Announcement

Collapse
No announcement yet.

I wonder where I go from here

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    I wonder where I go from here

    I was told last Nov (2013) that I must have a suprapubic,(continous infections) I couldnt accept this, even thou I had a Foley for roughly 3 years, so I asked my Dr. would it be possible to go back to self cathing, he agreed but told me that I would maybe be able to void on my own for just a little time then I would go back to having too self cath for each void. Plus my bladder wouldnt like the idea of going back to work, and would cause more incontinence and bla bla bla.

    So they Foley was removed the end of the month(Nov 2013), and my ball and chain was removed, kinda. But also feel the Foley helped my bladder neck as it was very tight before.(bladder neck and bladder didnt communicate very well) Yes, it was like he said angry bladder, and back to self cathing. And much more incontinent, so he said you havent had a cystoscopy in 2 years lets take a look.I asked him as I have never had Urodynamic's, if that would tell you anything, he said they will, but rarely orders them and said we should start with the cystoscopy. The cystoscopy found of course the flaccid bladder, but also a incompetent sphincter. I have notice I dont have to cath as often, but I'm virtually incontinent. He said to start Kegal's which I did, but havent seen any results yet. He also said we might need to start a electronic pulse thing to help with the issue. I'm nonSCI.

    Will meet with him again soon for a followup and wondering my options before I talk with him. Can incompetent sphincter be longterm? I know the flaccid bladder is.

    Sincerely,
    Danny

    #2
    Flaccid bladder can really best be determined with urodynamics as in looking at electrical activity and a true flaccid bladder would have no contraction, or very weak if underactive. And then you wouldn't void unless it was an overflow incontinent void!
    He probably doesn't have the capability to do UDS in his office. So unless you were officially diagnosed with a flaccid or neurogenic underactive bladder- the new term- which you of course should still have I am assuming that is why he said he saw it on cystoscopy. But how are you voiding unless overflow incontinence if you have a Flaccid bladder which means you have no contraction. Also if having a bladder contraction and truly voiding, you really need to know the voiding pressures and if safe for your kidneys to void. So I would see how it goes but I highly recommend UDs if you will be voiding/cathing.
    Anticholinergics or Myrbetriq to relax bladder. If need more- Botox to bladder.
    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      That is interesting to know,as mentioned, I have never had a UDS,he does have the capability as I point blank asked him,saying shouldnt I have this done, and he quickly said as mentioned above,they do them here,but not as often as the way he said it,I use to order them all the time but not as often now.And he wanted me to have a cystoscopy first. What I do not understand, is can I have a Flaccid or Decompensated bladder as he likes to call my bladder, with the incompetent sphincter? I was on 50mg of Myrbetriq, but he gave me the ok to get off of it as I was dizzy, sinus issues monthly, always constipated. So currently I'm not taking anything. He did say when you come for your followup talk, I will be starting you on Anticholinergics.

      So to sum this up, I should ask him for the Urodynamic Study, and yes I'm voiding/cathing. I'm wondering if I should go back to the Foley.

      Again,thank you for your help

      Danny








      Originally posted by SCI-Nurse View Post
      Flaccid bladder can really best be determined with urodynamics as in looking at electrical activity and a true flaccid bladder would have no contraction, or very weak if underactive. And then you wouldn't void unless it was an overflow incontinent void!
      He probably doesn't have the capability to do UDS in his office. So unless you were officially diagnosed with a flaccid or neurogenic underactive bladder- the new term- which you of course should still have I am assuming that is why he said he saw it on cystoscopy. But how are you voiding unless overflow incontinence if you have a Flaccid bladder which means you have no contraction. Also if having a bladder contraction and truly voiding, you really need to know the voiding pressures and if safe for your kidneys to void. So I would see how it goes but I highly recommend UDs if you will be voiding/cathing.
      Anticholinergics or Myrbetriq to relax bladder. If need more- Botox to bladder.
      CWO

      Comment


        #4
        Yes, I do agree, many times even after I cath my bladder feels like it has a headache. Yes, also agree this is a longterm issue, and even with corrections I will always have some issues
        Thank you for the information, I have read, and will reread

        Sincerely,
        Danny


        Originally posted by smashms
        Yes there is some reason why this is happening wether it be neurological or not. I would try to get to the bottom of why this happened. I used the interstim device for 2 years unsuccessfully, but i also have a sci they are not recommended for neurological issues. The likely hood that this will be short term without treatment is almost non existent. Even with treatment there will almost always be some issues.

        http://kidney.niddk.nih.gov/kudiseases/pubs/uimen/

        Comment


          #5
          Can anyone tell me the medical term for incompetent urinary sphincter? Everytime I look it up even if I insert in human, dog stuff comes up. Would like to read up on this so when I have my appointment next week, I can talk about it with some ease

          Comment


            #6
            bladder sphincter dyssynergia http://en.wikipedia.org/wiki/Bladder...er_dyssynergia

            Is this what you are looking for?

            pbr
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment


              #7
              Originally posted by SCI-Nurse View Post
              bladder sphincter dyssynergia http://en.wikipedia.org/wiki/Bladder...er_dyssynergia

              Is this what you are looking for?

              pbr
              I guess, as I don't know what the term incompetent sphincter means, and just wanted to read up some before meeting with Dr. next week

              Comment


                #8
                why are you adamantly against a sp? it would close easily if it turns out it doesn't work for you.

                I have a couple friends with the same issues, due to MS.
                they are pretty happy with the convenience of the sp, once they got the leaking to stop.

                im wondering how botox would help if its flaccid bladder.

                my UD tests show no contraction or spasms, however I had very strong bladder spasms when a latex foley was put in by mistake and I had a reaction.

                The Urodynamics test is sometimes a quick, fairly simple tests, not sure why your uro wouldn't do them every couple years.

                I thought Botox was for spastic bladder not flaccid bladder.

                Comment


                  #9
                  Thanks Jody for replying,

                  First I dont have MS, and would like to find out whats actually causing some of this. I suppose in time I will need the SP, but would like to fight it as long as I can, right now the Drs are happy with me self cathing, and I can live with the rest, just would like to know what it all means

                  I couldnt agree with you more Jody and SCI Nurses, UD is what I need, and I will present that to him, he didnt rule out before the Cystoscopy,so its time.

                  I just really want to be ready for my appointment, I hopefully will have his attention for 30 minutes

                  He has never recommended Botox for me, but the point here was well taken.

                  I have had this leaking for sometime, and it was like he didnt beleive me. Maybe this time we can find out some things

                  Comment


                    #10
                    An incompetent external urinary sphincter is one that is not closing to keep urine in. It is often referred to as a flaccid sphincter as well. A spastic sphincter, such as you have in DSD, is one that doesn't open when the bladder contracts, this this is sort of the opposite of DSD. An incompetent sphincter will allow urine to leak easily, even if your bladder does not contract (is flaccid).

                    Do you also have a flaccid bladder??

                    If you have voluntary control over your anal and external urinary sphincter muscle (primarily your pubococcyxgeal muscle) you can do Kegal exercises, but if your paralysis includes those muscle, it is unlikely unless you are incomplete. The same goes for sphincter biofeedback, which is often possible to use to retrain the sphincter in men with prostate surgery, but less often usable in SCI.

                    Treatment for an incompetent sphincter could include a bladder sling procedure and/or "bulking" procedure where they thicken the tissue in the urethra at the level of the sphincter, essentially giving you a stricture. This is done with injection of materials into the urethral wall through a cystoscope. Collegen used to be used, but is rarely used now day in favor of less allergy troublesome materials. An implanted artificial sphincter is also an option for some (must also have a flaccid bladder for this). This would usually then need to be combined with intermittent cath to empty your bladder.

                    Do you have a SCI? Is this urologist an expert in neurologic urology? You should probably have complete urodynamics, which would include a CMG (cystometrogram) and sphincter EMG, and ideally done as a video fluoroscopic study to visualize your bladder during the study.

                    (KLD)
                    Last edited by SCI-Nurse; 13 Mar 2014, 7:38 PM.
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                      #11
                      I assumed from the cystoscopy, that it was my inner sphincter, but maybe that cant be, I just don't know enough about this.

                      He told me to my face I had a Decompensated bladder, but wrote in his Dr.'s notes that I had a Flaccid bladder, so I asked him, and he said well you have a Decompensated bladder, and that the software program wouldn't allow him to use the term Decompensated? But its in all my records that I have a Flaccid bladder. Again, I have never had UD.

                      No, I'm not SCI. I do have lower back issue(Degeneration of the lower lumbar). No, I just assume he is not a expert in neurologic urology. Were I live there is limited people in this field.(Urology)

                      I realize I'm taking time away from others so I will not post more questions, but I get more information from all of you then I can find. I humbly thank you all

                      Sincerely,
                      Danny
                      Last edited by lynnsgarden; 14 Mar 2014, 9:17 AM. Reason: sp

                      Comment


                        #12
                        Thought maybe someone might gain something from my urology visit.
                        We had a 25 min discussion, and he concludes my bladder is leathery, and wants to do a hydrodistention of the bladder, and botox, he didn't feel I was neurogenic, or with kidney issues. I asked about doing UD, and he said its possible the insurance company will make him do that also, he didn't feel the UD was necessary.

                        I thought later if he feels I have IC.
                        I also wonder what if the above even thou he said it would help me, if it will.
                        Sincerely,
                        Danny

                        Comment


                          #13
                          I would recommend that you get a second opinion from a urologist who is an expert in neurologic urology. That does not appear to be the case for your current urologist, esp. if he is so reluctant to do urodynamics, which is done specifically to determine how much neurologic impairment there is involved in bladder issues

                          Attempting to stretch out a small contracted bladder by over-filling it with water is an old technique that rarely does anything for this problem in those with a neurogenic bladder, and puts you at significant risk for urine reflux to the kidneys and even bladder rupture.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                            #14
                            Originally posted by SCI-Nurse View Post
                            I would recommend that you get a second opinion from a urologist who is an expert in neurologic urology. That does not appear to be the case for your current urologist, esp. if he is so reluctant to do urodynamics, which is done specifically to determine how much neurologic impairment there is involved in bladder issues

                            Attempting to stretch out a small contracted bladder by over-filling it with water is an old technique that rarely does anything for this problem in those with a neurogenic bladder, and puts you at significant risk for urine reflux to the kidneys and even bladder rupture.

                            (KLD)
                            Thank you so much for this information, for some reason I didn't feel this procedure was right either. And I agree with you on the UD

                            Sincerely,
                            Danny
                            Last edited by lynnsgarden; 20 Mar 2014, 10:40 PM. Reason: typo

                            Comment


                              #15
                              I think your questions were fine.
                              Im not getting how Botox would help a flaccid bladder.
                              I thought that Botox was to deaden a spastic bladder as it does for spastic muscles.

                              if your bladder is already flaccid, I don't understand what botox would do for you, so I hope you do get a second opinion like KLD suggests.

                              im just a urology patient, so no medical knowledge except from my own experiences.
                              the filling up of the bladder made me really sick, It gave me an autonomic response. they do that with a urodynamics test too, but not so full as that inflation test.

                              Im noticing something with Dr's now that wasn't so prevalent in the past.
                              they seem to want to prescribe something that will keep you going back for regular treatment, even if it won't really do anything for you. Im wondering that about going for Botox, if your bladder is flaccid and not spastic.

                              Comment

                              Working...
                              X