely need an ostomy to fix everything wrong with me so...

_________________
Life is like a camera
Focus of what is important
Capture the good times
Develop from the negatives
Take another shot!

I think this is something you really need to talk to your doctor and rep about. I’ve never heard of an interstim used for bowel issues. I had a nerve stimulator and it was a waste of time. Mine was for pain in my ankle (before I had my amputation) and I eventually had it removed. I’m not trying to persuade you one way or another as it is ultimately your decision. I would question why they are now saying you should do it when two times before they said it wouldn’t be beneficial. Wishing you well with whatever you decide.

Your many questions indicate that you need to do a LOT of research before committing to this procedure. Google some medical studies. Although it works very well for some, many users report unsatisfactory experiences. Remember, what the surgeon calls "satisfactory" and what the patient calls "satisfactory" may not be the same thing. Some users report that the device helps some, but not enough. Below is an extract from my draft book on managing incontinence.

The InterStim electrical stimulator device, formally known as The Medtronic InterStim Therapy for Urinary Control, was approved for use in the U.S. in 1997. A small device is surgically implanted under the skin in the lower back or abdomen. It transmits mild painless electrical pulses to the sacral nerve located just above the tailbone. The InterStim device reduces urge incontinence (the inability to defer urination or defecation). A handheld device is used to adjust the stimulation. The use of the InterStim is reversible and can be discontinued with no permanent damage although minor surgery is necessary to remove it. Minor surgery is required about every five+ years to replace the implanted battery. There are newer versions of the battery that are rechargeable and last much longer. The device reduced symptoms of urge incontinence in a majority of users, with about a third reporting significant reduction in incontinence episodes. About one half of the participants in one clinical study reported adverse events, including pain, infection, or movement of the wire, with one-third having the device surgically removed. Most health insurance will cover the cost of this procedure.

--John
(double incontinent)

So, Today the hospital reached out for me to call my insurance (Medicaid) about this operation as they need to discuss benefits with me. Big thing is that the Axonics therapy sacral neuromodulation is not approved for bowel issues by FDA yet. I had an issue with my insurance before I had Botox because there is nothing on my records that tells all that is going on so they just look at the dyssynergic defecation that it says that this treatment is not for that.

In studies sacral neuromodulation for dyssynergic defecation has been done for people with other mobility issues but not someone that was/still is as active as I am.

I do not think that the phone call is going to go well unless there is an RN to talk to. And again I still have a lot of unanswerd questions about all of this.

This is Copied from the notes my doctor posted about our last visit.

"Plan / Recommendations
Extensive discussion about his symptoms and next steps. Counseled patients on sacral neural modulators, two-stage implant, r/b/a for fecal incontinence. We discussed that it may not improve his abdominal pain however could help with continence. It does not prevent an ostomy as a possibility for symptom management if he is also refractory to the modulator. The patient highlighted his focus on QoL (Quality of life: added by Me) and the disability burden this disease process has had on him. He is amenable to a trial of the sacral neural modulator. Consent obtained in clinic."

Again He does not think this is the cure-all for what is going on with me. Still thinks an ostomy will be needed and doesn't think this is going to do anything for pain.

Just do not know that this is worth it if it is not going to help what I need help with.

_________________
Life is like a camera
Focus of what is important
Capture the good times
Develop from the negatives
Take another shot!

I'm not very trusting of medical company representatives because they are in the business of selling the company's products. No disrespect really, but I look for the motivation of the source of the advice....be it medical, financial, insurance provider or any other source that stands to gain financially. Your doctor say it at best won't be a complete cure.

"Axonics claims that 90% of people see a 50% improvement in their symptoms but that is not good enough for me."
...so from this I read of that 90% sample, 50% saw no change or improvement. Don't know what happened to the missing 10%....perhaps they were cured?

I'm with you-it is good to hope, but this company would have to do much better to sell me on the product.