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  • Honest feedback please

    I am scheduled for my trial on 5/21. I would really like to know how that surgery impacts your daily functioning and what limits are imposed for the trial period.

    Also, how quickly will you know if it's working?? Once you find a "setting" that works, do you ever have to re-adjust it?

    What did you find most comforting or helpful in your first few days after surgery? What advice might you have as far as being prepared for your recovery.

    Thanks so much!

    tacy

  • #2
    My trial is comming right up too! I'm waiting to get the date from my uro. I am very curious too!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #3
      Right after my trial, my lower back/upper butt area was pretty sore for about four days. Generally, you want to rest for the first few days, and then you can get back to more activity -- but for the entire trial period, you should avoid bending, twisting, and heavy lifting. These motions can move your leads around inside your body, which would be a bad thing.

      As for daily life, you will not be able to get the lower back/butt area wet AT ALL. My husband installed one of those handheld showerheads in our bathroom for me, and to wash, I would sit on a plastic stool in the bath tub and spray/suds up/spray the parts of myself that I could get wet. This prevented any water from getting back there. For hair washing, I put a cushion on the floor next to the tub, knelt down to bend over the tub gently, and used the same sprayer.

      You should get used to washing this way, because if you do have the permanent implant done, it will be at least a week after that surgery before you can get your back wet... I know it's kinda gross, but, man, does it feel GREAT to take the first REAL shower after all that sponge bathing!

      Clothing -- make sure you have a lot of loose, elastic-waist pants. Waistbands on jeans and things tend to bother the incisions for both trial and permanent implant. Plus, during the trial, you'll have this big old cord coming out of your back end, and the elastic waists tend not to pull on it as much. When I was going through this, Yvette told me to get some sweatshirts with the kangaroo pocket in the front; this was a great place to put the external generator during the trial. I could even sleep with it in there -- that way, I didn't have to roll over on it, and I knew it would not go flying onto the floor and pull the leads out.

      As for things to find comforting, make sure you have some pain control for the first few days after surgery. Also, make sure you have taken time off to just rest for several days. Do things you like -- read, watch movies, eat ice cream... anything so you can relax and heal!

      On to settings on the generator. It depends -- mine got set just about right immediately, because I had a near perfect lead insertion. All I did was turn it up and down a little. However, some people need to change pulse amplitude, which lead pulses harder, etc -- if you need to do that, your doc and Medtronic rep will help you.

      My trial began working the VERY DAY I got it put in. Others say it takes a few days, a few setting changes, or both. It really, really depends on the person, but I hope you're both like me and hit the jackpot

      For further info, just go into the "Neurostimulation - Undergoing Trials or Surgery" and search for my posts. I chronicled my entire experience from a few days before the trial to the day my stitches from the permanent implant came out. The posts are by me, and they are called "Interstim Diary -- Day 1, 2, etc." They have a lot of detailed info about my experience....

      Good luck!!!!
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        thanks for the great info. I use a TENS unit a lot for pain control. Will I still be able to use that?

        The showering thing sounds horrible!! Guess I'm staying in for a few weeks!

        Is sleeping difficult? I already have a permanent sup-pubic catheter in front making it hard to sleep that way. This will be in my back!

        Some days I totally FREAK out about this and others I feel better. I was given odds of 50% success with the trial.

        Do you get some type of medical card for airport security?

        Thanks for any feedback you have. I am a "need to know what to expect person"

        Comment


        • #5
          thanks for the great info. I use a TENS unit a lot for pain control. Will I still be able to use that?

          No, unfortunately you cannot use your TENS unit. You can't use anything that puts electrical or magnetic pulses through your body -- no diathermy, no nothing. MRI's of the area are out of the question as well.

          The showering thing sounds horrible!! Guess I'm staying in for a few weeks!

          It wasn't too bad... not as good as a regular shower, but not too bad. The handheld showerhead helped bunches, and I was able to wash pretty well with it!

          Is sleeping difficult? I already have a permanent sup-pubic catheter in front making it hard to sleep that way. This will be in my back!

          It wasn't difficult for me. I slept on my sides. For the first few days after the trial and implantation, I'd wake up immediately if I rolled onto my back because it was very sore, but in less than a week I could roll onto my back for short periods. Now, it's been over two months since my permanent implant, and I can sleep on my back just fine. However, I do find it uncomfortable to lay on my back on the floor... but nice comfy beds are fine

          Do you get some type of medical card for airport security?

          Yes, Medtronic gives you a card with your name and doc's name on it, and it states you have an implanted device that may set off airport and other security systems. Be aware that you may set off store anti-theft systems sometimes after you get this thing... and that the systems can actually turn your Stim off. The old Stims used to get reprogrammed by them, even, but the new ones don't have that problem anymore

          If it'll help, here is the link to the post I wrote about my trial lead implant itself:
          http://www.ic-network.com/forum/showthread.php?t=35392

          And here is the link to the post I wrote about my first night with the trial:
          http://www.ic-network.org/forum/showthread.php?t=35407
          Last edited by Sarojini; 04-27-2007, 09:23 AM.
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            I am having mine redone we are going to do a trial on May 2nd and the implant on the 16th. I was sore a few days, but also drove within a couple days after each surgery. I did shower 2 days after surgery, my doctor said it was fine as long as I faced the water. My hubby bought me 2 lab/rotty puppies 2 days after my trial, I had no fenced in yard. I did quite well with them.
            Over all besides the surgery pain, I had no problems.
            'The will of God will never take you where the Grace of God will not protect you.'

            Comment


            • #7
              Wow, Cindy, Jake is just getting cuter all the time! Is that your daughter holding him in your avatar picture? I don't get how anyone could bear to give up that little darling boy. You should be one proud mama!

              Oh, and good luck with your interstim replacement, too! I meant to say that up front, but that little cutie-pie is just too distracting!
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                thank you, yes those are my kids, Ashley and Jake this one was taken today after we cut his hair.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  I hope someone has the answer to this question, cause if I have to ask the Medtronics rep I'll be embarassed and my dh will DIE. But, can you use a vibrator in any way? Internal/external. Battery or electric operated??

                  Comment


                  • #10
                    I am not laughing at your question, I swear... When I first got mine, my hubby told me that I had my own built in vibrator now

                    your answer is yes.. so please don't die on me...

                    hey come join us at www.whensexhurts.com
                    'The will of God will never take you where the Grace of God will not protect you.'

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