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    Urologist

    I had my first appointment with a Urologist at Salford Royal this morning about having a suprapubic catheter. She agreed but said that because I’ve had a couple of operations nearby that area I’d have to have open surgery and not keyhole. For that she said that I’d need a general anaesthetic rather than local as I’d expected. I asked about having a spinal anaesthetic as I’d had one before. She looked doubtful when she said to speak to the anaesthetist about that option. She stressed the risks associated with this procedure, more so with MND and specific risks associated to the fact that I’ve already had a bowel operation (nearly 3 years ago). But despite all of that I still want this. The delay will be long, definitely not this year. She has prioritised me and recorded that I’d come in at short notice, such as when there’s been a cancellation.

    Having this procedure would improve my quality of life greatly as well as be easier for both me now and Steve later when he’ll be doing more things for me. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Hope not too long to wait Lynne x

    Comment


      #3
      Thanks Gordon, fingers crossed. Lynne x
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        Well done for following through on the suprapubic catheter Lynne.

        Shows how good it was for you to start the process now, given the delay in having the procedure done.

        Keep us updated on the anaesthetic decision.

        Love Ellie xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Lynne K I think you're a force to be reckoned with✊...good to know you're making progress. Thanks for the update 😘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            Thanks Ellie and Linda. I certainly will keep you all posted. Love Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Best of everything. I look forward to having another catheter user on here 💗🤗😘😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Looks like there's a lot of long waits for procedures. Stephen quoted 30 weeks for peg replacement.

                good luck Lynne. Xx

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                  #9
                  My consultant mentioned this to me 2 weeks ago. I was uncertain but i would like to hear how it made a difference to people who have one. Is the bag unobtrusive when you go out? Perhaps i should start the process after hearing about waiting time.

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                    #10
                    I think a leg bag is better for a woman as a dress or skirt would hide it perfectly. Maybe I should get a kilt! 🤗😆😘😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Isn't yours a leg bag Matthew? xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Yes it is and I switch to an overnight bag. Important note get the ones you can empty and keep using not the one time use ones. I have various belts and bags but as I don't go out I keep it next to me to stop it falling off. I have had few accidents. 😆🤗😄🤣xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          Originally posted by matthew55 View Post
                          I have had few accidents.
                          Accidents come in all forms 😍😍

                          My shower chair was obviously put over the loo all wonky this this morning and, out of the corner of my eye, I noticed a pool forming on the floor - that'll teach them to take 5 seconds to check the chair 😏


                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            My usual trick is to forget to close the valve after emptying. 😄😆😍💗xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Lynne K

                              Hope you are well.

                              Dad (Alzheimers) had his hip replaced with a epidural and sedation
                              General Anaesthetic is not good for people with dementia

                              So if it can be used for a major hip op then it should be good for you (not medical advice)

                              He was up and discharged and down at the pub, 3 days from admission.

                              72 hours, nurses called him the fastest hip in the West of Scotland.

                              This was 10 years ago so not a new procedure

                              Since then lots of people living with dementia, have requested this instean of GA.

                              Good luck and stick to your wishes

                              Cheers

                              Donna


                              Carer for Husband, diagnosed MND (prob Fail Arm Syndrome) in July 2020

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