Cauda Equina Syndrome

[CGTMHI]

Am desperately searching for any information concerning FES nerve stimulant impulse research, who and where. I am an active male in early 40's presenting with Cauda Equina syndrome subsequent to 4 story fall and L1 burst fracture. This manifests as complete saddle anaethesia, rectal incontinence but most frustratingly, an areflexive bladder requiring frequent intermittant self-cathing for the last 2 1/2 years. I have already sustained a urologic E-Coli infection and due to further risk of infection, I cannot cath in public restrooms, therefore cannot leave my house for more than 4-5 hours. I consider myself very lucky I can even walk, but I need my life back! There is very little information available on Cauda Equina yet I undertand that FES is a receiver/transmitter implant technology that could trigger the bladder sphincter to allow voiding. I would be most grateful for any information or any further avenues that I could pursue regarding nerve stimulator implants.

Respectfully
Nigel.

[CCF Neuro[P] MD, RPS]

Dear Nigel:

I am sorry of your condition but you are fortunate that your not in a wheelchair.  I wish I knew of a particular person that you help in your quest.  There are a few major spinal cord injury centers, Miami, San Diego, Los Angeles, but I am not aware of FDA approval of the device.  Sorry, I am not much help.  I would contact the Miami center as they would know more on the current status of your need.

Sincerely,

CCF Neuro MD

[Vickie Wolfe]

Hi Nigel,

I am so sorry to hear that you too have cauda equina syndrome.  I have a support group for people with CES.  Our group is now a year old.  We have 80 members, both men and women, from all over the world.

Many of our members have to self-cath., although I personally do not. We have been having a discussion about cathing in public restrooms.  Most of our members have learned how to do that.  Apparently most hospitals teach you to cath laying down, which most of our members think is the hard way of doing it.  We have one member who golfs and actually goes behind a bush and takes out his little bag with sterile equiment and caths. right there.  We have also discussed the infections that everyone who does cath. is prone to.

Nigel you can write to me at ***@****

I will be happy to help you in any way and also tell you more about our group.  This is such a rare condition that we end up with no one to talk to about what is happening to our bodies.  Just having others to talk to that experience the same problems is helpful.

Warmly,

Vickie

[Bruce]

ihave partial cauda equina syndrome, and i am getting sad that i cannot get info as to what it realy is and treatment options, and how this affects me.

[safya]

A related discussion, cauda equina syndrome was started.