Inspired Spinal Cord Injury Support Forum

DJ
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How rare is Cauda Equina Syndrome? Aug 14, 2014 5:57:51 GMT -8

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Post by DJ on Aug 14, 2014 5:57:51 GMT -8

Aug 14, 2014 5:45:50 GMT -8 kilg0retr0ut said:

Maybe we should. We'd need help. Maybe a chat with Emmat would be helpful.
Maybe DJ would help on the tech side, or connect us with someone who could?
I think the U.K. is way ahead of us on CES awareness. I think it's important that we follow their lead.

That's a great idea kilg0retr0ut, I'd do it for sure!

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Aug 14, 2014 6:02:52 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Aug 14, 2014 6:02:52 GMT -8 Thanks DJ, I was hoping you'd help.
	DJ likes this L4/5 CES

DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Aug 14, 2014 7:22:12 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Aug 14, 2014 7:22:12 GMT -8 Aug 14, 2014 6:02:52 GMT -8 kilg0retr0ut said: Thanks DJ, I was hoping you'd help. No problem. emmat, what do you think?
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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Aug 14, 2014 9:38:28 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Aug 14, 2014 9:38:28 GMT -8 I'd like to hear if Ladylimpsalot is game. I have no idea what would be involved, so I need look for some answers. If anyone else is interested in this idea or something similar please join in or PM me. Mark
	L4/5 CES

ladylimpsalot Advanced Member Posts: 587 Post Likes Received: 293 Date Joined: August 2013 Injury: L4-5 Date Injured: Surgery- Nov 9, 2011 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Aug 14, 2014 9:51:01 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by ladylimpsalot on Aug 14, 2014 9:51:01 GMT -8 Aug 13, 2014 22:32:12 GMT -8 Butiki said: All I know is that it's not rare enough. You're exactly right! I sure wish that I had never heard of it!

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How rare is Cauda Equina Syndrome? Aug 14, 2014 9:52:03 GMT -8

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Post by ladylimpsalot on Aug 14, 2014 9:52:03 GMT -8

Aug 14, 2014 9:38:28 GMT -8 kilg0retr0ut said:

I'd like to hear if Ladylimpsalot is game. I have no idea what would be involved, so I need look for some answers.
If anyone else is interested in this idea or something similar please join in or PM me. Mark

I really do not know how to do it, what it entails either. Would love to help out.

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Aug 15, 2014 5:52:32 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Aug 15, 2014 5:52:32 GMT -8 I been looking, seems like 4yrs later there is tons of CES info. Although I couldn't find truwrecks you tube video, where'd it go TR. The girl who says she's had CES twice really doe's more damage than good.
	L4/5 CES

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How rare is Cauda Equina Syndrome? Aug 24, 2014 14:13:23 GMT -8

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Post by ladylimpsalot on Aug 24, 2014 14:13:23 GMT -8

Aug 15, 2014 5:52:32 GMT -8 kilg0retr0ut said:

I been looking, seems like 4yrs later there is tons of CES info. Although I couldn't find truwrecks you tube video, where'd it go TR.
The girl who says she's had CES twice really doe's more damage than good.

CES supposedly has a 50% cure rate, within 2 years I think. So if it goes away the first time, it is possible to get it more than once. I sure wish that I could say that I had CES once!

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izabella
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How rare is Cauda Equina Syndrome? Sept 6, 2014 23:27:36 GMT -8

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Post by izabella on Sept 6, 2014 23:27:36 GMT -8

Im working my way through all the information here and i am amazed that no one tell us all this information.
I never get straight answers when i ask and ive had no clue to what happened to my spine with this CES.

I am grateful i came across this place!

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ladylimpsalot Advanced Member Posts: 587 Post Likes Received: 293 Date Joined: August 2013 Injury: L4-5 Date Injured: Surgery- Nov 9, 2011 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? Sept 9, 2014 17:05:39 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by ladylimpsalot on Sept 9, 2014 17:05:39 GMT -8 CES happens when the spinal nerves are damaged, generally by compression for over 48 hours or so. Mine happened at L4-5. The longer they are compressed, or squished, the more damage is done.

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How rare is Cauda Equina Syndrome? May 18, 2015 1:44:08 GMT -8

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Post by Lαrα on May 18, 2015 1:44:08 GMT -8

Aug 24, 2014 14:13:23 GMT -8 ladylimpsalot said:

Aug 15, 2014 5:52:32 GMT -8 kilg0retr0ut said:

I been looking, seems like 4yrs later there is tons of CES info. Although I couldn't find truwrecks you tube video, where'd it go TR.
The girl who says she's had CES twice really doe's more damage than good.

CES supposedly has a 50% cure rate, within 2 years I think. So if it goes away the first time, it is possible to get it more than once. I sure wish that I could say that I had CES once!

I really don't personally agree with this statement.

The important factor for recovery ( I wont say 'Cure') is timing of surgery to remove the cause of compression. For Cauda Equina Syndrome there is a window of opportunity for recovery and its 48 hours, simply.

Once the surgery has taken place then yes regeneration can occur up to 2 years and sometimes longer even but I don't want to give false hope to people with CES who think that they may still be 'cured' within a 2 year waiting period.

Here is a forum post on recovery and surgery The importance of timing and surgery in CES

ladylimpsalot, when giving statistics like this, we ideally need to back them up with a credible source..please.

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? May 18, 2015 4:31:02 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on May 18, 2015 4:31:02 GMT -8 Ladylimpsalot hasn't posted for eons. Thank for the fix though, it could be misleading.
	L4/5 CES

kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? May 18, 2015 4:55:12 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on May 18, 2015 4:55:12 GMT -8 Have you found any good numbers Lara? I heard 1-33,000, 1-300,000, 1-in a million. I've still don't know how rare CES is. Lαrα,
	L4/5 CES

Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	How rare is Cauda Equina Syndrome? May 18, 2015 5:28:46 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on May 18, 2015 5:28:46 GMT -8 I thought I had posted them sometime kilg0retr0ut but il take a look around and see what is the most recent
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bensan
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How rare is Cauda Equina Syndrome? May 26, 2015 3:38:33 GMT -8

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Post by bensan on May 26, 2015 3:38:33 GMT -8

Good morning folks. Sorry I have not been posting for several months but we have been busy. I had my boat shipped to Florida and readied for use in the Gulf of Mexico. I found a marina that is not totally accessible but they sure make it easy for me. The staff is very helpful and once I am on board I can move about holding on to handholds. Thankfully I do not need a wheelchair all the time I can use my crutches. My wife says she hasn't seen me smile so much since I have been hurt

Now that we are back in Pennsylvania I should have more time to be active in the group.

I'll try to get a picture posted in the soon

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How rare is Cauda Equina Syndrome?

Post by DJ on Aug 14, 2014 5:57:51 GMT -8

Post by kilg0retr0ut on Aug 14, 2014 6:02:52 GMT -8

Post by DJ on Aug 14, 2014 7:22:12 GMT -8

Post by kilg0retr0ut on Aug 14, 2014 9:38:28 GMT -8

Post by ladylimpsalot on Aug 14, 2014 9:51:01 GMT -8

Post by ladylimpsalot on Aug 14, 2014 9:52:03 GMT -8

Post by kilg0retr0ut on Aug 15, 2014 5:52:32 GMT -8

Post by ladylimpsalot on Aug 24, 2014 14:13:23 GMT -8

Post by izabella on Sept 6, 2014 23:27:36 GMT -8

Post by ladylimpsalot on Sept 9, 2014 17:05:39 GMT -8

Post by Lαrα on May 18, 2015 1:44:08 GMT -8

Post by kilg0retr0ut on May 18, 2015 4:31:02 GMT -8

Post by kilg0retr0ut on May 18, 2015 4:55:12 GMT -8

Post by Lαrα on May 18, 2015 5:28:46 GMT -8

Post by bensan on May 26, 2015 3:38:33 GMT -8

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