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I had a caudal neurostimulator placed today

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  • I had a caudal neurostimulator placed today

    Hi - I went to a urologist today that is the best in the USA for women. He implanted a caudal neurostimulator in my sacral nerves. It was done in the outpt surgery center, so thank the Lord, I slept thru it, all I remember is him helping me turn on my belly and lay prone, then the anesthesiologist put me to sleep. Anyway, this is not interstim, because it innervates (i am a nurse) all of the sacral nerves - so that the entire perineum- anus to clitoris is affected. When I woke up, the incisions to my back were painful and I was given Fentanyl, so that eased up, but here is the best part, I did not feel the painful urge to void, I had received a whole liter if IV fluid and was ok. After a few minutes I did go void, but it wasn't with that 'I need to go it hurts so much' feeling that I had all day yesterday flying across the continent of america and being in the window seat and climbing across 2 people every 30 minutes to pee. What it feels like is that my perineum is kind of tremor mode, so that I don't 'feel' a clenched up pelvic/perineum. So, I wait out here in sunny California for a week to see if this 'trial' works and if 'yes' then have the permanent placed next Monday. As you can be sure I was scared and had tears in my eyes while the IV had to be restarted a second time. But because I have the kindest and most experienced urologist in America, I did just great. So, those of you who pray, please pray with me that I have reached the end of 2 years of IC pain/urgency. a friend to all of you, Aileen

  • #2
    I hope this will be the answer for you!! I am so happy for you that it seems to be working thus far. Could you share the name of the urologist? I would love to learn more about him and this type of procedure.


    • #3
      Well Wishes!
      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at: and

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


      • #4
        Best wises,to you Alieen! I hope it all works out for you!


        • #5
          I have never had this done, so I dont really know much about it, but I hope that it works for you and gives you alot of relief.

          Sending well wishes your way!



          • #6
            warmest regards

            Here's to sending you the warmest of regards, a speedy recovery, and perhaps some bits of hope mingled with faith and joy too! I Hope that the procedure turns out to be a wonderful success!
            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


            • #7
              Please tell me more about the device that you got vs. the interstim. I read what you said but please tell me more. Thanks. Georgia
              Faith is not believing God can; Faith is believing God will!


              • #8

                wow. I will keep you in my thoughts and prayers. California is not so sunny this week. You are brave.


                • #9
                  just talked to Aileen-akrose

                  Unfortunately she has devloped a staph infection after the trial implant and is taking antibiotics. She didn't seem to have the hoped for results with the trial, and with the addition of the infection, most likely will not go ahead with the permanent implant.
                  Last edited by Briza; 04-04-2007, 05:21 PM.


                  • #10

                    I am so sorry to hear this. It breaks my heart. I hope she find something and quick. Has she thought about seeing Lowell Parsons in San Diego CA. He is great. Good Luck.


                    • #11
                      hi -it is now 4 days since I had

                      this neurostimulator placed in my back (sacrum). Honestly, I am still having urgency, frequency, voiding small amounts. Like 100-150ml every 30-45 min. When I turn up the stimulator from 1.4 to 1.5 it feels like a fork is in my perineum. I turn it back down, because I can't tolerate that. With the infection in my skin near the lead placement, it looks like he won't be able to place the permanent on MOnday, and I think this is an answer to prayer. I just want one thing---- to be free of this defective bladder/urethra-- and have a life like Lesa and Eva and Judith, and others I have met here who are not on here anymore, because they are out busy doing other things rather than thinking about their urgency, frequency and pain. (those of you who pra y to God, please pray that when I tell Dr. Raz this stimulator isn't working, he is willing and ready to go ahead with what I have been asking for since last July - cystourethrectomy, because I am ready. Thanks to all of you for listening. Lesa- especially you!!!Aileen


                      • #12
                        I'm sorry the stimulator didn't work out as planned and hope the infection is taken care of quickly , after you traveled all that way. Remember we are ALL here for you, so keep us posted on whatever happens next.


                        • #13