RSL with Cauda Equina Syndrome

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Cloud42
Posts: 2
Joined: Fri Jun 25, 2004 5:21 am
Location: Oklahoma City

RSL with Cauda Equina Syndrome

Post by Cloud42 »

I was diagnoised with CES last year , lack of reflex, numbness waist down - that comes and goes , loss of sensory in the saddle area and in right leg - as well as muscle tone. Birth defect related. I'm 42 now,and dealt with this all my life.

In the past 3-4 months, my legs jerk without my help , whether i'm sleeping, wake or walking . Drs all have said its part of the CES , but the jerks is RLS.
They're like their spasming i guess that's a good word for'em.

the muscles in my bottom of my foot will tighten - hurt - and that lasts several minutes. When its not doing that, then my legs will jerk ect.

Cloud

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

My sympathy!

Post by jumpyowl »

Welcome Cloud: This is quite a rare and pesky problem you have, especially when combined with RLS! You may be the only one reported (and possibly only reported here :wink: ) with combination of RLS.

The cauda equina (CE) is a collection of intradural nerve roots beginning at the end of the spinal cord. Cauda is Latin for tail, and equina is Latin for horse, ie, the "horse's tail. ... In the United States, CES is uncommon, both atraumatically and traumatically, accounting for approximately 1-3% of patients who undergo spinal surgery. CES has no predilection for any race or either sex. Traumatic CES is not age specific. Atraumatic CES primarily occurs in adults.


Having a unilateral sciatica makes you even a more rare case.
It can cause serious problems:

The CE is formed by nerve roots caudal to the level of spinal cord termination. CES has been defined as low back pain; unilateral or, more typically, bilateral sciatica; saddle sensory disturbances; bladder and bowel dysfunction; and variable lower extremity motor and sensory loss.


As you probably know the typical sign of RLS is paresthesia in the lower extremities. Since you CES is accompanied by loss of sensation in the legs I wonder whether you can have paresthesia (creepy, crawling sensations in the legs) in view of diminished sensitivity. One can certainly have sciatica as you do in the right leg (?).

What you definitely have is PLM (periodic leg movements) which often accompanies RLS. This can be determined objectively, while paresthesia is a subjective sensation to the patient.

Thank you for sharing your almost unique problem! It must be tough to cope with this affliction. :( I hope that you will keep in touch and share.

My motto: Only by compiling these mosaics of factoids together can we hope to have one day the full picture.
_____________________________________________________
The quotes are taken from the article: "Cauda Equina" by Emad Soliman, MD, MSc, Consulting Staff, Department of Neurology, St John's Riverside Hospital. It can be viewed at

http://www.emedicine.com/med/topic2904.htm
Jumpy Owl

Cloud42
Posts: 2
Joined: Fri Jun 25, 2004 5:21 am
Location: Oklahoma City

CES

Post by Cloud42 »

Yes , and for years it went un-named, even when I was born with the floppy doll syndrome, they never gave my parents any answers .

It hit the high point last June , i was fishing , had my then 17 yr old son with me and all I did was turn to get something out of my tackle and my back went kaput on me , well I figured 3 - 4 wks recoop... july 3rd, you touched me I screamed in pain , i moved - i screamed in pain , told my husband I wanted some answers now. Went to a spinalist - he ordered an MRI - right off he knew what it was , but didn't want to do the surgery needed. But he wasn't like real informative , so I wanted a 2nd opionion and got on at mercy with their neurologist . He confirmed the CES and due to a birth defect Surgery wasn't an option - he then put me with a surgeon neuro - who also confirmed it and again no was the answer to surgery - risks of being a paralagic coming out of surgery 80%-90% . He explained what CES was, what Some of the signs I'd see as it progress. I have bladder loss when I go numb from waist down so know all that . But he said each case is different ,and reason nothing was said previous , this is a new deal and they're still learning about it . My Regular dr , I'm his 3rd patient w/ CES. So he's been a major godsend,and helps me with pain meds - we are trying vioxx now along with my ultram and it helps but not fully but I try to get by with toleration - i dont' want my body to become immune to the meds.

Least I got answers and my neuros said that due to the severity of it - I'll be paralazied eventually - could be 2morrow ..could be 20 yrs down the road but it will happen. That part don't really bother me , I've lived my life, I've had my children and I'm still blessed . Its the Little weird quirks that occur as it progresses , esp the RLS.

I have Sensory in my Left leg - so yes I feel the crawling and weird little sensations and in spots on my right cheek - one i sit on ~L~
I also get burning crawling sensations too .

When I had my EMG - the dr put in 12 needles into my right leg - of those twelve (hubby counted ) I felt 2. I never felt the shocks and kept waiting for him to begin and he goes "Its been done" OH ? lol.

Neuro was testing reflexes - Have Zilch in Right leg , he stood in front of me and well.........my left still has it in the knee ~L~
Its loosing reflexes though , none in the ankle area.

Thank you for the welcome and I'll post often as pain allows.

Cloud

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Hello!

Post by jumpyowl »

I am stunned and speechless. Feel very humble, too!. You are a brave soul. :shock:

If anything we can do, we are here for you. Just let us know. Even if it is just venting...
Jumpy Owl

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Welcome!!

Post by jan3213 »

I'm Jan. Welcome!

Like Jumpy said, you make me feel so humble. You are so brave and such an inspiration to all of us!! Please know that we are ALL HERE FOR YOU anytime you feel like you need a shoulder to lean on, or an ear to listen!!

Take care!!

Jan

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