Results 1 to 3 of 3

Thread: Severe spasms and UTIs for a male quadriplegic C5/C6 complete...

  1. #1

    Severe spasms and UTIs for a male quadriplegic C5/C6 complete...

    Hello everyone,

    I am a 28 year old male quadriplegic complete C5/C6 going on 15 years post injury. I have been dealing with just two issues; severe spasms and recurring UTIs.

    I currently get help catheterizing with closed sterile cath and bag kits(sterile gloves, iodine, incl.) every 4-6hours. I cannot cath myself.

    My current daily medication is baclofen 40mg/4x, tizanidine 4mg/4x, gabapentin 300mg/4x, and oxybutinin 20mg/2x.

    I also have a doctor's recommendation for use of edible THC/CBD because the spasms have been so severe I can barely make it to my next pill dosage.

    For starters, I have been on here in the past seeking help with my UTIs and have finally got into Arrowhead and Loma Linda Urology and I am about to start a culture specific antibiotic and then do the test on my bladder dynamics and a kidney ultrasound.

    The urologist is recommending I consider the super pubic (SP) catheter being that I rely on someone to catheterize me 24/7. Plus, at times of urgency when I do have to go it is impossible to get the catheter in and I retract inside out causing the tube to become exposed therefore causing another infection. I try to catheterize before I have to urinate but in the middle of the night it happens when I least expect it.

    So I know either way I go whether intermittent or SP it will be a fight to the end to not get UTIs. I just wish we had specific solutions but I guess it is trial and error until I figure out how to remain bug free?

    I know I could be happier and more independent with a SP because I could drink as much water as my body needs without needing to frequently cath. But I would love to get as much feedback as I can from people that actually have it or experienced my situation. I don't want to make any decision until I feel 100% confident in my decision. So if you can please share your experiences with me.

    I know that everyone is different and some cases may not work for others but I am ready to try everything because urologists don't seem to have any answers besides good luck be sterile. I have heard many people go many years without a UTI using a Microcyn wash and many others say D-Mannose supplements alone. Let me know what you think works best.

    As far as my spasms go I think these are a result of many years of not standing, stretching, and range of motion. My legs constantly stay bent in a sitting position all day and bent in the fetal position sleeping all night. Any movement of my legs cause me to severely spasm. My feet are flying out of shoes all day and I am running in the middle of the night.

    I have been in physical therapy 2 days a week paid by insurance and 1 day a week at Project Walk paid out of pocket. I stretch every morning and every night even on days of therapy and they still haven't gone down. I am getting ready to hire someone in to give me an hour a day of more stretching and range of motion similar to in home therapy. Also, the standing glider I use at Project Walk reduces my spasms with consistent use.

    I feel that with the right in home routine and a standing glider I could combat these spasms full force and as well maintain them. The standing glider is about $5000+ does anyone know if an insurance would cover one and what insurance? My family and I either want to pay for the insurance that will get what I need or am I better off starting a fundraiser for all the things I need?

    Spasms and UTIs I know are so common with this disability and I wish they had a cure all but I hope to at least get a good idea at what I need to do the rest of my life to keep these issues at bay.

    All your help and guidance will be very much appreciated! Any questions about me please feel free to ask! Thank you all!

  2. #2
    Stretching and exercise do help with spasticity however some have spasticity that interferes with there lifestyle and recovery and can cause pain. And UTI's and pressure ulcer and any infection makes them worse. What medications are you on for the spasticity? Tizanidine? Baclofen? Bladder spasm medication?
    Even with SPtube you should be on low dose anticholinergic such as Oxybutybnin .

  3. #3
    I posted in another thread about how I had constant UTI's whilst ICF cathing and after having an SPC I haven't had one in 2 years. I wouldn't go back to the regime of controlling drinking, waking through the night to cath and cleanliness needed when you do. Spc seems to work well for me, I've had a couple of episodes of bypassing which stopped when my oxybutin was increased and getting the leg bag and pipe hidden can be a challenge if you wear shorts. You still need to find places to empty the leg bag but that is a lot easier than finding somewhere clean to cath. I wouldn't go back the SPC works well and reducing UTI's alone was worth it. I'm sure there must be some downsides I am not aware of and no doubt someone will be along to point them out shortly.

Similar Threads

  1. Replies: 8
    Last Post: 08-15-2015, 02:19 AM
  2. Replies: 0
    Last Post: 06-30-2015, 11:54 PM
  3. HELP! Severe leg spasms.....
    By CiscoNJenn in forum Care
    Replies: 9
    Last Post: 04-14-2011, 07:54 PM
  4. Severe Spasms
    By simba in forum Pain
    Replies: 2
    Last Post: 03-28-2004, 07:30 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts