Neurogenic bladder and pain — Reeve Connect
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Neurogenic bladder and pain

Dear Nurse Linda

Thank you very much for your great work you do.

I have been suffering for 20 years with bladder pain and I’m desperately still searching for a solution.

Would you kindly share your expertise and help?

Background brief:

I sustained a complete, C5/6 spinal cord injury in June 2000 following a motorbike accident.

I have a neurogenic bladder with an indwelling supra-pubic catheter since January 2003. I experience untold trouble with repeated UTI's, visceral pelvic pain and Automimic dysreflexia.

I have been seen by several Urologists and have had failed numerous interventions (including bladder botox, urethral stenting, cycled antibiotics, etc...) and short of a surgical diversion I feel I’m running out of options.

Re: Bowel management

I used to do manual procedures with caregivers, but it became so unbearable and too stressful. (did manuals for 12years)

I had an ileostomy bag operation on 19 November 2012.

The Ileostomy gave me back 3days a week. It has pros and cons as I often feel fatigued and dip with energy which never used to happen prior to having ileostomy bag.

I am desperate to find a solution and be free of pain in my bladder.

Look forward to hearing from you.

Best regards,

Anthony Kairuz

Web: www.anthonykairuz.com

Mobile: +27 (0)72 119 5575
Email: [email protected]

Comments

  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, Anthony, I am very sorry to hear about all of these issues. It makes things very difficult when you basic functions are not working smoothly. 
    I have to assume that you have had urodynamic testing with all of your urology trips. If not, that is a good place to start.
    Just knowing this little bit about you, I have to wonder if you have spasms in body, bladder and bowel. Treatment for spasms (this might have been tried with the botox) or bladder sphincter dyssynergia. I realize you have a suprapubic, but pressure could still in your bladder sphincter not coordinating with bladder contractions. You probably have had this study as well.
    So, that leaves us with the neuropathic pain and autonomic dysreflexia. It could be that instead of the bladder/bowel function leading to pain and dysreflexia that the pain and dysreflexia are giving you the bladder symptoms. There are findings of neuropathic pain and AD being closely related as they are both disruptions in  the autonomic nervous system.
    If you have not looked into this pathway, you might want to try some treatments for neuropathic pain and/or AD control. This might include medication or biofeedback or acupuncture. It might be wise to speak with a spinal cord injury specialist to start investigation of this route of the source of your discomforts as opposed to the urologist (although that was a logical place to start but since it is not panning out, this might be a good place to go next).
    I will be very interested to find out your thoughts and if you do go the alternative route how that works out. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • Anthony_2107145Anthony_2107145 Member Posts: 5
    First Comment
    Dear Nurse Linda

    Thank you for your refreshing reply in covering relevant areas.
    The bladder sphincter dyssynergia and pressure is an area I must revisit. 

    Re: Neuropathic pain and AD 
    Excellent point which I’d like to explore ans will keep in communication with you. 
    Do you know of a Spinal Cord Injury specialist in South Africa whom I could work with? Or preferably a Reeves SCI Specialist that I could setup an appointment with to get the ball rolling?

    Best regards. 
    Anthony Kairuz 

  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, Anthony, I don't know much about specialists in South Africa but I found a source that has a list of SCI centers in South Africa: https://www.sasca.org.za/
    As far as in the US, there are many excellent centers for SCI treatment. You would want a place with full services for urology, pain, AD and especially with an SCI specialist. Kessler Rehabiliation pops into my mind but there are many more. The Paralysis Resource Center at the Reeve Foundation has specialists who direct people to care. You can just click on their link to begin that discussion. This will give you a couple of places to start or in your case, to continue. You are persevering so you will find answers. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • Anthony_2107145Anthony_2107145 Member Posts: 5
    First Comment
    Dear Nurse Linda
    Complements of the season. May 2021 be blessed for you and your loved ones. 

    Re: Kessler Rehabilitation centre
    Yes. Agreed. I will reach out to them. 
    Noted on the Paralysis Resource Center at the Reeve Foundation. Will action immediately. 
    Thank you for your reply and sharing experience and insight. 

    If I wanted to setup a 30min Virtual call/appointment with you, could we please schedule or do this at your earliest convenience?

    Kind regards,
    Anthony Kairuz 

  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Hi, Anthony, I do online responses. But if you want to send a message privately, you can drop you message in my inbox at the top right side of the screen. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • Anthony_2107145Anthony_2107145 Member Posts: 5
    First Comment
    Dear Nurse Linda
    Thank you for your reply. 
    I have sent accordingly. 
    Appreciate it. 
    Anthony Kairuz 
  • Anthony_2107145Anthony_2107145 Member Posts: 5
    First Comment
    Dear Nurse Linda
    Not sure if I've done it correctly. Would you kindly confirm receipt to your inbox at your earliest convenience?
    Thank you,
    Anthony Kairuz 
  • AskNurseLindaAskNurseLinda Moderator, Information Specialist Posts: 143 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    I have not found it but I have that little envelop icon in the upper right corner just after the magnifying glass and bell. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

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