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  • New doctor says Interstim...

    I saw my new uro yesterday. He is young, funny, and more compassionate than any doctor I have ever had in my life. He made my other doctor look like a hack. He look at my treatments so far and actually laughed out loud when he saw I had been on flomax. He was extremly thorough! my appointment was sheduled for 1/2 an hour and he kept me for over an hour! The office staff was great, and his nurse is a sweetheart and said I reminded her of her daughter. They looked me in the eye when I spoke and rubbed me on the arm when I cryed-then cracked jokes to make me smile! They told me not to worry, since lots of women they see are on there last rope. I also have a whole new outlook on cystoscopys, if you can remember I kind of got a little ptsd from my one with the last uro, it wasn't pretty. I had a pelvic, rectal, catheter, and a office cysto! He THOUROGHLY numbed me up with lidocane and waited with me for 5 minutes just talking to me while it kicked in. He also gave me the choice to back out, if I thought it would be too much. I said "whatever it takes to help me go for it." The scope didn't hurt at all!!! No pain! I felt the pressure of it going in and out, but not even a pinch! He said my bladder looked ok I didnt burn at all the rest of the day, not even the first time I peed after the cath and cysto! He reviewed my records and saw the treatments I had tried and failed. Elmiron, antibiotics, antihistamines, antidepressents, IC diet, bladder training, bio feedback, detrol,vesacare, ditopan, and the list continues. The first thing he told me was that, beleive it or not, my biggest problem is nerve related and my pelvic floor! He said my pelvic floor was a mess and I had severe high tone pfd. He gave me a referral to a great womens clinic especially for pelvic floor physical therapy. Its run by all women, and the receptionist Betty, whom I sheduled with there is a doll and said she couldn't wait to meet me! He interviewed all the therapists there personally and said it was one of the best clinics in the country for what they do. He said that the physical therapy was a must since I simply will not get any better with my pelvic floor the way it is. Then he excused himself for a sec and grabbed the interstim itself a lead and a replica of the spine. He told me that my nerves were miss firing. He said the physical therapy will help my pelvic floor and pain, and this will help my bladder communicate with my brain better. I said ok lets do it! He said, "I won't schedule you right now, its not ethical. You must do the pt or I won't do it. I will see you in two weeks. Really think about this, and watch the video and read the brocures." So I have my first pt on April 10th which to tell you the truth i'm looking forward to the "me" time. I was hoping for any insight you guys may have to offer good and bad. I have scoured the internet and have done tons of research alreay and ordered an info packet from medtronic. All I want now are personal experiences. I want to do it since bascially everything else has failed but I want to be realistic about the dangers associated as well. I read all of Cindy's info too including her Sticky. Advice would be much appreciated! Thanks again for the continued support, I'm long winded today sorry!

    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

  • #2
    I would definitely try physical therapy first.

    I can't understand a physician laughing about trying flomax --- it actually works very well for some with IC. I haven't tried that particular one, but I did very well when I was on a similar medication, which I had to stop due to another problem.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, 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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Well, it sounds like your doctor is a good one! I am glad he is making you try PT first, since it is one thing you have not tried yet. You need to try absolutely everything out there before you go for the InterStim, because it's not a minor procedure.

      I know you've tried many things already, but definitely try the PT. My urologist says PT has worked so well for some of his patients that they did not want the InterStim anymore!

      Of course, there are those of us that PT doesn't work so well for, but it's worth the shot anyway. I went two separate times, once in TN and once here in NC -- both therapists were sweeties, but the therapy just didn't work long term for me, but it did help me learn some exercises to use at home to stretch out those muscles when I catch myself tensing them. So, even though it didn't work long term, I got a new tool for my pain toolkit

      As for InterStim, see how the PT works for a while and then start thinking about it.

      Do your research. Look at these boards and read both good and bad stories. Look at the Neurostimulation sections of the Patient Handbook; they are excellent. Check out the Medtronic website, and while you're there, order the information packet they offer. Medtronic also offers free conference calls periodically that involve doctors who do the InterStim and patients who've had it, so you can ask questions there too.

      Discuss it with any friends and family members you trust and see what their opinions are (but just consider them, don't base your decision wholly on what they say).

      Discuss it with your doctor too. Find out how many procedures he's done, how he does them (what kind of anesthesia, whether or not he inserts leads on both sides during the trial, what he does to prevent infection, which InterStim system he uses, etc), and why he's recommending this for you.

      Ultimately, listen to your own voice. Think hard, and do as much soul-searching as you can. Ask yourself if you really want to go through it, what it means to you, and whatever else you need to know to make your own decision. Your own voice will tell you what to do. I know mine gave me its final word when I first got a letter saying that my insurance would not pay for the surgery -- I was really upset, and I knew then I really wanted to do this. And, I knew my husband was in with me because he suggested taking money out of investments to pay for it ourselves. Ultimately, though, I got another letter a couple of days later saying they WOULD pay, because my doc had written a nasty letter to them, so I went for it!! However, this soul-searching process took several months for me -- but when I knew the answer, I scheduled it ASAP.

      Ultimately, you'll feel the decision -- you'll tell yourself what you want based on all the information you've taken in.

      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
        My first suggestion is to research, research and then research some more. I am one that has not had good luck. In fact if you look back at my post you can see my story. With my first one I had about 6 months of help. Then I had 2 car wrecks the same day and from there every thing went down hill. The wreck moved the leads and I also think they damage the nerve where the leads go, During this time I lost my health insurance, so therefore the doctor who did mine refuse to help me and told me my symptoms where normal. I was having major left toe curling and shocking in my leg to the point I could not move my leg and had to turn the unit off just to move it. It took me 8 months to find another doctor to help me and I got a revision and a new unit. Well this unit only 2 of the 4 leads worked right an would not help my symptoms. I just had it removed a week ago. My story is a lot longer in detail just dont want to go into it right now.

        That being said I would never tell you not to get it. Even after all I went through, because for some it is a life saver. I highly recommend looking at long term benefit. This procedure is not cheap and should something go wrong and you lost you medical insuance could you pay for another one. Also check into your doctor sucess rate and failure rate (find out why they had failure). Have your doctor sign a written constent should you want the unit removed he will do so.

        Lastly this is not for pain, but for urgency and freq and honestly it is not FDA approved for IC. But for urinary retention and so is FDA approved. Check out the FDA's MAUDE watch site and look for info turned in on InterStim that have gone bad. And try all other methods for treating IC before opting for this. This is not something you can try and just discontinue should it not work.

        The ultimate choice is yours and only yours and you know what will work best for your body.
        God grant me the serinity to withstand the days ahead!!!

        My myspace link...
        www.myspace.com/patricia_luvs_matt


        Patricia

        In Memory of My Father (Lawerence) 1/25/2007

        Procedures:
        Interstim Sept 2001
        1st InterStim Removal May 2005
        2nd Interstim Implanted May 2005
        2nd InterStim Removed March 2007
        Hysterectomy 1999
        Tubes Tied 1997
        C-Section 1996


        Me and my kids


        Taylor (my daughter) Me and my daughter My son Cody and Taylor

        Comment


        • #5
          He told me that my nerves were miss firing. He said the physical therapy will help my pelvic floor and pain, and this will help my bladder communicate with my brain better.
          I am actually confused by this statement.. You didn't mention he said anything about urgency, frequency and rentention. The interstim leads are not attached to the nerves "if " he said they were, I say this because of what he said above. I have never heard anyone say that there doctors told them that there nerves were misfiring, and it would help your bladder communicate with your brain. Please don't think I am dogging your doctor, I am just confused and do not want you misinformed, as others have been.

          Go to the medtronics site www.interstim.com, get all the free info and read it. also check out the maude sight. make sure you are going into this knowing the good and the bad, the benifits and the cons.

          keep us posted on how things are going.. glad you liked your doctor and the staff that is so important.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            He sure sounds like a sweetheart. Very compassionate.

            I hope the PT helps you - I wonder if 2 weeks will be long enough to really see results before making a decision about the Interstim?
            Kim

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

            *****************************

            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

            Comment


            • #7
              I have decided to go for it. I have done research, read all the posts here, ordered an info packet, called in on a teleconfrence, understand the risk and the expense, watched the movie. I have decided to do this because I owe it to myself to get the best treatment available. I have been suffering for 6 years, so this was an easy choice for me. I have been thinking about it for some time, and as the meds kept failing, diet hasn't worked, instill, cysto and biofeedback was usless this was a good try. I already talked to my family, my grandfather did research and he called becuase he thought I had incontinence and felt bad. hehe Jake knows he will have lots of responsibilities during the recovery period.I have made up my mind and I have been praying that this is the right choice. My gut tells me yes, and I know I will regret not doing it. Thanks for listening and looking out for my best intrest.

              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


              • #8
                Oh to clarify Cindy,

                I have severe urgency-frequency. He said that my bladder was neurogenic?

                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


                • #9
                  Like I said in chats, I am here if you need me. Just let me know

                  Comment


                  • #10
                    Me too -- I'm here if you want to ask questions.
                    ****
                    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


                    • #11
                      Hi Erika;

                      I am here to if you would like to PM me about it !!
                      I have had my InterStim now over eight years and I am one that is living a
                      very successful life with the InterStim..

                      So any questions I would be very glad to answer them ..
                      Thinking positive has got me through to another day!!

                      Comment


                      • #12
                        ok kewl.. you know my brain has been in a fog lately.. so sorry.. ((hugs)) your right what do you have to lose? you have the trial it works great or it don't.. I am willing to bet you will find relief. My trial is the 2nd of may and removal/implant is the 16th. I am so glad you did a lot of research, that makes me feel better. I am here for ya if you need me.
                        'The will of God will never take you where the Grace of God will not protect you.'

                        Comment


                        • #13
                          Thank you so much for the support and the facts. I really appreciate all the honesty, and that you are looking out for my best intrest. Thank you all so much for offering your time if I have questions. I apreciate the support more than I can express in words...

                          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


                          • #14
                            thats why we are here.. sit down and make a list of questions, we will gladly answer them for you.. even if we already have and you forgot.. lol oh thats not you, thats me on the forgetting part
                            you can never ask too many questions.
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              HEHEHE

                              Thanks Cindy, you can always make me chuckle...

                              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

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