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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. I have had untold trouble with repeated UTI's, visceral pelvic pain and severe 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.
Please could you share your experience and expertise as the daily badder pain is unberable and affecting my quality of life. Look forward to your feedback. Thank you.
 
  • Posted Thu 31 Aug 2017 05:55 PM EDT
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i tried to ask a few Q's but appered to be having issues
1. what causes damage to the silia(?)
2.for the Noro user, i find prune juice 1 hour before program helpful
3. i have in the last year started having AD when sleeping on my left side , im now wonderig if this could be gas
 
  • Posted Wed 30 Aug 2017 04:17 PM EDT
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Nurse Linda,  My husband Paul has paraparesis and does not have the use of his legs at all.  The spasticity is unreal he takes baclofin regularly but it does not control it.  His neurologist had suggested a baclofin pump but we rejected it due to the fact that we are 50 miles from the neurogist's office and his care of the pump.   The pain he experiences from the spasims breaks my heart but I can do nothing.  Would what you describ in your article be of benefit to him?  Is this something we should discuss with his neuro?
  • Posted Tue 04 Jul 2017 12:26 PM EDT
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Nurse Linda,
im a 58 year old female in excruciating pain. I was in a car accident in 1979 and severed my spinal cord at T11/T12. I've always had pain but in the early years it was not daily just every once in awhile and I could sleep without pain as the years have progressed I'm experiencing much more pain and it's constant. It's hard to sleep anymore as my legs are so painful even though I can't feel them. In 2016 I went to many doctors to try and determine what was causing all of this pain will little results. We don't have any physiatrists in Sarasota FL so I haven't seen one in 20 years. I was pretty healthy otherwise until about 6 years ago when the pain increased and my bodies changing. I have Harrington rods in my back and have scoliosis at L1 & L2 along with spinal stenosis. I also have tendenopathy in both shoulders from over use with my manual chair. Do you know of any physiatrists in Florida or better yet where are the best ones located? Also can you recommend the best manual chairs ( I use a quickie) and I'm going to need the power assist wheels. I just need help. I've had no one to talk with in so long about my condition that I've had to wing it. Thank you for any info. Edye
  • Posted Tue 21 Mar 2017 12:38 AM EDT
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Hi Linda I am Atif I want I have a gunshot injury my C7 and T1 vertebrae was effected,Bullet does not hit the cord but the bone fragments compressed and damaged the spinal cord, Bullets are still in my body and it been eight years (I don't have any Spinal surgery) .I have little improvement but almost no sense and no motor function below the injury, I want to know what will happen when pieces of bones left in the cord ,Do they desolve naturally or what happen when nerves are compressed for long time and what happen to the cord which was burnt due to bullet heat .Can it heal naturally or do you know any therapy or medicine which will help me.
  • Posted Thu 16 Feb 2017 11:02 PM EST
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Hi nurse Linda, I am a 61 year old paraplegic and have recently been diagnosed with IBS 10 days ago and am in pain all the time, is there anything I can do to improve my bowel program ?
  • Posted Fri 03 Feb 2017 09:15 AM EST
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Hello,
My 20 year old daughter had her SCI back in June of 2016. Upon first diagnosis at the Shepherd Center in Atlanta she has was a T9 Asia C. She recently returned for a research study and she is now a L2 Asia D. She can take a few step with arm crutches and she continues to work hard on her rehab and recovery. Is it impractical to think that she could walk on her own someday? For how long can we expect to see continued improvement in her situation?
  • Posted Mon 23 Jan 2017 07:13 PM EST
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good to see
  • Posted Wed 19 Oct 2016 08:26 AM EDT
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Hello so recently I had an ASIA Exam done on me and I was diagnosed as having a C4 Neurological Level Injury. However, I believe that on my previous ASIA Exams I’ve been diagnosed as having a C5 Neurological Level Injury. My level injury is C6/C7 complete tetraplegia. I looked around the internet to try and find the key sensory points and I was able to locate all of them except the C5 key sensory point. I’m struggling to pin point the exact location on my arm I used this website http://asia-spinalinjury.org/wp-content/uploads/2016/02/Key_Sensory_Points.pdf to locate the key sensory points. So I was wondering if anyone could tell me the exact location of were the C5 key sensory point is like maybe draw a circle on your arm? I would really appreciate it.
My ASIA Exam Score Sensory Only
Sensory/Right Side
C2: LT= 2 PP= 2
C3: LT=2 PP= 2
C4: LT= 2 PP= 2
C5: LT= 2 PP= 1
C6: LT= 1 PP=0
Sensory/Left Side
C2: LT= 2 PP= 2
C3: LT=2 PP= 2
C4: LT= 2 PP= 2
C5: LT= 2 PP= 0
C6: LT= 2 PP=0
  • Posted Wed 17 Aug 2016 08:45 PM EDT
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Hi Linda, my partner has 3 breaks in her C-2, sustained at birth when the forced adoptions (Catholic Church) took her forcibly with forceps from her birth mother. She is NOT paralysed but she has many neurological issues and is only coping with the intense neuralgia due to an electro-stimulator implant that blocks some of the signals. I thought the REEVE Foundation would like to know about a person who is a walking medical miracle - we don't know of anyone else alive with broken C-2 and also to see whether there is some advice support on the many autonomic issues she has; cannot regulate body temperature well, evacuation difficult, digestion problems, visual disturbance etc. Thank you so much. Regards Georgia Darcy.
  • Posted Thu 30 Jun 2016 11:41 PM EDT
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