Thank you for you post and the ongoing updates. My mom is going for the axonics therapy next, has tried botox numerous times as well with no relief. I see the toll it is taking on her and I pray you find relief soon 🙏🏽
I appreciate you sharing your own axonics experience. I am also recently new to the therapy and my experiences seem to be very similar to yours. It's been extremely frustrating but I hope it gets better for us.
I’m sorry to hear you’re experiencing similar troubles to me. It really is so frustrating, even more so not knowing a reason as to why it isn’t doing what it should. How many programmes have you tried?
I appreciate the sympathy. My trial lasted about a week back in December of 2020, and I got pretty good results from the trial. I went from using the bathroom multiple times in an hour to about once every 3 hours, so I felt it was a significant improvement for me. But after getting the actual implant, my results haven't been so great. I feel like my symptoms are almost just as bad as they were prior to getting the trial device implanted. Like you have mentioned, it is just so frustrating because we had evidence that the trial implant did work, and now I feel like the real implant is not making much of a difference. I believe that I have tried 3 programs so far. Every time I ask my Axonics Rep why are we having similar results to the trial and he explains that I can't compare the trial implant device to the actual implant device because it's like comparing apples and oranges, meaning that the trial implant has only 1 tined lead wire with 1 electrode but the permanent implant has 1 tined lead wire with 4 electrodes, which gives Axonics multiple options to deliver the stimulation therapy with multiple programs. So he is really saying that the permanent implant should work even better than the external trial implant, but obviously that has not been the case for us.
I really hope you find a programme that works for you! The results are just life changing. I was very similar to you. I could go up to 4/5 in one hour if my bladder was on one! During the trial I went from going to the toilet 17+ times a day down to 7! It took away all desperation sensations and it was just pure magic! Im trying to keep positive and hope that I hear from them soon with an appointment for a new wire. Stay positive x
@@aprilmiles1541 Everyday it does feel like a struggle, but I do appreciate the inspiration & support. I hope your upcoming procedure to change your wire provide you with relief. I will continue to work with my Axonics Rep to see if anything gets better. I still have another 6 to 7 months before I get to 1 year with the implant so I'm trying to be patient. Good luck and please keep us updated with any progress.
I have the Axonics implant now for 2 years... Before I got it, I was using the bathroom about 18-19 times a day... After getting the implant, I was down to using the bathroom about 9 times a day... I was down from 3-4 times a night to only 1 time... It helped great for a while.. I charge it every 1st and 15th of the month... and it takes about 30 minutes to charge up doing it this way. I'm not at 2 times a night and that now seems to be my new normal. I and right now on level 4 lights on. When I had an issue and was going 3-4 times in the night.. they had me turn off the implant for about 3 days and then turn it back on.. it helped bring me back to 2 times a night... But I am better with this implant. I can go do my grocery shopping without having to find a bathroom... I can work in the yard for 2 hours and not have to run to the bathroom... I'd like to have it down the 1 time a night, but am happy with how it has helped me from what I was doing... I had a really hard time going to the store for groceries before I got it... Good luck with yours and hope you can get back better. Mine isn't perfect but it is so much better than I was without it
Thank you so much for posting these videos. I've been searching online for Axonics experiences and found very little information (that is not provided by the company itself). I read the comments and saw that you have already tried Botox injection, are there other treatments that you are thinking about trying just in case Axonics fails? But hopefully, the reset will work for you since you had an amazing experience during the trial. I really feel your frustration (not only about the device but also about the long and uncertain time that you have to wait from problems to be fixed). Hang in there, we'll get through this!
I’m so pleased you’ve found them helpful ☺️ I have tried EVERYTHING. I have had on going treatments, procedures and medications for the past 15 years with no success! This was the last option for me and I just couldn’t believe my luck when it actually worked and by that, I felt it completely fixed all of my issues! Just INCREDIBLE! I can’t wait for the day I get an appointment to get a new wire and get it working again. How about you? Have you tried other treatments? Do have a look on the axonics website too x
Hi April, my names Adam and I am booked in at UCLH for my stage 1 this month. I’d be really interested to know whether there are any updates from you and whether you managed to get back in to have the wire repositioned. Your videos are a great help so thanks for posting. I too have a very overactive bladder and can sympathise with the anxiety that goes with this.
I truly truly hope you will be able to very very soon to have your wire changed , I assume hospitals are going crazy with this pandemic, I am sending a huge hug and will pray for you to get back to normal asap!
@@aprilmiles1541 in seeing other testimonials don't think this or the Interstim would be a good idea for me with my lower back issues. May try botox. I hope things improve for you. You have a great smile btw, so now to make your bladder smile too 😊
Do you feel any improvement at all? If you can rate from 0 to 10, how much do you give? I have the same problem and I know how you feel. I am going to have the trial implant in a few months. Thank you for sharing
I would say 2. It depends, each day can be different. The trial was a full 10/10!! It relieved my urgency, frequency and anxiety. Just amazing! I’m sure you will have amazing results too. Tip - tape the wire that comes out of the battery to you and make sure the belt is always tight. This is where it all went wrong for me :(
I would say it varies for me between 2 & 3. The trial worked great for me also and would rate that my trial around 9. I have OAB with urinary urgency & urinary frequency. I also think it is worth a try especially if all else has failed up to now. Good luck & wishing you great results.
It sound weird that it worked at the beginning. I'm not sure if it help you both or not. For me, viagra and cialis help me to relax the bladder. Actually the doctor told me that both medications will not going to work for me and they didn't give me the meds. I have to say that I have erectile dysfunction in order to get that meds. I was so frustrated to give a shot to try that meds. I did some research that this medication give some significant improvement on people with oab. I try viagra and cialis but cialis works betters. I feel almost 30-50% improvement. However, I want to stay away from taking meds if I can. Both medication works better than oab meds for me. I was planning to combine this treatments if the implant doesn't give me the result that I expected.
I believe in the power of prayer. I will keep praying for you. Not sure what you believe, but look up healing scriptures online or in your Bible and meditate on them. You will find peace. Jesus loves you and I do too. God Bless You! Keep me posted.🙏🏼♥️
Hi beautiful, Have you ever tried Botox for your bladder? I hear it may help overactive bladder. I am thinking above trying it. I have a friend with MS. She has the Axonics and has too turn it off while sleeping. I guess it bothers her. I have MS and bladder issues. Hope you do an update soon.❤️
@@aprilmiles1541 sorry to hear that. Why is it taking so long for the wire reset? It has been a long time. I will keep praying for you. Wish I could meet you.
My bladder changes it’s mind from day to day 🙃 an average day would be around 17-20 times. If I have a bad one, I can add to this with sometimes going 4-5 times in one hour. This bad reaction can be triggered by just hydrating myself with half a glass of water 😑 It honestly makes absolutely no sense! The best way I can reduce the times I visit the loo or any bad episodes is by just not drinking anything, which I do for days out etc, resulting in a stinking headache and feeling awful at the end of the day! How about you?
@@celicka11 yes I do! I can go before I leave the house for example and then 5 minutes later be desperate to go again. Makes no sense! Oh wow 30 times daily 🙈
I am in the same boat. I can go and have to go again within 5, next 10, or 15 minutes. It's very aggravating. I had a Pelvic Floor Therapist propose trying double voiding during the same visit to the bathroom. I have tried that technique multiple times but doesn't seem to help fight off the urgency & frequency. Its hard for me to find a balance between drinking too much to too little water or fluids. I want to stay hydrated and flush any toxins out of my bladder. During the times where I drank nothing or very little I still get the urge to go. So either way is still bad for me.
