My InterStim

I hope you will share!

Here are my blog posts about my interstim. If you have any questions for me please e-mail me via my blog contact tab. I was looking for anyone to give me their experience when I was deciding on whether or not to get InterStim so I want to be there to tell others my story! 

Note: I do get a lot of e-mails asking me specific questions, which is fine, but please know that I can only answer with my experience…I am NOT a doctor. I am not able to tell you why you may have the the experience and/or symptoms you do as we are all different. i can only give you m y experience. 

InterStim: http://btrbb.com/?p=129

Day ONE after stage ONE: http://btrbb.com/?p=130

Day TWO after stage ONE: http://btrbb.com/?p=131

The hole in my back and almost fainting: http://btrbb.com/?p=133

My remote after stage 2: http://btrbb.com/?p=134

Day THREE after stage TWO InterStim: http://btrbb.com/?p=135

Day FIVE after stage TWO InsterStim: http://btrbb.com/?p=136

I worked out for 60 minutes thanks to InterStim: http://btrbb.com/?p=139

Healing nicely after stage TWO InterStim: http://btrbb.com/?p=144

Working out 16 days after stage TWO InterStim: http://btrbb.com/?p=147

34 days after stage TWO InterStim: http://btrbb.com/?p=156

50 days after stage TWO InterStim: http://btrbb.com/?p=166

Working out after InterStim surgery (YouTube): http://youtu.be/XlnJ-F4PL30

2-years after InterStim: http://btrbb.com/?p=2124

I just added a “working out with InterStim” category on my Healthy Journey blog. The link to that category is here.


 

 

 

 

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14 thoughts on “My InterStim

  1. Thank you for sharing your story! I enjoy reading actual blog posts about people and their lives!

  2. Hi! I was reading your blog on the InterStim placement that you had done.
    First of all, THANKS for posting your story. I, like you, only found good
    stories or absolute horror stories. My doctors have told me that InterStim
    is my only option but I am just not sure it is right for me. He agreed to
    do it in day hospital. I had to beg him because he wanted to do it in the
    office. My first question is did you have your stage 1 part placed in the
    office or OR? Were you asleep for it the whole time if it was done in the
    OR? I have complete retention. I am no longer able to pee on my own due to
    some type of nerve damage. As to what caused the nerve damage, they don’t
    seem to know. So I am having to Catheterize myself every time I need to go.
    Watching the InterStim placement being done online is absolutely
    horrifying. My doctor seems to think that the InterStim will fix this
    problem completely. Reading the horror stories online has completely turned
    me off. Being only 23 and having this problem for the last 4 (almost 5)
    years, I am completely exhausted. For stage 2, was it done in the OR? It
    looks very painful. Did they give you anything for pain for both stages? We
    have tried Flomax, Rapaflo, Bethanacol. Due to retention, I have a UTI or
    Pyelonephritis every 2-3 months and something has to give. Due to
    infections, I’ve had 2 hospital stays this year. Also, I have had 10
    lithotripsys for kidney stones as well and 2 urethral stents. I actually
    had the InterStim surgery scheduled and canceled it because of the
    uncertainty and I was scared to death. Also, I read that it sort of shocks
    you. Do you feel the device shocking or pulsating when it is stimulating?
    Any advise and information you have on the actual procedure would be
    GREATLY appreciated. Again, thanks so much for putting your story out
    there. I am so appreciative.
    Thanks,
    Samantha Brown, Scared to death InterStim Candidate ;) hehe

    • I am so sorry I have not commented back. I had over 1000 comments that went to spam automatically and I just realized that this past couple weeks. If you did not contact me via my contact tab please do so if you still have questions. I don’t like to ignore people and I didn’t realize I was per my spam folder. I have learned to check that folder every day now!

  3. Hi! I have lots of questions about InterStim. First of all, THANK you for posting your story. I like you have found that you either see the good stories or the horrifying ones. Its so nice to read your story by stages with such honesty. I have been told that this is my only option. I have severe retention. It is to the point that I can no longer pee on my on ( not trying to be graphic). I have to cath to pee and they believe that the retention is caused by some sort of nerve damage. As to what caused the nerve damage, no one seems to know. I have been to MUSC as well and they couldn’t offer me anything different than the doctors here are offering me so, I am saving the long trips and using my wonderful doctors here. I am just not sure InterStim is the right thing for me. I am 23 years old and have had urological issues for the past 4, almost 5 years now. I have a UTI or pyelonephritis every 2-3 months due to the retention. I have had 10 Lithotripsys for kidney stones and 2 urethral stents and 2 hospital stays this year due to infections. Did they do stage 1 on you in the office or the OR? My doctor agreed to do it in day hospital after begging him and telling him I absolutely couldn’t handle it in the office. If your were in the OR, were you fully asleep for the procedure? It looks so painful. Did they give you pain medicine to keep you comfortable at home for both stages ( I am a wimp)? For stage 2, was that placed in the office or the OR? There are sooooo many horror stories online. I actually had the procedure scheduled and canceled it after having watched it done to someone online and the uncertainty of the whole procedure. I just don’t know if it is for me. We have tried all types of medicine with no response. Some of the ones we have tried have been Flomax, Rapaflo, and Bethanacol. None have worked. I was also reading that some people feel a shock or sensation as it is stimulating that nerve. Can you feel it? I am just physically and mentally exhausted and any advise and answers you could give me would be greatly appreciated.
    Samantha Brown, a scared to death InterStim candidate ;)

    • Sorry for the real late reply. I had a whole bunch of comments go to spam and I did not notice until I had over 1000 in there. Goodness that spam folder sucks. If you have not already please contact me via my contact tab if you still have questions. Again sorry it has taken so long to reply. I just assumed no one was really reading this page Now I see that there were and my spam folder hid the comments form me!

  4. Hi Tawna,
    I’ve had my interstim a month now for urgency and frequency. My urgency and frequency has definitely improved but I still get bad days (mainly around my period or if I get constipated).
    Do you have bad days where you pee constantly for no reason and then the next day your fine?
    I also noticed that every day around 3 pm- 8 pm, my frequency gets bad. I have no clue why this is! Do you have any insight? I get off work at 5 so maybe the drive home makes me stressed or my job stressed me out? I have no clue.
    I feel like I could use some reprogramming but my rep is sometimes useless. How do you know when it’s appropriate for a reprogram?
    I too have that bladder anxiety where I constantly think about my bladder, I’m still trying to get over that but it’s so hard!

    • Sorry for the late reply, I have been out on a very long road trip and just got home. Yes I do have good and bad days all the time. Some days I pee endlessly and others I hardly do at all. I notice that the more I think about it, the more I pee. Ugh! So could it be that starting at 3:00 you have programmed your body to think about going? Or you think about needing to go in the car…once that mind set starts that is the hardest thing to let go. It has taken me 2.5 years to try and master the mind games. Once I say, hmmm I think I might need to go then I go and keep going because now I am thinking about it. IDK if that is what you are doing but that is what I do and then those are the days that turn into frequency.

      I programs whenever I feel like it. I played with every setting for the first few weeks. Once you have stage 2, then the rep is useless and so is your doctor. I figured why not try every programs from the lowest setting and then take a few days to turn it up. That way I would know for sure that they had me on the right program. I don’t know if that was the right way but that is what I did. I found that they did have me on the right program and then I manipulated the number. But i wanted to be sure so I played with all the settings.

      I just read your last line…yes you have anxiety like me. Driving int he car is a bad time for that anxiety because we a re programmed to always be looking for a bathroom. I just had to say out loud for months “you don’t have to go.” After a while it worked but it took months. Thing is…you have to believe yourself. It is hard!

  5. I’m glad this is working out for you. I have a similar device for nerve pain in my foot. I thought I already left a commet but don’t see it. Anyways, I never knew there was one for this purpose. Hope hings keep going well for you. I’m happy with mine except tha I cannot have an MRI which is a concern as I’m having shoulder problems and need one.

  6. I have a similar product in my back for nerve pain condition in my foot. I’ve had much relief. My biggest complaint is that I cannot have an MRI. This s distressing because I’m having shoulder problems and they can’t tell what is wrong without an MRI. I’m glad yours is working for you

  7. I received the Interstim implant on Monday, Oct. 15, 2012. My urologist prescribed me a round of antibiotics and 20 vicodin to take every 6 hours for the pain. I was out of work Mon-Thurs and returned to work on Friday. The first night I was in a lot of pain, as expected. It has been healing nicely. I am still a bit sore, which is normal, as I was told it will be sore for two weeks. The first two days I did not have any urinary relief. I had the same results with the trial interstim, but then I was only urinating 4-5 times per day and 0-1 times per night. I have so far had the same results with the permanent surgery. Before, I was having extreme urgency and multiple accidents per month. I was going to the restroom at least 10 times per day and 3 times per night. I completely stopped going out for drinks with friends on the weekends because I was unable to enjoy myself since I had to take bathroom breaks every 10-15 minutes. I am thrilled that I decided to do the surgery. So far, so good!

    • Thanks for sharing your story Tiha. For me it has been a god send. I know I have met some lately that it has not been and my heart aches for them. It is nice to hear some other positive stories too! Good luck on yours too!

  8. Hi Tawna,

    I have been doing research on the Interstim. I found your website so I thought I’d email you to ask a question because I couldn’t find it in your blog posts. I just had the Interstim Trial procedure today (Thursday) for urinary frequency but I don’t have incontinence or retention. So far, no immediate results. I still have the feeling of needing to urinate all of the time. I have it on the setting my Medtronic rep and the documentation told me to have it on to where I can feel a small amount of stimulation. It’s on 6. I read some of your blog posts about day one and two of your trial and you stated that you didn’t have any relief from your symptoms. There weren’t any other posts after those for your trial phase. How long did it take for you to get any relief? I was thinking that this would start helping pretty immediately. I’m only have the trial phase in until Monday. I get discouraged easily because nothing else has worked for me. My doctor basically
    talked me into this because he said I was out of options. Any feedback you have would be greatly appreciated! I hate to bug my Medtronic rep this early in the game.

    Thanks,
    Paula

    • Paula:

      I know I did not write much that week of trial one. I remember it not feeling great to sit so that is probably why.
      I do recall that it was about day 4-5 that i found some relief. I did have to call my medtronic rep, a lot. Don’t worry about calling, just do it. That is what they are there for. I did have to adjust a few times to find my relief.

      I did not have 100% better. When they say the goal is 50% that is close to what I had…about 50%. For me it was the incontinence that helped the most. I am still leak free so I swear by it.

      Now the biggest thing is the head games I would play with myself. I found that I was making myself go a lot more because I was so used to going and having that damn external battery pack made me think about going all the time. I literally had to tell myself I did not have to go and that took a few months to get better.

      Now I only frequently go when I drink coffee or soda or a lot of water. Before I had to go whether I drank or not. So that is the hardest thing in my opinion. Thinking yo have to go, so going a lot and then getting frustrated that the InterStim is not working. It does not work for everyone. I know I got lucky. I still “go” more then most people, but my leaking is gone and now that my head does not play so many games with me I do go less.

      You can e-mail me too if you want a more personal conversation. My e-mail is on the contact tab. I hope you can find relief too. I know how you feel and it sucks.

      Again, don’t feel bad about bugging your rep, bug the crap out of them…you and insurance are paying a pretty penny for the surgery and you deserve to try all the settings. You gotta know before you commit. My doctor told me I could take a second week if I needed too. If I would have not found relief on that 4-5th day I was ready to do a second week no matter how uncomfortable I was. I didn’t not want to give it my “all.”

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